Now I See Edited by Angela Blakston Created by Carolyn McDiarmid & Angela Blakston
For Gabe and Clem. Our boys, our inspiration.
Design and production: Andrea Dunstan Front and back cover photography: Cathy Satre (Cover subject: Oscar McEwen. Back cover subject: the McEwen family.) Inside photography - pages 9, 10, 32, 52, 72, 92, 112, 132, 152, 174, 196: Justin Ridler at The Artist Group Photograph page 108: Sourced from Down Syndrome Victoria
ISBN: 978-0-646-91505-0 ÂŠ Angela Blakston and Carolyn McDiarmid
Contents Foreword by Jessica Michelle Watt Hine................................................................................5 Introduction by Angela Blakston............................................................................................ 7 1.
Surprise, surprise by Phil Wall............................................................................................. 11
Just like his brothers by Fiona Collis-Nyarko......................................................................15
Pride and joy by Jackie Beard..............................................................................................21
The clattering of pans by Sarah Jane Munn........................................................................25
What’s in a name? by Natalie Lawlor.................................................................................. 29
Lessons from the J-man by Jennifer Hede...........................................................................33
It’s OK to cry by Michael Harrison......................................................................................37
A secret to be grateful for by Sarah Klein...........................................................................41
Taking the plunge by Jan Hine............................................................................................45
My child’s lessons on life by Lyn Legge..............................................................................49
Snow angel by Carolyn Minster...........................................................................................53
A mother’s love, a child’s courage by Lisa Ashford-Potter................................................57
How could this happen to me? by Sarah McEwen............................................................ 61
Why do I feel this way? by Rachelle Jayne Mathews.........................................................65
A change in perspective by Katie Kenny............................................................................69
The most beautiful rose by Judy Ollis................................................................................. 73
Adventures with Charlie by Nadine Grootenboer...............................................................77
Different is just different by Melanie Mora......................................................................... 81
My beautiful Baba-chop by Virginia Lonsdale................................................................... 85
My lighthouse by Casey West............................................................................................... 89
Andy’s down with it by Narelle Bugg..................................................................................93
A birthday to remember by Ari Galper............................................................................... 97
The reality gap by Abigail Elliott....................................................................................... 101
The sky’s the limit by Ingrid Rikkert..................................................................................105
A wedding to remember by Ellie Delafield...................................................................... 109
Chooks, laughter and disability by Craig and Janet Coulson......................................... 113
Inspiring achievements by Jill Harrison...........................................................................117
Our Promise by Emma Dunne............................................................................................ 121
A confronting conversation by Fiona Place.....................................................................125
Musings on luck by Jenni Johnston................................................................................... 129
A mother’s roar by Carolyn McDiarmid............................................................................ 133
Perfect or different? by Karola Franklyn........................................................................... 137
More laughter than tears by Genevieve Hassall...............................................................141
Ngerrk: the white cockatoo with Clare Wright.................................................................145
I have a daughter by Monica Kelly....................................................................................149
No twin-set and pearls for our girl by Libby Mitchell.....................................................153
A love more divine by Angela Farrell...............................................................................159
An unconditional love by Mandy Pearce.......................................................................... 163
Our Lizzy by Adam Hyland................................................................................................167
Living under an Airlie sky by Kristin Mooney..................................................................171
The ambiguity of love by Kathy Evans.............................................................................. 175
One step at a time by Fiona Wales.................................................................................... 181
Being Ben by Nadia David.................................................................................................185
Thank heavens for Daisy by Kate Hewett.........................................................................189
Did God drop a stitch? by Jonene Petty........................................................................... 193
In Sean time by Michelle Somerville.................................................................................. 197
Lily’s story by Tracey Giles................................................................................................. 201
Our angel in disguise by Christine Early..........................................................................205
Life is a highway by Belinda Triptree................................................................................ 209
Coming of age by Judith Kelly...........................................................................................213
About the book’s creators..................................................................................................221
Foreword By Jessica Michelle Watt Hine Hi, my name is Jessica Michelle Watt Hine. I am 26 years old, I live in Queensland, Australia, and I have Down syndrome. Having Down syndrome is good because it’s part of who I am, and I really like being me. When people think I can’t do things because I have Down syndrome, it makes me feel sad. I know I have Down syndrome. But I know I can do anything! I have been blessed. I have always had a loving and caring family and friends, who have helped me to do my best. It’s been great to have supportive parents. My Mum, in particular, is a loving mother, who would do anything for me. Loving yourself is important, and I also like being a good role model for younger children with Down syndrome. For many years when I was younger, I did Speech and Drama. I had to memorise poems and prose and I sat for Trinity College and AMEB (Australian Music Examination Board) exams. With my friends, we represented our school in drama. Also, when I was four years old, I started swimming. I won lots of competitions when I was in primary school, and in (mainstream) high school, I was picked to represent my school at the inter-school swimming championships. A highlight for me as a senior in secondary school was when I won the prestigious Pierre de Coubertin Award from the Australian Olympic Committee and had to go to Parliament House in Brisbane for the ceremony. Today, I still train hard and I have enjoyed representing Australia in the World Down Syndrome Swimming Championships and travelling overseas many times to swim. I have won lots of gold medals overseas and broken some world records too. Another highlight for me was when I won the City of Logan Sportsperson of the Year Award (Logan is where I live). I was really surprised when they called my name to stand up with the other non-disabled nominees. When I won, I felt so pleased and it was nice to have my friends and family, especially those who have encouraged me all along, congratulating me. But don’t think my life is just about winning awards. I have a full life and do regular things too; I really like going to the gym. I have been doing yoga for eight years and I love it because it relaxes me. I like reading and writing and doing arts and crafts. I am also learning sailing. I like to catch the bus and meet my friends for lunch or go to the movies. Sometimes we go shopping. I also work in the volunteer office at the Princess Alexandra Hospital in Brisbane and it makes me feel good about myself to help other people. It has been great to read the stories in Now I See from other families and how they have different thoughts about their children. My Mum has also written our story (Taking the plunge, page 45). I think this book is important; it should help and encourage many families who have children with Down syndrome, particularly those who might be finding life a bit hard. I would tell any new parents, “Don’t be worried about having a baby with Down syndrome. We’re great and we can do anything … just like regular people.”
Introduction “Your child has Down syndrome.” These are words that, as a parent, if you have received them, you will rarely, if ever, forget the first time you heard them. They are words so powerful, so packed with implication for how they will affect the life of your child, born or unborn, your family and your core being, that few parents defy the first typical reactions to hearing such news: shock, denial, fear and grief. These are harrowing and complex emotions, and no one can tell you how deeply, or for how long, they will affect you. For any parent of a child with Down syndrome, the first early years are a huge adjustment, to say the least: not only in dealing with the adjustment that takes place with any new child, but the additional and perhaps greater adjustment to a way of life – and a child – that you hadn’t perceived for yourself or your family. Down syndrome, named after the British doctor, Dr John Langdon Down, who linked its characteristics, or Trisomy 21, the preferred medical name, is a genetic condition in which the individual carries an extra 21st chromosome. This results in a range of physical characteristics, potential health issues and some level of intellectual disability. One of every 700-900 babies born will have Down syndrome. When my husband and I were told that our son had Down syndrome, it was perhaps the most distressing news I had ever received up to that point. I was still in early pregnancy with Gabriel, and from what the doctors could tell from my ultrasounds, our son also had a major heart condition. Why was the news so difficult? Because, for me – and for many parents in this situation – there are myriad emotions and questions to process, all of which are too much for the mind to deal with in one go: How will Down syndrome affect my child? How will it affect me? How will we cope as a family? What will other people or society think of our child and us as a family? Why am I so sad? Will I ever be happy again? These are but a few of the difficult questions that assault you, and can keep recurring to hit you. My husband and I were fortunate. I can generally say that our doctors were respectful of our right to make our own decisions about what was best for our son and our family. For us, the decision to proceed with the pregnancy was not the issue. (And, while that was our “choice”, I fully recognise that it’s not everybody’s.) At the time, though, our proceeding with the pregnancy was made much harder because of all the negative information that we felt we were being inundated with: the cognitive and motor skills delays, the tell-tale physical markers and the long list of other potential health issues, (which, to be fair to our doctors, was their medical and legal duty to divulge). What we found distinctly lacking, though, was any positive information. Something that would give us comfort and hope among the chaos and grief. We did find some of this information, and it did help. But we had to seek much harder, in different places, to find it.
During those seemingly long and difficult months of pregnancy, and indeed after Gabriel was born, I would sometimes ponder the irony of the term “informed choice”, particularly relating to prenatal genetic screening. In our society, informed choice, around the issue of whether to proceed with a pregnancy, is seen as a democratic right. We have genetic screening available to us so we can supposedly know the important facts: whether or not a baby is carrying one of the more common genetic conditions, usually Down syndrome. But I would wonder how many women, and men, have properly realised that a choice is only truly informed when you are being given the full picture, all the information: the negative and the positive. Another irony, one I fully started to realise after Gabriel was born, was that while genetic screening continues apace, the potential and opportunities for children with Down syndrome have never been greater. Early intervention, access to medical procedures and medication, integration into mainstream schooling and living in a (hopefully loving) family environment rather than being institutionalised, are providing huge and so far unquantified leaps in the quality of life for people with Down syndrome and their families. Again, my husband and I were fortunate. Six months prior to Gabriel being born, very good friends of ours, Carolyn and Gordon McDiarmid, had given birth to a son with Down syndrome, Clement. When I had days that were difficult during the pregnancy (and they were many), I at least knew that we were not alone. And, after meeting Clem, holding him in my arms, (while my baby rested inside me), and seeing how beautiful and how much like any other baby he was, I knew that we would be OK. (Another set of very good friends, Sarah and Josh McEwen, gave birth to a gorgeous boy, Oscar, six months after Gabriel was born. And it was a humbling and enriching experience for my husband and me to be able to offer similar support through our son.) It is perhaps rare to have close friends, in the same situation, who can immediately sympathise with the complexities of the issues involved. What Carolyn and I were discovering very quickly though, was that yes, there were challenges involved with caring for and loving our sons. But there was also something amazing happening too: the joy of discovering just how lovely our sons are; how seemingly normal life with a child with Down syndrome is; the humbling and comforting goodness, support and love of an abundance of people around us; and how liberating it was to have worked through and thrown off some of our own ignorant and misguided perceptions about Down syndrome – and ourselves. Yes, life may still be hard at times, but it was also becoming richer, more meaningful and more amazing than we could ever have imagined before our sons were born. (Another irony: I was often distressed by all the negative information that could be told from my ultrasounds and other medical data predicting my son’s future. But no amount of medical technology could have predicted, once I met my son and started to get to know him, to so easily bond with him, just how absolutely and overwhelmingly I would love him.) And it was about this time, early in our boys’ lives, that Carolyn and I decided to start working as a team to reach out to other parents. We had shared and read a couple of books, printed in the US, about parents’ experiences of their lives with their children with Down syndrome, and these were a huge source of comfort at the time. (One book, in particular, Gifts, edited by Kathryn Lynard Soper, was particularly inspiring; and Kathryn was very helpful in the early stages of our book.) But there was no book currently available about the experience of parents living in Australia and New Zealand. Combining our skills, our newfound passion for our sons, and for the cause of Down syndrome, we decided to compile our own book. Our aim was to produce a book that we would have liked to read when we were first told about our sons’ condition, about the first-hand experiences of parents of children with Down syndrome. One that, while not shying away from the challenges of coping with this situation, also told of the rich and precious lessons and rewards our children have brought to our lives – the strength, 8 |
courage, delight, perspective, respect and love, for instance. Our aim was not to counter the negative information given by medical professionals, but to complement that information. Nor was it to dictate to or to tell people what they should or shouldn’t do when faced with a diagnosis of Down syndrome. We hoped, ultimately, in some small way, that this book would offer support and insight for new parents, and perhaps better educate society as a whole. Our aim also is to direct any profits from the book towards the distribution of free copies to new parents and health professionals. For Carolyn and I, the process of producing this book has involved more than three years of our lives, crammed into short intervals, away from caring for our young families. At every step, though, our efforts have been supported: by the Down syndrome associations, the parents who have contributed their stories, and our families and friends. In so many ways, the 50 stories in this book speak clearly and richly about the human condition and our ability to not only cope, but to thrive in the face of what is perceived, particularly initially, as a hardship. They also speak of the inherent beauty and individuality of our children, and the precious, yet so often underrated, contribution our children make to the progress of humanity – the ways in which we become more resilient and more compassionate human beings. In this way, too, Carolyn and I thought it appropriate to call the book Now I See. No matter what your beliefs, few would deny the beauty and power of the old hymn, Amazing Grace. The lyric, “Was blind but now I see,” amplifies the ways that all these parents, including myself, feel about how their children have enriched their lives – in ways that are more freeing and liberating, enabling them to live every day with greater insight and joy. If you are reading this then, and haven’t quite arrived there yet, again it is our humble hope that you might find the right encouragement in this book to help you journey there, if not quicker, then with more grace and peace as you go. Angela Blakston Editor
Joel, Gabriel and Angela
Surprise, surprise By Phil Wall
Do you like surprises? From my experience, surprises come in many disguises and sometimes, when you need them most. On a day in mid-December, in one of those rare moments that changes lives and in an instant presses the delete button on every superficial priority you’ve ever had, my wife and I were told our new, firstborn girl wasn’t the baby we had been expecting for Christmas. On that awful morning after Kimba’s birth, at 9.25 the night before, the doctor spoke to us for a while, but I have no recollection of what he was saying after hearing the words: “Your daughter has Down syndrome.” Such a simple sentence with such devastating impact. That was a surprise that, at the time, we thought we could well go through life without. The fear of the unknown is terrifying by its nature, and that was the position my wife and I found ourselves in that morning. Within half an hour of the news, our parents arrived to be first in line for cuddles with their latest grandchild. The nursing staff explained the situation to them and without a second’s hesitation the message from our parents was loud and clear: “So what? She is our granddaughter and we love her; we love you and that’s all that matters.” The next few days became a blur of flowers, and visitors who didn’t really know what to say; congratulations or sorry. Then, the next surprise arrived: Kimba had problems with her heart. I will always remember asking, “Is it fixable?” The answer was, “Yes.” That was all we needed to know. It was sorted; she would have the operation and all would be right. Time for another surprise. At three months old, Kimba went into the Royal Children’s Hospital in Melbourne for open-heart surgery to have two holes in her heart fixed. The morning after surgery, Kimba was in Intensive Care recovering when alarms started sounding and my wife, Maryann, and I were rushed out of the ward. Some 20 minutes later, we were taken back in to discover that for some unknown reason her blood pressure had dropped to zero and we had lost her for a few seconds. The surprise for us was that we had wondered in her first three months how we were going to get through life with her, and now, faced with this, we were wondering just how we would survive without her. Thank God she made it. A week later, she was back home and that’s when the big surprises started to roll in. In the Mother’s Group that Maryann was a part of, Kimba was one of the first to roll over. (Pretty cool!) One of the mothers heard about a bouncing-baby contest and all agreed to enter for a laugh. Kimba came away winning the lot: best dressed, most beautiful and the major winner of the Princess of the Day. (Now that was really cool.) A little later, she was one of the first to sit up. (Not too shabby, hey.)
A few years later, one of the mothers had registered her son with a modelling agency and when she told Maryann, she jokingly asked if they were looking for any gorgeous children with Down syndrome. Unknown to us, the friend went back to the agency and showed them a picture of Kimba. Surprise, surprise; the next thing Kimba was featured in a catalogue advert for Target. Over the next couple of years, Kimba modelled for quite a few catalogues and was featured on a number of TV news programs. One reporter, in an interview on television, asked her about the operation she had when she was little and she explained that she had had a broken heart. It was also quite surprising to see this male reporter shed a tear at her answer. During this time we had so many letters and cards from all over Australia, from new parents to schoolkids, who had been inspired by Kimba. One lady called to say that she had a new baby with Down syndrome, and the visitors who would normally bring flowers or chocolates, were all arriving with the latest Target catalogue featuring our daughter. Another caller told us about a woman whose husband had never accepted their eight-year-old son with Down syndrome, but had arrived home in tears with the Target catalogue and now things were much better. Kimba had no idea just how many people she had touched, but by now, to us anyway, it was no surprise at all.
We had wondered in Kimba’s first three months how we were going to get through life with her, and now, faced with this, we were wondering just how we would survive without her. The ability to be surprised is only matched by the ability to surprise. We believe that we continue to have these wonderful experiences because Kimba constantly soars above the normal and everyday. She simply won’t allow herself to go quietly; nobody will ever be able to tell her that it can’t be done. This year Kimba will turn 21 and she has given us all so many special gifts, but there are a couple that we will always thank her for. The gift of love goes without saying; she seems to have so much love to give that I don’t think she will ever run out. I thank her for the trust I see in her eyes when I tell her that everything will be OK, because then I know it will be. I thank her for the gift she gave me to understand that sometimes different is a very wonderful thing. I thank her for her innocence, her true love of life and her absolute determination to be the best Kimba it is possible to be. Now, as she grows into a beautiful young lady, her life is changing. Life will have its new challenges, but I know she will give us the gift of pride as she meets these challenges head on and beats each one. To look back over 21 years and attempt to understand how being blessed with a child with Down syndrome has changed our lives, is almost impossible. What if she hadn’t had Down syndrome? Simple, then she wouldn’t be Kimba. As surely as the colour of her eyes and hair, her personality, smile, temperament and demeanour are just some of the parts that go to create the whole. Down syndrome is simply another facet, another part that goes to make our beautiful, thoughtful, 12 |
talented and surprising daughter what she is today. We would never want to change a single thing. No matter what we as parents have given to Kimba, we have been rewarded 10,000 times over. They say that life is there for the taking if you are prepared to grab it with both hands. Well, Kimba has it by the tail, and from what I can see she doesnâ€™t plan on letting it go anytime soon. Now thatâ€™s not a surprise.
Phil and Maryann Wall live in the bayside suburb of Chelsea, Victoria. Kimba has one younger brother, Dave, and they have two cats, which together rule the roost. The family runs a small business, called Flashy Bits, which Kimba enjoys helping with, especially when working with tribute shows like BABBA and The Eagles. Phil has been a volunteer with the State Emergency Service for nine years and this volunteering trend has rubbed off on Kimba, who also volunteers at a couple of op shops in their local area.
I thank Kimba for the gift she gave me to understand that sometimes different is a very wonderful thing.
Okoe 14 |
Just like his brothers By Fiona Collis-Nyarko
Each of my boys is special. Jeffery Owusu, my eldest, is athletic and handsome. Nudging six foot two, his 16-year-old frame is built for sprinting and shooting hoops. However, his most valued talent is for pulling things apart and putting things together, and he is highly sought after by friends and family on camping trips and in the aftermath of an Ikea shopping bender. Douglas Asiedu is my middle son. At six years old, he sports a mop of golden brown ringlets and eyelashes that have the power to turn supermodels green with envy. I’m told that in Ghana, West Africa, his name implies an inborn gift for public speaking. True to his name, he started talking well before baby boys are really meant to talk, and has barely stopped since. Okoe Leonard is my third born. His African name, oh so creatively, means “firstborn twin”. If I’d known then about the medical profession’s obsession with labelling twins according to their birth order, I might have put my foot down and insisted on calling him something different; something that better reflected his good nature, generous spirit and wild sense of humour. But Okoe it was and Okoe it still is, and I have to admit that its strength and lack of pretension suit him well. Okoe was welcomed into the world by an eager audience of anaesthetists, obstetricians, paediatricians, midwives, researchers and medical students, all craning their necks to get a good look at a “natural” twin delivery. That this “natural” birth took place in an operating theatre (“just in case”), and was assisted by enough sedatives to keep a dealer in business, didn’t seem to dampen their enthusiasm. I don’t remember being allowed to hold Okoe while we were still in theatre, but I do remember squealing with pleasure when I saw him in person for the first time. Okoe was the plumpest, prettiest newborn I had ever laid eyes on. Weighing in at almost four kilograms, he was a hearty size for any baby, let alone a twin. He had a creamy complexion, dimpled cheeks and exquisitely shaped eyes that implied that he was from Asian rather than African descent. I was so captivated by his loveliness that at first I didn’t notice the concerned looks on the faces of the hospital staff as they fussed and hovered. The only thing able to break my infatuated gaze was the announcement that Asanti William, my fourth son, was finally on the scene. Asanti was small and fragile compared to his twin brother. It was as though he wasn’t quite ready to come yet, but didn’t have a choice – after all, it is the firstborn twin that sets the pace. He reminded me of a little baby bird that had fallen from its nest – lost, frightened and vulnerable. As I looked from one baby to the other, it hit me that life had changed forever. Not only was I now responsible for two more little lives (a responsibility I wasn’t sure I was ready for), it occurred to me that my plump, pretty Okoe had Down syndrome. Bliss turned to panic in an instant, but I told no one. Perhaps I thought if I didn’t say anything out loud, the doctors wouldn’t notice and Okoe and I could quietly go about our lives as we had planned.
A short while later, while I was alone in recovery, the medical onslaught began. My husband, Yaw, and beloved friend, Beth, accompanied the babies up to our room, while I waited for feeling to return to the lower half of my body. The paediatricians who had been there at Okoe and Asanti’s birth drew up alongside my trolley. “Congratulations, Fiona, your boys are lovely,” they said. “I know,” I smiled, wishing they’d just go away. “We don’t want to worry you, but we have to tell you that when we were examining Twin One we noticed he had a few characteristics that are often seen in babies with Down syndrome. It might not be anything to worry about, but we were wondering whether there was any prenatal indication that suggested a risk of Down syndrome?” “No, I don’t think so,” I lied, wishing they would lower their voices. The truth was that 23 weeks into my pregnancy, a routine ultrasound picked up that Twin Number One (my Okoe) had hydronephrosis, a blockage in his ureter that caused his left kidney to swell. No one was overly worried about the condition. What it meant was that Okoe would need a series of tests fairly shortly after he was born. If the blockage was still apparent, he would probably need a stent or at worst, surgery to repair it. A bother, for obvious reasons, but not lifethreatening, especially since he had another perfectly good kidney. However, it was also pointed out to me, rather brutally, that hydronephrosis is also a marker for Down syndrome. The senior sonographer, who made it quite clear that she thought I was naive and irresponsible for not succumbing to screening tests early in my pregnancy, then insisted that I would now be made to have an amniocentesis and proceeded to give unwanted and unsolicited advice about the pros and cons (medically speaking) of having a “foetal reduction” in advanced twin pregnancy. Horrified, I left the hospital vowing that I wouldn’t tell anyone about her suspicions. To my relief, none of the specialists who provided follow-up care ever mentioned a risk of Down syndrome or the need for further testing. Silence was proving to be an effective strategy.
I was so captivated by Okoe’s loveliness that at first I didn’t notice the concerned looks on the faces of the hospital staff as they fussed and hovered. For the next few days after the babies were born, we endured twice-daily visits from the senior paediatric consultant and her entourage of registrars and student doctors, efficiently pointing out the various physical features of Down syndrome – the low muscle tone, the placement of his ears, the crease across his palms, and so on. Her greatest concern, she announced to all and sundry, was for his heart. “One in two babies with Trisomy 21 has a heart defect,” she would say, before placing the stethoscope to his chest and holding her palm out to indicate that everyone should be quiet. Each time I would hold my breath, waiting for her verdict. Each time, she would pause a few moments before clicking her tongue and saying, “I can’t hear any murmur.” She seemed almost disappointed. The nursing staff were no more helpful. They tippy-toed around us, providing inconsistent advice on breastfeeding and general baby care, but barely acknowledging that Okoe was a little different to regular babies. It was as if they, too, felt it was easier and less painful if no one talked about it. The problem was, not one of the many health care professionals who dealt with us during that week took responsibility for explaining what it meant, in anything other than frightening medical terms, to 16 |
have a child with Down syndrome. We were given compassionate looks and the occasional elbow squeeze, but no information to speak of and certainly no reassurance that everything would be fine. Throughout this time, my greatest source of comfort was Okoe himself. Even as a newborn baby, he had an incredible gift for lifting my spirits and letting me know that life is perfect, just the way it is. His plump, warm, pliable body melted into my chest as I held him, and he gazed at me with loving, smiling eyes. My husband was perplexed and, of course, extremely worried. English is not his first language, but he could nevertheless read the mood. Finally, I broke my silence and tried to explain to him their suspicions. There was a long pause, before he asked in a devastating whisper: “Are they going to take Okoe away?” At that point, another change swept over me, but this time it brought peace. Now I knew with my entire being what it meant to have a child with Down syndrome. Having Okoe was no different from having any other child. We would love him with all our hearts, just as we love his brothers. We would advocate for him, just like we stick up for his brothers. Just like his brothers, he would grow and develop at his own pace. Just like his brothers, he would excel at some things and need help with others. Just like his brothers, there would be times when he delighted us, and times when he infuriated us. Just like his brothers he would live, laugh, love and, most definitely, be loved.
There was nothing about this beautiful baby boy that warranted pity or sadness. Okoe is 13 months old now. He is not quite crawling, but he can work a room by pivoting across the polished floorboards in ever expanding circles. He is a picture of good health and a genuine people person – greeting everyone he meets with a wide, gummy smile, frantic waving and delighted squeals. He loves to do many things; chatter to the birds in our garden, turn the pages of his favourite books, splash and squirm in a warm bath, and indulge in lazy Sunday morning snuggles. His latest obsession involves making a racket with anything he can get his hands on. I wonder if he’ll play percussion like his dad, be good with his hands like Owusu or have the gift of the gab like Asiedu. I never used to look forward to Mondays. Now, every Monday, a sweet and thoughtful carer comes to our house to make a fuss over Asanti, while I sneak a few precious hours alone with my Okoe. Sometimes, we go to see his physiotherapist for a workout that typically involves more laughter and celebration than hard work. Sometimes we stroll down to our local café and share a muffin while the hip young staff jostle for his attention. Now, Mondays are easily my favourite day of the week. I’m back at work, and with four children, I don’t have the opportunity to get out as much as I used to. However, I have been lucky enough to meet some other parents of children with Down syndrome through our local Down syndrome association and I look forward to catching up with them whenever I do get the chance. Just like us, they seem to lead normal lives with their normal families. However, these parents have provided the best source of information, support and encouragement by far. I wish I’d had a chance to meet a parent of a child with Down syndrome during those first few tumultuous days in hospital.
A straight-shooting friend of mine once admitted that when she first heard the news that Okoe had Down syndrome, her first inclination was to offer us condolence. Then, when she got to meet him and hold him, she realised there was nothing about this beautiful baby boy that warranted pity or sadness, and retracted her offer immediately. While parenting Okoe has most definitely been a joy, I still struggle with some issues. I struggle with being referred to as Okoe’s “carer”; I don’t feel like a carer, I just feel like a mum. Although some might say I was in denial, I especially resented my newborn being categorised as “disabled”. He was just a baby who cried, pooped and gurgled like any other baby. Why focus so early in life on what he may or may not be able to do when he grows up? All I see, when I look at my Okoe, is ability and potential. Just like I see in his brothers.
Fiona Collis-Nyarko and her husband, Yaw, live in Melbourne, Victoria, and are the proud but exhausted parents of four handsome African-Australian boys, Owusu, Asiedu, Okoe and Asanti. In her time off from parenting, Fiona works as a research psychologist and, for the past 10 years, has had a particular interest in researching and documenting the experiences and support needs of young people who live with chronic illness or disability. Yaw builds caravans by day and performs with Asanti Dance Theatre by night.
I would not choose to have a different journey now. We have grown as a family and I have certainly grown as a person because of Cateâ€™s diagnosis. She has called me to honesty, to kindness, to a great tolerance and love. Jo Smith | Coogee, New South Wales
I would never focus on the negatives, I would never concentrate on what Hannah couldnâ€™t do, I would never underestimate her.
Hannah 20 |
Pride and joy By Jackie Beard
As my then seven-year-old daughter twirled and danced her way out of her Club Slick rock ’n’ roll dance session, one of the volunteers turned to me and said, “She loves it, doesn’t she? One day she’ll dance for Australia.” I puffed up with pride. “Thank you,” I said. Thank you for seeing my daughter as I see her: capable, able, full of opportunity and possibilities, joy and beauty. Thank you for seeing Hannah, our pride and joy. It wasn’t always so. When Hannah was born, the paediatrician sat down with my husband, Craig, and me to explain why he suspected she had Down syndrome. He pointed out her small ears, her eyes, her floppy neck and the shape of her big toe; each a bigger imperfection than the last. I had to stop looking at her. Somehow my baby had been taken away and replaced by a medical condition. I wanted to make him stop talking and saying the horrible things he was saying about our baby. I wanted him to be talking about someone else’s child. It was the saddest day of my life. I just bowed my head and the tears dropped onto the hospital bed covers. I couldn’t even look at Craig. The midwife handed me a tissue but I didn’t use it. I needed the tears to come out as I thought they might wash away how I felt. I remember being so completely disappointed and I hated that feeling. What was supposed to be the most joyous moment in our lives had turned to one of sadness, confusion and grief and yet, there was our beautiful daughter lying there. I couldn’t believe I could have feelings of shame and disappointment about such a tiny, vulnerable human being and I felt so guilty about it. After all, it wasn’t Hannah’s fault. I blamed myself. I felt I had let everyone down. I cried for Craig because all I had wanted to give him was a beautiful baby and instead I felt I had made him sad. Craig said he felt so helpless and all he wanted to do was to make things better. Neither of us could believe it had happened to us. It just seemed so unfair. We had done everything right, everything possible for our little baby. We were responsible parents and yet we had been punished. Not that we wished it on anyone else; we just wished it hadn’t happened to us. Craig kept saying over and over that we had each other and we had to stick together. That afternoon alone in the hospital, I did a terrible thing. I basically wrote off Hannah’s life. I assumed that she wouldn’t be able to live a life the way I had lived mine. I decided she wouldn’t know the joys of travel, wouldn’t go to university, wouldn’t have friends and be invited to parties, wouldn’t be able to participate and excel at sport, wouldn’t get married or feel love. I believed she wouldn’t be beautiful or talented. I found myself in a deep black hole from which I could see no future. I couldn’t even say the words Down syndrome out loud, let alone see any positives. I didn’t want to see anyone or talk to anyone. The celebration of her birth had been cancelled – by me.
Craig and I didn’t have much time to talk because Hannah’s temperature was dropping and she had to be taken to the Special Care Baby Unit. We wheeled her down and handed her over to the midwife. The staff kept referring to her as “she” and I suddenly said, “Her name is Hannah.” Immediately, the darkness started to lift. Once again I was able to see our baby, our daughter who needed to be loved, cherished and cared for. She was beautiful, peaceful and alive and I felt a stab of pride. I literally kicked myself. How dare I write off someone else’s life. How dare I sit there dictating all the things she couldn’t do. She was our firstborn, our beautiful daughter and if we didn’t believe in her, then how could we expect anyone else to? I made a promise to myself and to Hannah there and then that I would never make that mistake again. I would never focus on the negatives, I would never concentrate on what she couldn’t do, I would never underestimate her. Nine years later and we still live by that mantra: Hannah can do it. So she was breastfed for the first 12 months of her life. The experts warned that she may not be able to but she showed us she could. At six months, we started swimming lessons; she loved the water. At eight months, she sat up and started rolling around and at age one, she went to childcare. We learned sign language and she told us when she was hungry and when she was thirsty or tired. She had speech therapy, occupational therapy and physiotherapy. She smiled at everyone and people would stop me in the street and say what a beautiful baby she was. I was proud of her and wanted to show her off, so I joined the Mums and Bubs group, Kindergym and Kindermusik. She got up and walked and ran and bounced on the trampoline. She loved the Wiggles and went to Wiggles concerts and fairy birthday parties. She loved playgroup and fairy dancing and nobody said she couldn’t go. She went to kinder and was one of the best performers in the Christmas concert. When she put on her uniform and went off to her first day at (mainstream) school, I wanted to yell it from the rooftops. I was so proud of her it hurt. Now she tells me what she wants for lunch at school. She even told the principal she wanted him to be her next Show and Tell. She became big sister to our two other children. She corrects her brother when he gets the story wrong and she loves blowing raspberries and giggling with her baby sister. People often say that we are blessed to have Hannah or that we are special parents because we have been chosen to have a child with special needs. That we must be strong, capable and have extra powers that other parents don’t have. I don’t see it that way. I see it as a matter of biology. Hannah has an extra chromosome and it makes her unique. Just like any other child is unique. Hannah will be Hannah: a beautiful girl with a wonderful smile, a wicked sense of humour, who loves to dress up and put on performances, whose life is full of music and dance, with a family who loves her completely and unconditionally. And I am Hannah’s mother. That’s it, nothing more and nothing less. I don’t have special powers, I haven’t received special training, and I don’t bear special knowledge. I do the best I can and some days that’s good and other days it is not. Sometimes I lose my temper and sometimes I have the patience of a saint. Sometimes Hannah is affectionate and kind, sometimes she is not. Sometimes she is happy and content, sometimes she is not. Just like any other child. The only difference is that with Hannah we have to fight the system, we have to fight for Hannah’s rights and face a society quick to judge on misconceptions. I have made lots of new friends. I also hope to make a difference by sitting on the boards of the local Down syndrome society, of Hannah’s school, and the Ministerial Disability Advisory Council. But I know that in the end Hannah will show everyone who she is and what she can do and, hopefully, she will be judged on that and nothing else. 22 |
I am not proud of the thoughts I had when Hannah was born. It has not always been easy and occasionally I revisit that black hole. But now, people tell me I glow with love and pride when I talk about Hannah or when Iâ€™m watching her achieve something. It is true; I feel it myself. I am also proud of my husband for never flinching or looking away. I am proud of our family and friends for always being there and supporting us no matter what. I am proud of the kindness of strangers and those who always have Hannahâ€™s best interests at heart. So while Hannahâ€™s birth may not have been the celebration she deserved, thankfully she has taught us, among many other things, that her life is a celebration. Whether she dances for Australia or not, I hope Hannah will always dance for herself and show us, and others, that our children will always be our pride and joy.
Jackie Beard lives in Adelaide, South Australia, with her husband, Craig, and their three children, Hannah, Matthew and Charlotte. She works for the Australian Red Cross as a team leader for the Migration Support Programs and is on the board of Down Syndrome South Australia. She enjoys reading with her book club friends, playing squash and watching all forms of sport, especially cricket.
In the end Hannah will show everyone who she is and what she can do and hopefully she will be judged on that and nothing else.
We did grieve for the child we had imagined I was carrying and we let go of his future in order to make room for a much more interesting journey.
Isaac 24 |
The clattering of pans By Sarah Jane Munn
I hadn’t met my son 19 months ago, and I didn’t know I was about to win the lotto. I had no idea about the profound adoration that would fill my world and turn my life from something fairly normal into something extraordinary. I never knew my heart could grow so much. It just seems like yesterday that I was sweating in a hot office at the local hospital, with swollen feet, aching hands and a feeling of excitement wriggling in my belly. I was all baby. “He, or she, is going to be big,” everyone would say. The other occupational therapists would come into my office to say, “Hi” or “Bye,” and kill some Friday afternoon time, on my last day of work, before I went on maternity leave. Six weeks to go. Six weeks with nothing to do but read magazines, lying in the hammock. It was my first child, my first pregnancy. There would be no hammock time. Two days later, on the Sunday, I would be in hospital and by Wednesday, I would have a perfect little boy called Isaac, or Ike. By the next Sunday, he would be diagnosed with Down syndrome. He spent six weeks in hospital while he tried to feed and eventually came home with a feeding tube down his nose. I am glad my husband, who is 12 years younger than me, cried with me. I am glad we held each other tight and felt the fear, but I am also immensely grateful that neither of us did it for very long. There was no blame, but we did grieve for the child we had imagined I was carrying and we let go of his future in order to make room for a much more interesting journey. The feeling of acceptance can be so relieving and beautiful. Now it’s in my heart, I feel like it will never leave. A friend of a friend, who has a four-year-old boy with Down syndrome, rang us the day after Ike’s diagnosis. “I hear you’ve won the lotto,” he said. We stared at the phone, on loudspeaker. We were silent. “You’ve won the lotto, mate. They’re the best kids.” He went on to talk about his child, his family and how his son was just like every other kid, needing to be dragged off the sofa to go and get ready for bed. I remember listening, not just to the words he was saying, but also to the clattering of pans in the background. I could hear the family talking and it was reassuring to listen to normal family life, while we had a sick baby in the hospital’s Special Care Unit. We sat in our living room next to the empty bedroom we had prepared, with Ike’s cot neatly made up and scattered with little teddies. Our house was empty, silent and afraid, and yet this family on the phone was the noisy sound of hope. We had dropped into their normal life for 20 minutes out of our quiet and still night at home, and we hoped that we would be OK too. Before Ike was born, I had no idea how my being an occupational therapist would come to test me. I had worked with people with learning disabilities and children with special needs for 20
years. I had been the senior occupational therapist at Great Ormond Street Hospital for Children in London, working in neurology and neurosurgery. I understood the medical lingo when the doctors spoke to me about all Ike’s potential problems. Despite this, I felt an incredible desire to love and be loved by this child. With all the luck of being in the game, I found my roles – as therapist and parent – initially brought confusion for me. I struggled to fit in around other therapists, as just another mum, and struggled to chat casually about my line of work with other parents in desperate need of more therapy. They would say, “Oh, you’re all right then.” Or, “We need help from you.” Medical professionals would talk to me as though I understood everything and yet the funny thing was, I had forgotten everything. Nothing I knew seemed to apply any more. Entering the world of disability on the other side was challenging enough, but this perception that it was somehow easier for me felt isolating. As a therapist, I knew little of motherhood or parenting, and when Ike was five months old, I was 41 and pregnant again. Tiredness and then another boy, Angus, or Gus, would mean I had little time for assessing Ike or compiling therapy programs. And honestly, why would I? Why would I? The answer to that was because, in the area where we lived, services were thin on the ground. Early intervention is thought to be key, and yet our experience has been that there hasn’t been much of anything available. We slipped through the net, despite having friends on the team at the Special Care Unit. I chased up the early intervention referral myself when Ike was three months old, only to be told there had been no referral made. Nineteen months ago, I didn’t know I would case-manage my own child and chiefly provide his early intervention, although now I know that most parents of children with special needs do this, not just occupational therapists or other therapists. I also now understand, and can fully appreciate, how families have little time to follow the home programs I had once so diligently provided. It was me, the therapist, who called the Aids and Equipment Program and argued the need for a high chair for children with low muscle tone. It was me, the clinician, who looked up normal developmental stages and clinical issues in my university textbooks. It was also me, the therapist, who had to exercise restraint to stop Ike’s care overtaking the rest of my life and relationships. Nobody wants to be married to a know-it-all or feel under pressure to perform as a “therapy dad”. My family would not react well to seeing Ike as my next work project. I also needed to communicate with my husband about what we should be doing. Thankfully, my professional knowledge did help us in this regard. Trying to sound laid-back rather than give a lecture – after all, my husband wasn’t one of my students – I would introduce new concepts at times when he was chilled out and could take on a new idea. “He needs to practice his saving reactions or he’ll keep falling over and banging his head. Let’s try some games before bed,” I would suggest. We would play games with gusto, both of us singing and dancing in our lounge room or kitchen, the children completely unaware this was “therapy”. I love that phrase therapists use, “It ain’t what you play, it’s the way that you play it.” And if play is the child’s work then Ike was being very productive. Usually, it was me, the mum, who played games like Round and Round the Garden, just like any parent playing with their child. I had no thoughts of neural networks, anticipatory play or providing proprioceptive input and stimulating tummy muscles. All this may have been happening but I was just being a mum. I was living a dream I had dreamt for so long, of being an English 26 |
girl in Australia and playing with my child. I had wanted to raise kids on the beach for many years before I met my Aussie husband three years earlier. And we were having our days at the beach, just like other families. I would sit with Ike between my legs in the shallows of the ocean. Each wave that lapped upon us brought tranquillity and positive energy. As a mother, I was complete. Ike first went to the beach when Luke and I got married. He was 10 weeks old and had been home for only four weeks. My parents had come from overseas and Luke and I exchanged rings on the beach down the road from our house. It was a wedding at which everyone cried and love held in the air like a pink mist over the sand and sea as we walked together, smiling and crying down the aisle of loved ones. Ike, still so tiny, lay tucked in his dad’s proud arms, head falling limply to one side as he slept. We were so happy and soon after, Gus would begin in my belly, and then our family would be complete. These days, at 19 months old, Ike is walking using a K-walker or pushing his trolley and crashing into the walls, making me think about redecorating. He uses his words, saying, “Up Dada,” and banging his fist into his hand for a biscuit and smiling, expecting the usual answer: “No. No more biscuits, it’s nearly tea time.” Today, I am thankful to say that my different roles have merged into a happy fusion of textbook brain, intuitive therapist and the mummy heart. I feel like any other parent, giving their child with special needs the opportunities to reach their goals and full potential; looking things up, figuring things out, applying for funding, using services and yet mostly playing. I am cooking and Luke is home from work in time for tea with the boys. Gus is a telly addict already and is watching TV, sitting in Ike’s old Bumbo seat. Ike is in the kitchen with us, chattering away. He pushes his car around the legs of our dining table like any little boy. And, as I try to have an adult conversation with Luke about his day, intermingled with singing Hello Mr Whiskers, I notice that I, too, am clattering pans.
Sarah Jane Munn lives with her family on the Mornington Peninsula, Victoria. She first started working with adults and children with learning disabilities in 1989 and qualified as an occupational therapist in 1996, specialising in paediatrics. She moved to Australia in 2004 and met Luke, a carpenter, two years later. She now runs her own occupational therapy practice in Rye, Mornington Peninsula.
Sophie 28 |
What’s in a name? By Natalie Lawlor On finding out I was pregnant, like many couples, we started the name game. What if it’s a boy? What if it’s a girl? What would we name “it”? We couldn’t seem to find a name that we both liked. As fate would have it, our daughter, and the path that she would steer us on to, would influence her naming and the significance that it held. The name Sophie means “wisdom” and upon finding out we were having a girl, not just any ordinary girl, but a special one who would require our wisdom, good judgment, understanding and insight to ensure that she entered the world, the name just seemed right. Like many parents, when I went off for my ultrasound at 13 weeks into the pregnancy, I was excited about seeing my baby for the first time and not focused on the reason the ultrasound was being conducted; that is, to detect for any abnormalities such as Down syndrome. My obstetrician had provided me with information to read that included information on Down syndrome, but I read it without thinking I would need to know any of it. My partner, Tim, has a son from a previous relationship and was quite blasé about the ultrasound also, advising me, “You go with your mum; I’ll come to the next one with you.” Fortunately, I did have my mum with me as the sonographer who undertook the ultrasound had the unfortunate task of telling me that I had a 1 in 2 chance of having a baby with Down syndrome, based on the width of the nuchal fold shown from the ultrasound. The doctor was fantastic and suggested she chase up the results of the blood tests that were undertaken in conjunction with the ultrasound, as the results of the blood tests might reduce the “risk”. I was in shock and incapable of making any decisions. I’m so glad my mum was there to support me. Together, we waited for the results. The risk remained unchanged, and Tim and I were faced with the probability that our baby had Down syndrome. We chose to have an amniocentesis, which was not an easy decision due to the risk of miscarriage, but we felt we had to know. I was terrified having the amnio and waiting for the results felt like an eternity. I had this feeling that our baby would have Down syndrome and we both felt that it would be a girl. The results confirmed my feelings on both counts. I felt my world crashing around me and it was all-consuming; it was all I could think about and I spent days, weeks, months trawling the Internet for information. In the weeks that followed it seemed that everywhere we went there was a person with Down syndrome. Tim likened it to buying a new car; you never notice that model until you own one like it. You realise that those models exist but they belong to other people so you don’t give them much thought. Many ultrasounds later, for a variety of reasons, it was detected that Sophie (who by now had been named) had two holes in her heart and that it would require surgery to fix them. Life just became a
whole lot more interesting and terrifying. While the issue of Down syndrome was there in the back of our minds, the heart issue was a bigger beast to contend with. I had images of our baby being rushed off for surgery the minute she was born and found myself annoyed at pregnant couples who were debating what sex they were hoping to have. At this, I kept thinking, “You should be just hoping for a healthy baby and not worrying about such trivial things.” However, had we not been faced with Sophie’s heart condition and Down syndrome, who knows, we probably would have been joking over the same things. When Sophie was born, I was so glad that we knew she had Down syndrome and that we had told our family and friends and didn’t have negative or pitiful looks to deal with or questions like, “Down syndrome?” People knew that she had Down syndrome and that she needed heart surgery, and it seemed to make her that much more special to everyone. To us, we had come to believe that she was just our beautiful girl and that we could enjoy our baby the same way every parent can. I was a little hesitant about joining a Mother’s Group, as I didn’t think I would be able to relate to other mothers of “normal” babies. I have been so lucky to meet some amazing women who have made me realise that motherhood is a challenge for anyone and that every child has challenges. Sophie struggled to feed and put on weight, while other babies weren’t good sleepers and left their mothers tired and emotional. Some of those mums I met in the early days are now good friends and they have shared in the excitement of Sophie reaching each milestone; sitting, crawling and finally walking. When I became frustrated with Sophie’s behaviour, they reminded me that all two-and-ahalf year olds throw tantrums and are fighting for their independence.
Sophie will often surprise a stranger with an impromptu ‘hello’ when we are out and about. We have also been fortunate to meet other families of children with Down syndrome and other developmental delays. I prefer the terms “developmental delays” and “special needs”; they sound less harsh and less discriminatory than “disabled”. Through these parents and their children we have learnt how lucky we are to have such a gorgeous little girl. Yes, she is Little Miss Independent and gets frustrated with our limited communication. We often don’t know what she wants and she often ignores our requests, but she is a bubbly little girl and it’s not uncommon to hear her exclaim, “Wow!” taking delight in some of the simplest things in life. She is also yet to realise that not everyone is our friend and will often surprise a stranger with an impromptu “hello” when we are out and about. I grew up with a cousin, Susan, who has Down syndrome. She is about 10 years older than me and we often played together at family functions. Susan and her family were my barometer on Down syndrome. While we didn’t see each other often, the times we did have stuck in my memory and I saw the love that she and her siblings had for each other, and the love that existed between mother and daughter. I didn’t have a second thought about raising a child with Down syndrome and this is because I had grown up with Susan in my life. I may have been naive about what challenges that would bring, but until you have a child I don’t think you can really understand how much they change your lives and how much love you are capable of. My aunt, Susan’s mum, died last year, and it was hard for me when I saw how devastated Susan was at the funeral. I worry for Sophie, especially when we have gone and worry about who will 30 |
look after her should something unfortunate happen to Tim and me. Both our families are fantastic though, so I know she would be in good hands. My nephews and nieces have taught me about acceptance above anyone else. Adults will tell you how hard it will be and all the issues you might face with a child perceived as different from the norm. But children have this innocence and an unconditional acceptance that adults often don’t have. My sister’s boys were funny when my sister explained to them that Sophie has Down syndrome and what it meant. When the Down Syndrome Association’s Buddy Walk was held in Melbourne two years ago for the first time, my nephews were excited about the event as it fell on Sophie’s birthday, and they were eager to see other people with Down syndrome so they could better understand what it was. After the event, one of my nephews asked where all the people with Down syndrome were and my sister explained that they were at the event. His comment was, “But they looked just like Sophie.” To him, Sophie was normal and so were all those other kids who looked like her. My niece Molly was so excited to have another girl cousin. She is like a big sister to Sophie and is very protective of her. Molly lives in a small country town and asked me to take Sophie to her school to meet the children in her class, as there were kids at school teasing her about having a cousin with Down syndrome. There were also a few teenagers with Down syndrome who had moved to the town and the schoolchildren thought these teenagers were “stupid” and teased them. Molly had written a beautiful story for school as though it was written by Sophie, about how frustrating it was to have Down syndrome; not being able to walk despite turning two, how she loves her family and is loved by her family, and loves to do things like swimming and to splash in the bath like a fish. This was all from a girl of 11 who had never previously had anything to do with a person with special needs. Molly wanted these kids to see how beautiful and special Sophie was, to see her as she did. When I took Sophie to the school I took some information on Down syndrome and spoke to the kids about Down syndrome and people with disabilities in general and that these people are just like them; they have feelings and those feelings are hurt when they are made fun of. Sophie also worked her charm, saying “hi” to all the kids, and giving them all high fives. In her excitement she banged into something and started crying. Molly thought this was good for the kids to see, as it would remind them that people with Down syndrome have feelings and that they cry just like everyone else. While there are times that life can be frustrating for Sophie and us, struggling to convey our message to each other, I can’t imagine life without Sophie; her happy nature, her excitement over the simplest things, her joy at learning a new word or sign, and how excited she is to see us both at the end of the day. For a long time, Tim and I were both called “Dad”, and I was trying hard to get Sophie to say, “Mum”, all the time encouraging her to use sign language. One day when Molly was staying with us, Sophie pointed to a photo of the two of us on the fridge, and signed “M” for mum, and said, “Mum.” Tim and I were both so excited, we repeated mum about 10 times each. That was the most perfect day and I still love to hear her excited voice call me mum when I get her out of bed in the morning or at the end of the day when I pick her up from childcare.
Natalie Lawlor is a public servant who works part-time in Melbourne, Victoria. Natalie, Tim and Sophie live in Melbourne’s eastern suburbs, and big brother Joseph comes over to visit on weekends.
Lessons from the J-man By Jennifer Hede
My son, Joshua, and I were recently in the 12-items-or-less aisle at the local supermarket. Directly behind us was an overwrought mother with three out-of-control children, who were running off, grabbing sweets and tearing at magazines. She screamed and swore at them in the loudest voice imaginable. I glanced over at Josh, who has Down syndrome and who was staring straight ahead with a disapproving look. He turned to me and said quietly, “Thank God we’re normal.” That’s Joshua for you, or the J-man as his brothers call him. He shares his brothers’ wicked sense of humour and has a large, engaging personality, but he doesn’t appreciate mayhem, screaming or violence. He’s a true pacifist, and certainly doesn’t see our family, or his extra chromosome, as anything other than normal. With Josh, there is little time to dwell on what could or should have been. He is who he is: funny, charming and sociable. His life may have some limitations but it is a full life. Like many young adults, he is permanently attached to his iPod and mobile phone. He manages his Foxtel IQ remote control and helps his parents manage theirs. He fiddles around on his laptop and despite only basic reading skills, he always finds the latest CDs and DVDs online to add to his wish list. He is a good companion on overseas trips, attends the gym, works part-time as a volunteer and loves movies. Josh supported his older brother as best man at his wedding not long ago. It was an unforgettable experience for him, and for us. His latest role, uncle, he has embraced with gusto and his sister will often plead with him to come over and help entertain the little ones. But it hasn’t always been this way. Before Joshua, life was good for us as a family in the late ’80s. We were busy with three children and a rapidly expanding business. But for me, at 34, the yearning for a fourth child was strong. I knew my husband thought I was crazy. But, God love him, he came around. The pregnancy seemed swift and the birth uneventful and on September 7, Joshua Leo came to play. I will never forget the events of that night. After the obstetrician and midwife had taken a long while to check the baby, the obstetrician took my hand. A gentle, learned man, he had delivered my other three children and, in fact, had been my lecturer more than a decade earlier when I had studied midwifery. He explained, using the correct medical terminology, that the baby had a major bowel abnormality and quizzed my memory of the condition. My mind raced, yes, yes I remember; major surgery required, plumbing... very fixable. And then the bombshell: there’s a chance he could have Down syndrome. Well, that’s not fixable! I wanted to scream it out but I remained silent. My husband was strong and resolute. “All will be fine. We can do this,” he said.
I didn’t want to “do this”. I didn’t want to hear it. I experienced my darkest hours during that long, lonely night. As I lay awake, I had visions of an ungainly, weird child, who wouldn’t fit in with my beautiful little ones at home, who were 12, eight and five years old at the time. I feared their lives would be ruined forever, too embarrassed to bring friends home. My life, as I knew it, was over. Tiny Joshua, at five pounds, or 2.3 kilograms, was transferred to the Royal Children’s Hospital for surgery on day two. The days that followed involved a busy routine of visiting and transporting expressed milk, but within 10 days Josh was home, with the smallest colostomy bag I had seen. I’ve somewhat lost track of the next two years. More surgery was required. The word “hectic” springs to mind. We started an early intervention program almost straight away, which was invaluable. Meeting other parents and having contact with older children with Down syndrome gave us confidence in our ability and a sense of optimism for the future. Being busy was advantageous in many ways. I had little time to dwell on what might have been. Days revolved around school and kinder pickups, tennis and swimming lessons, parent-teacher meetings and weekend sport. Josh seemed to live in the car.
I glanced over at Josh, who has Down syndrome and who was staring straight ahead with a disapproving look. He turned to me and said quietly, ‘Thank God we’re normal.’ Thinking back to the fears from that first night, I failed to consider that I would fall in love with this baby, as indeed we all did. As far as the children being reluctant to bring friends home, believe me, that never happened. And this boy, now a man, is far from weird looking; he’s beautiful and looks just like his brothers. I am loath to exaggerate and claim that having Josh has transformed us into some super-family and that everyone needs a child with Down syndrome in their midst. That would be a ridiculous misrepresentation. We are an ordinary family in every sense of the word. Josh’s siblings are strong, tolerant and compassionate individuals. I’d like to think that that would have been the case had he not been their brother, but his impact on us is undeniable. Josh is the only person I have ever met who is without envy, greed or malice. How can this fact, in itself, not have a positive influence on others? I can truthfully say that I have never returned to the despair of that first night. Of course, we have experienced frustration and disappointment along the way but we have learned to accept that such is life and manage the best way we can. Josh belongs in our family as he is. Considering his position as the youngest, it stands to reason that the five of us, together with some wonderful friends and extended family members, have over the past more than 20 years adopted the role of teaching him along the way. Of course, the twist here is that Josh has taught us all so much; about ourselves, our individual capabilities and our substance as a family. Thank you Josh.
Jennifer Hede lives in Melbourne, Victoria. She chose to give up work as a nurse when Joshua was born and has since enjoyed channelling her efforts into the family. Now she has grandchildren, her days are no less busy. 34 |
Josh is the only person I have ever met who is without envy, greed or malice. How can this fact, in itself, not have a positive influence on others?
I have accepted who he is and would not change anything about him. My son is not Down syndrome; he is Xavier.
Xavier 36 |
It’s OK to cry By Michael Harrison A few short years ago, I felt my life was in pretty good order. I had a beautiful little daughter, Laurel, who had jumped all the hurdles of good health. While I know I’m biased, it has to be said, she was “up the front of the bus” when it came to intelligence. My wife, Vanessa, was pregnant with our second child, we had recently moved into our new house in the Brisbane suburb of Manly West and, to me, it felt that this was what life was supposed to be about. At that point, I was the Rooms Division Manager at an award-wining corporate hotel. We were constantly exceeding expectations within the hotel chain; I felt good about going to work each day. Life was great and, to be honest, I could not have asked for anything more. Perhaps it was a case of naivety or being too casual about the subject of childbirth but I must admit, I did not understand the entire process. I just assumed that everything would work out. In hindsight, maybe I should have spent some time reading the pregnancy books as my wife had asked me to do on several occasions. When it came to the finer details of “the miracle of creation”, I did not have a great understanding. Sure, I knew the sperm and egg stuff but as to how many chromosomes we are supposed to have, and what would happen if the count were incorrect, I had no idea. Throughout my life, everything had just fallen into place, so why would the birth of our second child be any different? To be honest, the main thing I was expecting from our 12-week scan was a morning off work, and that everything else would be a mere formality. I can’t remember a lot of what was said on that morning in the Redlands clinic, however I do remember the words, “Down syndrome” and “1 in 3 chance”. The mood in the room turned very tense. I can also recall sitting outside a coffee shop after the appointment trying to put on a confident show for my wife, telling her we had nothing to worry about, and we would play whatever hand we were dealt. Just below the surface, I felt a terrible sense of dread. I must admit that my knowledge of Down syndrome did not extend any further than growing up seeing the people from the Northgate Sheltered Workshop on the train while I was going to school. They were overweight, wore thick glasses, dressed badly and sounded slow and simple. Worst of all, they were teased and laughed at by ignorant teenagers from the other schools. I remember thinking at the time how cruel it was but dismissed it as something that would never affect me. Now those images were coming back to haunt me and I was frightened. Was this going to be my child? I think it was early afternoon on a Thursday, three weeks after the scan, when the phone rang and a distraught Vanessa asked me to come home. The waiting was over, we had definitive results, and the reality had begun: our child had been diagnosed with Down syndrome. We were devastated.
Why is it that some men feel this compulsion to carry all the responsibility and have the misguided belief that they alone have to hold the family together in the hour of need? I felt I had to be like the general of an army in the old war movies, standing tall on the hill, watching the battle play out in front of him, all the time remaining calm, emotionless and composed. This was my duty as the male in the household and, for the good of the family, I felt I could not let my emotions out, because if I did, I was being weak. When I look at these words now, I think, “What a load of rubbish!” This charade may work well in the old war movies but in reality, I was not helping anyone. I became distant and impatient with my wife, who was struggling with the news. I was also hurting myself by ignoring my inner feelings. However, hindsight is a wonderful thing. During this emotional period, I felt that bottling everything up and not speaking about the grief and fear I was feeling was what I had to do. I even stuck a note on my work computer with the words, “YOU MUST BE STRONG!” At times during that first month, when I was alone in my office, my eyes would fill with tears as images of the kids I had seen on the train and thoughts of my child’s lost opportunities filled my head. I would then repeat my mantra, over and over again, until I had buried the emotion that was trying to escape. For good or for bad, none of us has a crystal ball to know what the future holds. If I knew then what I know now, I would have done things very differently. I now know it is OK for a man to cry and accept how he feels; it is not easy but it is not weak to be honest with yourself. In fact, it is a true sign of strength. I also know now that the family would not have gone to pieces if I had shown how I really felt. Maybe we could have handled the news of our child’s disability as a family instead of as individuals; not really understanding how the other person was coping. For this, I am truly sorry. Finally, I now have the knowledge that while I was hurting at the time the end result far outweighs the immediate pain.
I now know it is OK for a man to cry and accept how he feels; it is not easy but it is not weak to be honest with yourself. It was not until the day Xavier was born that the “emotional genie” finally escaped from the bottle. Compared to the birth of our first child, Laurel, the birth of our new son, Xavier, was easy. As I held him and looked into his eyes for the first time, I couldn’t help but feel that he did not look right; that it was obvious he had Down syndrome. I did not feel that same euphoria I felt with the birth of Laurel. As with my daughter, I whispered to him the same promise that I would always be there for him and see him through, but inside I could not help but feel empty. Then, as with the previous six months, I squashed my feelings back in the bottle and tried not to let my emptiness show. The first day after the birth of any child is extremely busy as you operate on next to no sleep, run to and from the hospital and tell everyone about the new arrival. That evening at the hospital, with my mother and grandmother, we discovered that Xavier had failed his hearing test. While these tests are in no way conclusive and would later prove to be incorrect, they did not help our emotional state. On the way home from the hospital, I had to listen to my grandmother ask what his name was every five minutes, and my mother, who meant well, telling me about the people she knew who had children with disabilities, and how many people in her church parish were offering prayers. Unfortunately, the way I was feeling, I did not want to talk to anyone and just wanted to be alone. 38 |
The constant talk in the car was pushing me over the edge. Finally, once home, at the dinner table with the relatives, I hit the wall. Trying to keep it together, I excused myself from the table and went out onto the balcony, where six months’ worth of emotion poured out. The reality that my child had a disability, and would be different, had finally hit home. How long I sat there sobbing, I do not know. I just remember my mother coming out and telling me to have a good cry, and my grandmother coming out and asking what his name was. That night in bed, I shed a few more tears before drifting off to sleep, ending the first day of my new son’s life. Looking back now, I feel that that moment on the balcony was the turning point: the dam had burst, releasing all my anxieties and sadness with it. The next morning, I woke up feeling like a weight had been lifted. Since that night, I have never again felt empty about Xavier and see him as the most amazing little boy. In saying this, I must admit that I sometimes have a tinge of sadness when I see that he is the oldest in the swimming class or when I read his low results on the physiotherapy report. However, any sadness is quickly erased with love and warmth when I hear the words, “There’s daddy,” followed by a huge hug. I have accepted who he is and would not change anything about him. My son is not Down syndrome; he is Xavier. In the three years that Xavier has been with us, he has been adorable but at the same time a challenge. He has not been a challenge because he has Down syndrome but because he is a little boy who likes to push the envelope with his mum and dad and torment his big sister. When I tell people he has Down syndrome, I often smile when I am told “how loving these kids are”. Naturally, I agree, but I also take a few minutes to set the record straight and assure them that being naughty comes just as naturally to Xavier as any other child. He is an adorable and loving child, but he is also a little boy who has temper tantrums and knows how to press his parents’ buttons. I recently had a work colleague say to me that it must be hard having a child with Down syndrome. My answer to this comment was that I was the luckiest man in the world. While my reply may sound like a cliché, it was proved beyond doubt recently when Xavier spent a couple of nights in the Mater Children’s Hospital. As I sat on his bed, watching the Wiggles with my little boy, I took a few minutes to look around the ward. Opposite us were a father and son, who had been in hospital with problems for the last week, with no end in sight. Around the bed of a little girl next to us was a hive of activity and concern as alarms were beeping and hospital staff were talking gravely about her situation. Her mother had given me a smile when I saw her that morning and you could tell now that she had a lot on her mind. As I scanned the room, I felt Xavier put his hand on my leg and noticed him give me a quick glance and smile. Maybe I am reading too much into it, but the timing of it almost felt like, in his own way, he was saying, “Don’t worry about it Dad, we’re sweet.” This moment reminded me that, while our son may have a disability, we are extremely fortunate. Like any parent, not a day goes by when I do not worry about my children’s future. There is no question that, at times, it will be difficult. Life does not always go to plan and there will be bumps along the way. However, I also know that by staying positive with the right attitude, life can be amazingly rewarding and a wonderful adventure. If we always remember to stick together as the loving and supportive family we are I know we will overcome any obstacles that confront us. I would not change the little boy we were delivered for anything in the world. We have been truly blessed. Michael Harrison works weekdays as a hotel manager in an inner-city Brisbane hotel and wife Vanessa works Saturdays as a nurse, which means Sunday is a compulsory family day with children Laurel and Xavier.
Rowan has taught us to live each day as it comes, to not rush through this life weâ€™ve been blessed with, to appreciate what life brings us and to be courageous in the face of any difficulties that may arise.
Rowan 40 |
A secret to be grateful for By Sarah Klein
Our third son, Rowan, came to us in a flurry, unexpectedly born at home and welcomed into the world by the steady though nervous hands of his Nanna. It was in those first few precious moments after Rowan’s birth that my mother, as she would later tell me, thought she suspected his secret, the secret that had been hidden for the past nine months. We spent the rest of that first day in the hospital, soaking in the beauty of our newborn, breathing in his sweet aroma, holding him close and whispering to him all that he needed to know about his family. Every so often his tiny eyelids would flutter open, revealing to me his secret, a secret that my heart heard but my head denied. No one had said anything and therefore it wasn’t true. The next day as I prepared to take our baby home, one of our midwives came to take Rowan to the nursery for his final health check. I took the opportunity to freshen up and make sure everything was ready for when Trent, my husband, came to pick us up. I then wandered down the corridor to the nursery. Walking past the nurses’ station, I heard hushed conversation about a baby, my baby; conversation that I wouldn’t understand fully until later that day. It was a phone call I never dreamt I would have to make. Even the day before, the day of his birth, when I’d seen this in Rowan’s beautiful almond-shaped eyes, I hadn’t believed it. Still, here I was, and I knew the news I had to tell Trent was life changing, something you hardly want to tell anyone over the phone, but I had no choice; I needed him in the hospital with me. “There’s been some nurses and doctors checking over Rowan,” I began slowly, and then a little too quickly: “They think he might have Down syndrome, but it’s fine. Even if he does, it’ll be fine.” Already I had started fighting for my son, determined that he be loved no matter what. Trent and I were taken to a small, light-filled room of the hospital where we sat waiting together. Another one of our midwives walked into the room, followed by a man with a quiet, reassuring presence, a man that held in his arms our tiny child. I’ll always be grateful for the way this first meeting went. The man, who would later become Rowan’s paediatrician, began by telling us what a cute little guy Rowan was and then after passing him gently to me and unwrapping his blankets, went on to show us the physical markers that had brought them to believe that our son had Down syndrome, which would later be confirmed with a blood test. The doctor’s eyes were kind and searched our faces for understanding, perhaps waiting for the collapse. I would like to think that through the tears that threatened to spill from my eyes in those moments, he saw acceptance, the love I had for my child and my fierce need to protect him. We left the hospital with swirling thoughts. I wanted to wrap Rowan up in my arms and run away with him, to some place where we wouldn’t need to tell people about his diagnosis because it simply wouldn’t matter. A place where he could grow up just like any other child, with his brothers,
doing all the things little boys do but without the scrutiny of outsiders, without people seeing him and wondering either quietly or aloud if there was something “wrong” with him. Or worse, people seeing his disability and feeling pity for him or for us. I absolutely did not want anyone’s pity! I wanted people to accept him as he had been given to us and to love him just as we did. Later that day, we told my family the news. They gathered around us in my mother and father’s dining room, and the only one who heard my choked words was my mother, perhaps because she already knew Rowan’s secret in her heart, just as I had. “They think he has Down syndrome,” I cried. In my mother’s embrace, I sobbed harder than I had in a long time, cried for what I thought I had lost, cried for fear of the unknown, cried from the guilt that was slowly building for feeling sad when we should be celebrating, cried that this was happening to my little boy and I could do nothing to make it go away. In those first few days, we began learning about Down syndrome, hungry for information, arming ourselves with all the facts so that we could explain to others what Rowan’s extra copy of the 21st chromosome meant for him and for us. We stuck mainly to Down syndrome association websites, and many times stumbled away from the computer, too upset by termination rates, health concerns and simple truths to read on, seeking the comfort that came with holding our son in our arms.
I wanted people to accept Rowan as he had been given to us and to love him just as we did. One of my biggest concerns for Rowan’s future during those days came from my realisation that he would never have a family of his own, he wouldn’t have the joy of being someone’s father. I would sit on my bed in our darkened room at night and weep over the little fellow nestled in my arms, apologising to him, wishing I could make it better, torn because I didn’t want him to have Down syndrome but at the same time knowing I wouldn’t want to change a single thing about him even if I could, our beautifully perfect son. I decided things for his future and set them in my mind: he will be afforded every opportunity his brothers have, he will attend the same schools they do, he will live a life so full and so fun that it will be impossible for people to feel pity for him. I knew in my heart that even if he couldn’t have children of his own, his life would still be filled with love. I imagined him as the favourite uncle to his brothers’ children and it made me smile. In the two years since then I’ve been able to put thinking so far into the future on the backburner. Rowan has taught us to live each day as it comes, to not rush through this life we’ve been blessed with, to appreciate what life brings us and to be courageous in the face of any difficulties that may arise. As anyone who has faced challenges in their life knows, one of our most powerful tools against doubt and fear is maintaining our positivity. In the beginning, facing the unknown requires bravery and faith, faith in ourselves and faith in those around us, our support network. It takes a brave person to stay positive and to trust that their support network will be positive in the times when they cannot. I wanted so desperately for those around us to accept and love Rowan that I took the lead into the unknown and trusted that in the times when I couldn’t lead, someone else would take the baton and keep going for me. Thankfully, there has been no shortage of support and our positive outlook has been met with an equally positive feeling among our family and friends. 42 |
Welcoming Rowan into our family has changed our lives in so many wonderful and varied ways. We are stronger individuals, more accepting of the differences in others, more open to love and more capable of loving. Trent and I enjoy a closer bond than before, a solidarity that comes from facing challenges together. We see how Rowan enriches the lives of his brothers and of the people in our support network, how the lessons he teaches us reach many different people in many different ways. When we look at our son we do not see Down syndrome, but instead, the blessing that the universe bestowed on us when his 21st chromosome triplicated rather than duplicated. This child, born with a secret, a little something extra, has brought us love, amazing friendships and a new way to see the world around us, and for that we will be eternally grateful.
Sarah Klein lives in Geelong, Victoria, and is a busy mum to four children.
Jess has surprised me many times with her ability to achieve and her perceptiveness in understanding and seeing the world for what it is.
Jess 44 |
Taking the plunge By Jan Hine
A month before my daughter, Jess, was born, I felt, for no clear reason, that there was something wrong, although my obstetrician assured me that everything was OK. Shortly after she was born, I was told she had Down syndrome and my first thought was, “Oh, so that’s what was wrong.” My next thought, ignorantly, was that she would never call me “Mummy” because she wouldn’t know I was her mother. This thought made me feel so sad. I had tried for 10 years to get pregnant, and this was what I was now facing. Jess was in a humidicrib for her first few days. It was all a blur for me as I recovered from a caesarean. But I clearly remember, on the third day, going to the nursery to see her and feeling an overwhelming love, which I had not felt for her until then. I cried, however, as I was still aware that she looked different to the other babies in the nursery. Although, at that point, I became determined to give her the best life possible and to provide as many opportunities as I could for her so she could reach her full potential. My husband had the job of telling our friends about the diagnosis, and it wasn’t until the end of that week when I phoned a friend myself, that I realised how hard it was to say the words “Down syndrome”, without crying. This particular friend immediately assured me that, “Down syndrome is one of the best disabilities to have, and you’ll be fine, Jan.” Great news, I thought sceptically. But I must say, it did reassure me that maybe things would be OK. She also reminded me that I’ve always liked a challenge, and I had to agree with that. It was hard at that point not to think about the future and to picture our family many years ahead – incredibly scary thoughts when you have had no experience of Down syndrome, or any other disability, and the only thoughts you have are negative. While I was in hospital I read a lot of material on Down syndrome and decided that early intervention was the way to start. Macquarie University was at that time running an early intervention research program just for children with Down syndrome. As it was a research program, recruitment was limited and after visiting the centre, I was keen for Jess to participate. As luck would have it, one of the children had recently left the program and I was able to enrol Jess. While I didn’t see this as a miracle cure for her, it educated me in following the stages of development that a child should attain, and to know that it may take more time for children with Down syndrome to reach these milestones but that they do get there too. In the program, I also found great support and comfort in other parents dealing with the same issues. In reality, there have been some difficult and frustrating moments over the years. When Jess started at a new school, in Year 3, the teacher had a group of apparently bright children and resented that
Jess was in her class. She gave her a space in the corner on a beanbag with some toys, and then ignored her. Every aspect of Jess’ school life seemed to be a problem for this teacher, culminating in a meeting of all the parents from that class who verbally attacked me for having my daughter in their class. When Jess was left out of activities and would say to me, “Mum I can do that,” my heart would break. Needless to say, I was advised to move Jess, and the next school turned out to be wonderful. I choose to believe now that this was an unfortunate and irregular experience. If I were to offer advice to new parents, it would be that some things are never going to work, and although you should persist in advocating for your child, sometimes an alternative is a blessing. From that day we have been fortunate with Jess’ schooling, and although Jess still struggles sometimes to understand the value of money, her reading and writing skills are excellent, and she always has a novel in her bag to read whenever she has a quiet moment.
Sadly, if I had not been blessed with my beautiful daughter, I’m sure I would have gone through life choosing to distance myself from people with disabilities. If someone had told me when Jess was born that I would be travelling overseas to watch her swim at international events, I would not have believed them, but that is exactly how life has turned out. When she was about four years old, she started swimming lessons. Being stubborn at times, she resisted all attempts to be taught and spent most lessons crying. While this was upsetting, the overriding factor for me was that she lived in sunny Queensland and she had to learn to swim. After almost two years, we found a coach with a loud voice, who said, “Enough Jess! Just swim!” And that is exactly what she did. Butterfly became her favourite stroke from early on and she has now become a 200-metre butterflier. She has now travelled overseas three times to compete at World Swimming Championships. It is so moving to see a couple of hundred swimmers with Down syndrome doing what they do best, and a great advertisement for showing the world that people with Down syndrome can be fit and healthy and become elite athletes, who represent their countries. Jess has won some outstanding awards, a couple of which she has won when competing against high-profile, non-disabled athletes. It has been a fulfilling experience for Jess and for us as parents. It’s been reassuring and fun to socialise with other parents who understand how life can be when your child has a disability. When my friend told me that Down syndrome is one of the best disabilities, although I was sceptical at the time, I have since understood what she meant. From the start we knew what we were dealing with and where to seek help and support. For parents who have a child with an undiagnosed disability, the future is perhaps more uncertain and the present, frightening. Sadly, if I had not been blessed with my beautiful daughter, I’m sure I would have gone through life choosing to distance myself from people with disabilities. I’m now more aware and can sympathise with the problems of others. As Jess’ mother and advocate, I am a stronger person. I have also met some extraordinary people along the way, people for whom I have enormous respect because of their dedication and ability to give so much of themselves. I have seen grown men cry when Jess has made a speech in front 46 |
of hundreds of people and I have cried many tears of pride and joy when I see the courage and comradeship that is so honest with Jess and many of her friends with Down syndrome. She has surprised me many times with her ability to achieve and her perceptiveness in understanding and seeing the world for what it is. I feel extremely fortunate to know that Jess is being provided with the right opportunities to reach her full potential, as I vowed for her in those early days. I also feel thankful to be reaching my potential in a life that, at its heart, involves my daughter.
Jan Hine lives in Forestdale, Queensland, and is a registered nurse. Jess is her only child. Jess has a wonderful stepfather who is always there for her.
Tiana will follow in her sisterâ€™s footsteps and win everyone over with her cheeky smile.
Tiana 48 |
My child’s lessons on life By Lyn Legge
At 35 years old, I became pregnant with my third child, Ellie. My older girls were teenagers, so I had prenatal testing to ensure everything was alright. After all, I thought, I didn’t want to be tied down to a child with special needs. The tests came back clear, although at 38 weeks into the pregnancy, my daughter was stillborn. A doctor told me afterwards that, if she had survived, she would have been severely disabled. This was no consolation. I just wanted my daughter, no matter how she may have been. I was desperate for another child and became pregnant again almost immediately. I had learnt a great lesson from the previous pregnancy, such that when I was told my blood test showed an increased likelihood of having a child with Down syndrome, I refused any more testing. I knew fully that there are no guarantees in life. Months later, our beautiful daughter Hannah was born and a paediatrician confirmed her Down syndrome a week later. Outside the paediatrician’s office, my husband and I got into our car and began to cry. We cried for our newborn daughter and how hard life might be for her. She was still our beautiful baby though; she was alive and, except for a heart murmur, was healthy. So we took our baby home, determined to give her every opportunity granted to our older girls. I had an extremely important job to do now, and that was to learn and implement all the strategies I could in order to help Hannah reach her full potential. We gained so much love, joy and satisfaction from every milestone that Hannah reached. This was the best job in the world. There is definitely something special about children with Down syndrome and we felt totally content with our new family member and the changes she brought to our lives. Along the way, some friends dropped out of our lives, but we made many new friends, particularly through Hannah’s early intervention and Down syndrome get-togethers – friends who have celebrated her latest achievements, not pitied us or felt sorry for our daughter or pointed out all the things she couldn’t do yet. When Hannah was young, she participated in all the typical preschool activities that our other girls had enjoyed; playgroup, gymnastics, music and dancing. We found almost everyone to be welcoming and happy to include Hannah. We participated in any activities that became available to assist us in helping Hannah thrive. I remember when Hannah first started to use sign language, people were amazed at this “clever little girl”. I think it helped people realise that she was a capable individual, enabling them to put aside any mistaken or outdated ideas they may have held about children with Down syndrome. Our efforts paid off. By the time Hannah was ready for primary school, she had good speech and could already read simple sentences. There was never any question that this little girl was capable enough to attend mainstream school with her friends. The school we chose was also highly supportive of Hannah’s inclusion.
By the time Hannah was four, our older girls had moved out of home and so we found that our time and energies had increased. We had heard about children with special needs being placed for adoption, and we believed these children needed and deserved to be with a family who would value and give them a stable future. At this stage, we began seriously exploring the option of adopting a child. A while later, we received a phone call asking if we would consider adopting a baby girl with Down syndrome and complex medical needs. Hannah had always wanted a baby sister and we jumped at the opportunity to make this baby a part of our family. We adopted Tiana, knowing that we would have our hands full with a very sick child. Initially, Tiana was fed through a gastro feeding tube and had such bad reflux that she could only be fed 40 millilitres of her formula per hour. She was failing to thrive and had many respiratory infections, including pneumonia. We fell in love with Tiana before we even met her. But as soon as we saw her, we knew we could never let her go. Many of our friends were supportive of our decision to adopt; others told us that we wouldn’t get another Hannah. How right they were. The girls are so different; one’s strength is the other’s weakness. Of course they both have Down syndrome, with some common traits, but their personalities are so different. The girls love each other so much. It warms my heart just to sit back and watch them playing together.
We felt totally content with our new family member and the changes she brought to our lives. There is no down time at our place, and with all the extra medical issues our girls have, we seem always to be at doctors’ appointments. Slowly but surely, we are ticking all the boxes and Tiana’s health improves constantly. The thing I admire most about my girls is that as hard as life must be for them at times, they embrace it with such enthusiasm, and I’m finding it’s contagious. The most difficult part of parenting two children with Down syndrome is not the fact of coping with their special needs, but fighting for the services and support they need to reach their full potential. We still worry about their future and sometimes wish life was easier for them, but we find it best to concentrate on their present needs and work towards their next goals, otherwise, I’m sure life would become too overwhelming at times. I couldn’t get through the day without my husband because we work as a team and help each other when things get tough. My older girls love their little sisters, and though they no longer live at home, they love being involved in the girls’ lives. Many of the things we initially worried about when Hannah was born are now irrelevant. Will she have friends or will she ever talk, read or write? Where will she go to school? She has many friends, goes to sleepovers, pool parties, ice-skating and movies with her friends, and in most ways she is a typical 10-year-old girl. Hannah is in a mainstream school, reading, writing and surfing the Internet, and exceeding our expectations each and every day. I don’t worry about these things with Tiana because I know she will follow in her sister’s footsteps and win everyone over with her cheeky smile. What does the future hold for them? Raising my two eldest daughters has taught me that you can never predict where your children will end up, and I believe that it will be no different for my youngest two girls. All you can hope for is that they are happy and doing what they choose to do. My girls are off to a good start. They are happy little girls who spread joy wherever they go. 50 |
Whenever we visit Tiana’s birth parents, I come away feeling sad that they haven’t shared in the enrichment Tiana has brought to our lives. I would never have thought I was up to the task of parenting a child with Down syndrome, but now I have become the parent of two! I wouldn’t have my life any other way. I think that things happen for a reason. If I had not lost Ellie, I probably would have not seen Hannah’s birth as the blessing it is. Nor would I have known the same joy of seeing my two younger daughters growing up together.
Lyn Legge is a bookkeeper for her husband Glen’s handyman business. Her eldest daughter, Emma, is a youth worker and second daughter, Lisa, is a disability worker. Lyn and Glen live on a small acreage near Coffs Harbour, New South Wales, and love the relaxed setting and animal life that surround their home.
The thing I admire most about my girls is that as hard as life must be for them at times, they embrace it with such enthusiasm, and I’m finding it’s contagious.
Snow angel By Carolyn Minster
Here is Perri at eight years old. It’s a winter evening at Mount Baw Baw, crisp and fresh, with the lightest of snowflakes drifting down upon us. Perri, with her arms outstretched, tilts her head back and excitedly catches snowflakes with her hands and tongue. The bliss of it all is too much and she playfully spins around in circles, arms upstretched to the moon. Her face is pure joy. As I watch my darling girl, I know in this moment that I have reached the other end of the spectrum of my emotions, that she has taught me so much about love, so far from the first bleak days of Perri’s life. The years leading up to this realisation have been eventful and mundane, good and bad, high and low, happy and sad; much the same as life for most families. Life with Perri has had moments of frustration and despair: the toilet training that seemed to drag on forever; the constant vigilance on outings with the regular occurrence of a cry going up that Perri was missing, and the family dispersing in all directions for the search; the task of persuading a very strong-willed girl to give in to the needs of the moment at hand. Consequently, I have a yearning to be able to go to the shopping centre and remain anonymous; for people not to notice us because I am chasing Perri or calling out to her or having to explain to her that we are not having ice-cream at 9am on a winter’s day. All of these things make life with Perri difficult. So why then would we say our life with her is blessed? A couple of years ago I asked my two sons if they were interested in attending a siblings program offered by Interchange, an organisation providing family support and social opportunities for children and young people with a disability. Then aged 11 and 13, they gave me a puzzled look and asked what it was for. I said that some people who have a sibling with a disability find life difficult and like to talk to others about it. They were incredulous: “But our life with her is easy. She makes our life better.” They then hastily amended the comment to, “She makes our life easy, not yours!” When life with Perri is assessed and the final balance reckoned, the positives far outweigh the negatives. This is why, despite the hardships, we do feel our life is blessed for having Perri in it. Perri’s capacity for all of the admirable attributes of the human soul is enormous. She has the biggest heart when it comes to loving others. She forgives willingly and frequently, often giving the perpetrator of her woes a hug and a kiss through her tears. As her parents, we remain legends in her eyes far beyond the age when our other children see us as uncool. Nothing melts my heart more than when Perri slides her chubby little hand into mine and says, “Love you, Mummy.” She will do this often, unprompted and obviously when she feels the swell of emotion urging her to do so. Those particular three words were once difficult for Perri to articulate, prompting a poet friend to note that they are the hardest words to say.
We have also found much to laugh about with Perri. Her humour is unique and her joy in “getting” a joke is gorgeous. However, some of the funniest times are of Perri being serious. On a recent trip to the toy shop, we discussed the pros and cons of buying a new Barbie doll to add to the collection of 50 she already owns. We negotiated that it would be OK to buy a Ken doll but no new Barbies. All around the toy shop I could hear her quietly talking to herself, “No Barbies, no. Ken, yes. Buy Ken.” Unfortunately, there were no Ken dolls, so she happily chose something else. Perri’s anticipation for an event can become a little wearisome for those around her as she asks for the tenth day in a row if the party is on today. However, nothing can match a 10 year old who claps , her hands and shouts, “Oh boy, Oh boy. I’m so cited.” We have come a long way from Perri’s first day in this world. Those first days, we were guided by medical staff who taught us to let life unfold day by day and see what happened next. I found the most effective cure for any self-pity was the care required for a newborn, who was the same as any other baby in her basic needs. When Perri was two weeks old, my husband asked, “Are we in denial or is this just not that bad?” Our expectations of an arduous life stretching before us, caring for this little one with extra needs, were not there in reality. Learning not to anticipate the negatives and not to look too far ahead, have made our life far easier.
Perri forgives willingly and frequently, often giving the perpetrator of her woes a hug and a kiss through her tears. We have had a number of people say that we must be special to have Perri born into our family. This type of trite comment does nothing but raise the hackles of most parents of children with disabilities, who are basically the same as every other family, just trying to do the best job they can. We aren’t special, but we are different, because we have Perri in our family to remind us of what is important in life, to ground us when life floats us away, and to show us how to laugh loud and often. I found this poem a while ago and it perfectly described to me how Perri lives her life: You’ve gotta dance like there’s nobody watching. Love like you’ll never be hurt. Sing like there’s nobody listening. And live like it’s heaven on earth. William W. Purkey
Carolyn Minster lives with her husband, four children and slobbery Labrador in Lower Templestowe, Melbourne. She and her husband are chiropractors.
We arenâ€™t special, but we are different, because we have Perri in our family to remind us of what is important in life, to ground us when life floats us away, and to show us how to laugh loud and often.
Brenton 56 |
A mother’s love, a child’s courage By Lisa Ashford-Potter
It was semi-final day at our place: September 9. All the family had come over to watch the Canberra Raiders take on the Penrith Panthers. I didn’t get to see much that day as I was busy in the early stages of labour. As the contractions became more intense my sister wanted to take me to the hospital, but my husband said, “If it’s a boy, he’ll hold on,” not wanting to miss the final minutes of play. And he did hold on. Brenton Craig arrived the day after. He was our first child. We had been married a short time and our expectations for him were great. I was 21 and my husband 23, too young to have a child with Down syndrome or so we thought. The day after Brenton’s birth my husband rushed into the room and asked, “What’s wrong with the baby?” “Nothing,” I said. “I’ve just been to see him in special care and everything was fine. What are you doing here anyway?” That was when he told me that he had received a call from the hospital to come straight away. Next, the room was filled with doctors, nurses and social workers. They were there to break the news. They started by telling us Brenton had holes in his heart and would require surgery. OK, we could deal with that. Then they dropped the bomb. “We think he has Down syndrome.” I buried my head in my husband’s chest and kept screaming, “No, no, no!” I could hear everyone talking but I was not really listening. “This doesn’t happen to a woman my age,” I kept saying over and over. A short time later, they took us to the Special Care Nursery and put Brenton in my arms. I passed him to his father and ran back to the room. The shock was unbearable. “My baby is dead,” I could hear myself repeating. I was terrified of the prospect of having a child with Down syndrome. By that afternoon all my family knew and they had come to console us. It had sunk in and I knew that the feeling of death was not Brenton but the death of expectations that I had built up in my mind during the pregnancy. With time, I was able to pull myself together and realised that Brenton was this tiny bundle who needed me, even more than I had initially expected. Over the next couple of months we needed to concentrate on the next step, Brenton’s open-heart surgery. Sadly, other things were happening at that stage. My marriage had broken down. When Brenton was three months old, my husband and I separated. This would be the start of bringing up Brenton as a single parent.
A month later, Brenton underwent open-heart surgery. A routine four-day stay turned into 16 days. There were complications but Brenton fought through. This was to be Brenton’s defining moment. It showed me his determination and thirst for life, qualities that would help him to thrive in the future. When Brenton reached school age, he attended a special school for the first six months of his education. It was evident early on that Brenton would be suitable to integrate into a mainstream setting. Brenton attended a regular school one day a week for the first year. By year two, Brenton was in a satellite class, in a mainstream setting, full-time. Brenton’s outgoing personality and interest in sport would be his saving grace over the years as it helped him to be accepted by his school peers. Brenton played sport at recess and lunch with others and, in Year 6, he was asked to join the school soccer team to play against other schools, showing that he was a valued member of his school community. With Year 6 drawing to a close, Brenton and I looked at high-school options for the following year. Brenton trialled at a school closer to home, two days a week. On his first day, beaming with confidence, Brenton stood in line with other high-school students, waiting to play handball. The students were a little disconcerted by this. Brenton stepped up for his turn and got a number of students out. Brenton showed those guys he was just like them; he had the same interests and talents. This would make his transition to high school a smooth one.
Brenton showed those guys he was just like them; he had the same interests and talents. Year 7 came around quickly. Brenton was excited about the prospect of high school and the students he met during his transition were excited to have him back. While at high school, Brenton studied a combination of life skills and mainstream subjects and amazed many mainstream students when he ranked near the top in three subjects for his Year 10 school certificate. In Year 10, when it was time for him to attend camp with his Physical Activity Sport Science class, his teacher expressed concern that there would be no teacher’s aide for him as there had been in the classroom. She felt that she was not specially trained and we discussed the trepidation she had about taking Brenton on camp. I allayed her fears by explaining what support Brenton would need. She was taken aback by my confidence in her to cope with it. On return from the camp, she said she would take 10 Brentons over the other mainstream children if she had to do it again. In Brenton’s final year of high school, I already knew what he wanted to do after leaving school, as we had discussed this back in Year 9. On our way home from school one day, I had asked Brenton what he would like to do when he left. Brenton quickly responded, “Work behind the scenes in movies.” Not trying to dampen his enthusiasm too much, I explained: “We all have our dream job but sometimes the opportunities don’t come, so it’s always good to have a backup plan.” After some thought, Brenton said, “I’ve got it Mum; sausage-roll taster!” We both had a great laugh because sausage rolls were one of Brenton’s other passions! Since leaving school, with interests in sports and media, two uncommon job areas for a person with a disability, Brenton’s dreams have come true. Brenton now works as a volunteer for a sport and recreation service. He assists the coaches in providing the Sports Ready Program to school-aged children with a disability. He is a role model to these children and inspires them to achieve. 58 |
Brenton has provided hands-on awareness days at our local university to students studying physical education. He is an orange belt in Judo, has his Beginners Principles Certificate in coaching, and a NSW Rugby League Western Sydney Academy Inclusive Sports Volunteer Certificate. This has led to him assisting in coaching and mentoring others with a disability, as well as a position as drills coach with the local under 12s - 15s junior rugby league teams. Brenton was awarded the NSW Rugby League Inclusive Volunteer for 2010 and Volunteer of the Year for 2011. He has observed behind the scenes with the National Rugby League and Channel 9 broadcasters on match day, and assisted with lighting for a local theatre group. Brenton is also a member of the Score Dragons rugby league team and the White Knights Football Club, a soccer team for people with special needs. He is a member of his local bowling club and joins his fellow patrons every week for a social get-together. Brenton also surfs and snowboards. He is a valued member of the Northern District Tigers AFL Club and presents an award in his name each year to the most improved player. He is a part of his community; he belongs. Honestly, I thought all this would be impossible as Brenton has severe verbal dyspraxia as well as mild motor and oral dyspraxia. This makes communication very difficult for him. He can only say, “Mum” and “No,” clearly enough for others to understand. The opportunity to work in an area that relies heavily on communication seemed far-fetched. But Brenton, being Brenton, had his eyes set on it. He has brought so much to his own life, but the impact he has had on my life, and others, has been immense. Brenton is an inspiration to me, my family and many in our community. I wouldn’t change a thing about him because Down syndrome is only a small part of the person Brenton is; it is not what defines him. Brenton has achieved far beyond what I imagined he would on that first day of being told he had Down syndrome. I will be there each step of the way, supporting him wherever and whenever he needs it. It just goes to show that with a mother’s love and a child’s courage anything can be achieved.
Lisa Ashford-Potter lives in Wollongong, New South Wales. She is a Living Life My Way Champion, has worked in the disability Community Welfare sector for over 18 years and is the owner of Chatter Hands, a service assisting people with a disability and families to plan their future through Person Centred Planning and Self Managed supports.
Oscar 60 |
How could this happen to me? By Sarah McEwen
My life has been such a surprise to me. If someone had come up to me in high school and told me that I would get married in my teens, move to the other side of the world and give birth to a son with Down syndrome, I wouldn’t have believed them. I would have been scared of this particular future. But living that out over the past decade has, in fact, been the most wonderful surprise. I met the Aussie man who would become my husband a week after I graduated from high school in Indiana. He was travelling throughout America. We immediately knew we had found something special in each other. After the initial shock, our families agreed we had a good thing going together and, to make the visa process easier, I was married at 19. We lived in the United States for the next seven years and shortly after the birth of our daughter, Eleni, we moved to Australia. As homesick as I was, I loved living in Australia. And we were excited a year later to find that we were expecting again. After a casual conversation with the wife of my husband’s childhood friend, I chose to decline prenatal testing at the 12-week stage. They had only just recently given birth to a boy with Down syndrome. Their son’s condition had been picked up early in the screening process. And while they were always steadfast about proceeding with the pregnancy, they had found it especially hard dealing with the all medical information, often negative, without having yet met and held their baby. I figured I was only 28 years old and, if something were “wrong”, I would rather find out after I had my baby there to hold and love. Ignorance was bliss, until the 20-week ultrasound (I had mine a little late at 21.5 weeks). A doctor from the hospital where we had had the scan rang me the next day, asking me to come in and see him. It was inconvenient for me, but from the way he kept urging it was clear it was important. Thankfully, my husband was able to get off work and join me in the doctor’s office. There, in clouded language, the doctor indicated that our baby’s nuchal fold had measured outside the normal range and was a hard marker for Down syndrome. He said we needed to immediately book an amniocentesis as we only had a few days left to terminate the pregnancy. (At that time, you could only terminate at up to 22 weeks.) It felt like I was riding the Spinning Teacups, but I remembered that an amnio carried a small risk of miscarriage. I knew we would not terminate no matter the test’s outcome and I was scared to risk my pregnancy just to determine the diagnosis before birth. We declined and left the bewildered doctor behind us. The pregnancy continued to play itself out. I had my up and down days as to what future this child might bring us. We told family and a few close friends that Down syndrome was a possibility but, still, we didn’t really dwell on it.
At 7.21am, a few days before Christmas, Oscar William Reid McEwen came bolting into the world. As they set him on my chest, I remember thinking that his head was like a perfect little ball. As everyone gathered around to take a first look, my husband asked if it looked to me like Oscar had Down syndrome. I had completely forgotten. As I gazed into his blinking almond-shaped eyes, I said, “Yes.” Those first weeks are still a blur. Publicly, we were extremely positive from the first. In my heart however, I was broken. How could this happen to me? Doesn’t this sort of thing happen to “special people” who are magically equipped to handle this? I certainly know I am not one of those special ones – I am one of the weak, terrified ones! Waves of sadness, fear, guilt and doubt washed over me. I wondered if there would ever be a time when I wasn’t sad. But like the rings dissipating from a pebble (or what felt like a boulder) thrown in a pond, the waves of emotion gradually grew further and further apart. I slowly resurfaced to realise that, not only could it happen to me, it could be a pretty great thing to happen to me. Previous to my son, I had never spent much time around a person with Down syndrome. I had no idea what it would be like to have a child with a “low IQ”. I didn’t know what part intelligence would play in making a person who they are. I think that is where part of my fear came from. I knew he would be different from me and I could not expect him to have the same life as me. The unknown was frightening.
Oscar loves to do something ridiculous, such as put in crazy false teeth, hang a noodle off his nose or walk around with his sister’s flowered headband on. Oscar is now four (and a big brother to two-year-old Pippa and another one on the way!) and I’m still figuring out what having a lower IQ actually means for Oscar. There have been some delays in his speech and a few concepts, but mostly I am amazed and delighted at how clever and determined he is. I am constantly underestimating him. I used to be able to keep the remote control out of his reach, but he figured out that he could take his shirt off and use it as a whip to knock it off the ledge, giving him full access to all the channels at a nice LOUD volume. Don’t get me started on the car seat. That child is determined to roam the car. Over the years we have invested in so many “Houdini straps” and other contraptions to keep him in his seat. The boy is too smart. We currently have a red belt clip cover that he can’t undo, though whenever he gets hold of it he hurls it out the door, hoping it won’t be found and he can regain his freedom. Oscar has a great sense of humour. It started young when he began to suddenly “fall asleep” in his car seat upon arrival home. He got the loud snoring down pat but he could never quite remember to keep his eyes shut, making it even funnier for us. Oscar is the master of the deadpan face. He loves to do something ridiculous, such as put in crazy false teeth, hang a noodle off his nose or walk around with his sister’s flowered headband on. He’ll casually draw attention to himself with a grunt and then pretend, with a little twinkle in his eye, that nothing is out of the ordinary. He has also mastered making his little sister laugh till she can hardly 62 |
breathe by doing ridiculous things like walking into walls and falling down with flair. (Why do kids find that so funny?) I dread the day he learns his first knock-knock joke. Oscar is amazingly creative. He loves to play imaginative games. A favourite is pretending to be a dog (or tiger, dinosaur or frog). He crawls around wagging his tongue and will fetch on demand. His big sister loves to make a lead for him and take him for a walk to their playroom “park” for a picnic. He loves to play with his sisters and has a great bond with them. He becomes the most serious patient when they play doctors and will let them poke, prod, roll and wrap him in bandages. (If only he were that patient with me.) He loves to have a turn checking their heartbeats and temperatures, though he hasn’t quite mastered applying the head bandage without blinding his patients. Oscar has a few DVDs he loves, one in particular that features a music concert for children. His memory is amazing and he will sit with his ukulele and act out the entire concert, complete with hilarious costume changes from the dress-up clothes. He has family traits that are so strong it is obvious to most just how much he is a part of our family (and meant to be). I don’t just mean he looks like a McEwen (he sure does), but he has the quirks and mannerisms of his kin. When he first learned to walk, he walked everywhere with his hands folded behind his back – like his father and grandfather. Oscar also makes his hands and fingers into little “characters”. He has them scurry around and talk, hide and surprise each other, and occasionally surprise other people. I am told his uncle did the same thing as a child. Oscar has also “inherited” from his big sister the sassy head tilt with an eyebrow raised, followed by a roll of the eyes – a family trait we might be happier to part with. Each of my children has shaped me in some way, but Oscar probably the most significantly. Before I had him I would have said that I was a pretty balanced person, with my priorities in the right place. Part of what was shattering about having him was discovering the things I had unconsciously overvalued; beauty, intelligence, the expectation to do well at school and that my children would automatically grow up to have a spouse and children of their own. One of the things I treasure most about Oscar is that he has enabled me to totally redefine beauty. Sometimes I imagine I feel the way a great art critic must feel upon discovering some unknown and incredible talent in a remote village. My idea of beauty – not just appearance but as a way of living – was so unoriginal before. I have made a great discovery in the beauty of those captivating almond eyes. His small nose is perfection and I love to kiss the back of his neck – right where the doctor found the enlarged nuchal fold. I have the privilege of looking at the world differently now. Once I might have tragically thought, “How could this happen to me?” But now I ask in thankful awe (like I’ve won the lottery), “How could this happen to me?”
Sarah McEwen is the mother of four children, Eleni, Oscar, Pippa and baby Willa. She and her husband are teachers and they live in Geelong, Victoria.
Joshua is making his presence and personality so clearly felt that it (Down syndrome) just seems like a background detail, just a part of who he is.
Joshua 64 |
Why do I feel this way? By Rachelle Jayne Mathews
Was I in denial? Why did I feel so joyful when all the mums I was reading about initially struggled with the diagnosis? Was it because it had taken us more than eight years, and the help of IVF, to start a family? Or maybe it went back to the time when we were in the adoption pool and had been given a checklist of what we would welcome into our family, and we decided we would be open to a child with Down syndrome. Maybe it was because my husband had already taught a child with Down syndrome and regaled me with her antics. Or was I just a happy, glass-half-full kind of person? I gave it some more thought. I could clearly remember the moment, when I was 16, lying on my bed looking at all the fashion cutouts adorning my bedroom walls and thinking how happy I was. The question, “What if you have a baby with Down syndrome one day?” popped into my head. “I would feel honoured, chosen, special,” was what I thought. Whatever the reason, I was happy. It wasn’t all plain sailing though. During the water birth, Joshua’s rather short umbilical cord had wrapped so tightly around his neck that the midwife couldn’t unhook it with her fingers. So she hit the emergency button and cut the cord while he was still inside me. With still no progress, she literally pulled him out. The crash cart turned up. “I need help!” I heard my midwife yell. Active resuscitation began on Joshua, with Paul and I still in the birthing pool. “Please, please, please,” I begged, with my hands clasped and tears streaming down my face. Paul quietly said, “God is in control.” I was comforted but still kept begging. My midwife said, “He’s breathing!” Joy! A while later, he was placed on my chest. As he was lowered, I saw his neck and his eyes. “He looks a bit Downsy,” I said, stating what I could see. Later, my midwife said, “I can see some signs too.” A few hours later, I was tucked up in bed, with Joshua in a little cot beside me. The birthing centre was full, so I couldn’t be moved out of the birthing room, and there was only a couch for Paul, so I told him to go home and get some sleep as it was still night. As dawn gradually broke, I kept reaching in to check that Joshua was still breathing. Was it just me or was he a bit cool to the touch? I kept checking him, then pressed the buzzer. We unwrapped him and I held him to my chest. Joshua and I were covered with warm blankets and the heating was turned up. He was still cool. The duty staff went for advice, then it was decided; we needed to go to the Newborn Intensive Care Unit. Later, as Joshua lay basking under a heat lamp with all manner of cords attached to him, the specialist told us what indicators of Down syndrome she could see. They would do a test but we wouldn’t know the results until later in the week. Meanwhile, the other tests began. He was cleared of bowel complications. Joy! He was cleared of heart complications. Joy! No surgery required. We stayed there for nine days but in the end they let us take him home with a big oxygen machine, just while his lungs finished developing. I was so happy to be home with him.
Messages of support were flowing in; we had meals brought around for the next month, which was fantastic socially as I was stuck at home with the oxygen machine. I did nervously venture out a few times with the portable tank they had provided. I was so exhilarated the first time I went for a walk with him and sister Mikayla in the double pram that I asked a stranger to take a photo to mark the occasion. We got talking. “So you mustn’t have known,” she said. I understood what she was saying and was quite surprised at what she was insinuating. “No,” I said. “But we wouldn’t have thought twice about having him anyway.” She then quickly changed her tune to, “He’ll bring you so much joy.” There were a few insensitive comments. “Oh no!” one friend texted my mother when she heard. I was taken aback; we had had so many positive reactions that this one felt out of place. “I’m glad I dodged that bullet,” said another friend who had had children in her late 30s. I remember one day suddenly realising I had been standing stock-still staring out the window in a daze. I had just read about Alzheimer’s disease being something Joshua had a higher chance of facing later in life. What could I do about that? Nothing. Worrying about it would get me nowhere. All mums worry about their babies to a certain degree. So I snapped myself out of it.
It struck me that with the captivating personality I could see emerging, Joshua would have more friends than he would know what to do with. When he was three months old it struck me that with the captivating personality I could see emerging, Joshua would have more friends than he would know what to do with. At seven months old that appears to be the case. It’s not politically correct to compare your baby with other babies, but I think every mother does it anyway. It seems Joshua is doing very well indeed. Time after time I think, “the therapist won’t see anything new this time,” and then Joshua will pull out the goods for her. “Is he sitting?” she’ll ask. I’ll say, “No”, and then she’ll put him in the sitting position and there he’ll sit, putting his arm out to prop himself up when needed. She’ll put him into the crawling position. Joshua surprises me by drawing his knees up, pushing his bottom in the air and driving himself along the carpet. So the therapist visits are a fun time in our house. Mikayla loves to play with the exciting toys Eleanor brings with her. I’m so excited to see what the future holds. I can’t wait until he starts to speak. He already makes us laugh so much with his antics. When he sees me coming to get him out of his cot, all four limbs go wild in what we call his “victory dance”. He’s hilarious in his jolly jumper, getting so excited when he really gets bouncing. He loves to chat with, “whooo whooo” being his favourite conversation starter. I’m pretty fussy about what he wears. I’ve definitely spent more money on him than I did for my daughter, but he’s also been showered with gifts too. I actually don’t think about the Down syndrome much these days. Joshua is making his presence and personality so clearly felt that it just seems like a background detail, just a part of who he is. My husband has just got a fantastic job and we are relocating to the far north of New Zealand to live by the beach. Joshua always goes wild in the bath so he is going to love the warm ocean up there. We are one happy family. I’ve still got four embryos in the freezer. I hope we get lucky again. Rachelle Jayne Mathews lives in Hamilton, New Zealand, and was a practice manager at a law firm before having her children. Her husband, Paul, is a primary school principal. They did “get lucky” again via IVF and now have another baby boy, Luka. 66 |
My early fears when I found out Hannah had Down syndrome are a blurry memory; the times of fear and sorrow have grown hazy with all the normal moments and all the play and games that have happened as my child and I have learnt and grown together. Shelley Phillips | Five Dock, New South Wales
Iâ€™ve learnt to relax and accept that Jackson will achieve everything he needs to when he is ready to do so.
Jackson 68 |
A change in perspective By Katie Kenny
Before Jackson was born, I was unaware of how blessed I was. My husband and I had been living in ignorant bliss. We enjoyed our comfortable lives with our healthy little girl. We had no reason to believe that the arrival of our second child would be any less happy or any more eventful. An hour after Jackson was born, I was trying to feed him when for the first time, I really studied the face of my son and knew without a doubt that he had Down syndrome. Suddenly, my perspective changed. My feelings of post-delivery peace and bliss were replaced by pain and fear yet, at the same time, a determination that, no matter what, I would do anything to help my son achieve his best life. In the hours after as I tried to rest, my mind wouldn’t stop racing through everything his life, and ours, would now entail. I had a cramp on one side but I just couldn’t roll over to face away from my son, because I wanted him to know that I loved and accepted him, regardless of how he’d been put together. Before Jackson arrived, I was a control freak. I was in charge of every aspect of my life, and my daughter’s (or so I thought). I had been a hands-on mum right from the start and expected I would also do everything for my son. By the time Jackson was five hours old, however, they had taken him to the Special Care Nursery to give him more oxygen and medical care. By the time he was 12 hours old, I could barely touch him because of all the tubes and wires he was plugged into. At 15 hours old, they took him to a bigger hospital with better facilities. I became aware of how truly helpless I was. My perspective changed again; the Down syndrome wasn’t really such a bad thing, as long as we could get him healthy. Eventually, after 11 days, and multiple specialists and diagnoses, we were allowed to bring our fragile son home. The whole time we’d been in hospital I’d sat by his bed watching his oxygen levels rise and fall. I’d been desperate to have him healthy enough to come off the oxygen and come home. Finally, the doctors realised it wasn’t going to happen that way so they sent him home attached to an oxygen bottle. I believed it was a short-term measure, although none of his specialists could tell us for sure why he needed the oxygen. After months of going to weekly or fortnightly doctor’s appointments, hoping each time that this would be the end of the oxygen, we were sent to a new specialist. As a result of more tests, we discovered the reason for the oxygen requirement: sleep apnoea. We also discovered that for those early months, we had not been giving Jackson enough oxygen. Our perspective changed again; no longer were we desperate to get rid of the oxygen, instead, we just wanted to make sure Jackson could breathe well enough to develop. With an increase in oxygen, Jackson began to flourish. Gone was our sleepy, floppy baby, replaced by a curious little boy who wanted to experience the world. No longer did we see the oxygen
bottle as an enemy, but rather an ally in our battle to achieve the best for Jackson. When we finally disconnected the oxygen bottle for the last time, 16 months after first leaving the hospital, it was hard to remember why we’d been so concerned about taking the oxygen home. Jackson’s health was fragile at the beginning. It seemed that we were constantly in and out of hospitals and waiting rooms. I would often hear people complaining about events in their lives and I would inwardly groan. How could they complain? Their problems were so minor in comparison to what my son had to face. I was so depressed about everything that Jackson had to battle through, and the pity party about how our lives were progressing was in full force. While Jackson was undergoing tests, he and I spent a night in a babies’ ward in hospital. That night, I met some very brave mothers, who had spent weeks and even months there. Some of those little people had journeyed no further than travelling from one ward to the next. From that night, my perspective changed again. I realised how good we actually had it. Our problems were so minor and, in comparison, Jackson’s health was so good. I was finally able to feel empathy again for those who suffered so much more than we did. I realised everyone’s ability to deal with life is related to what they know. Being a mother to Charlotte, before Jackson’s arrival, I felt that milestones were vital. I read each book and article I could find and was secretly delighted every time my clever little button hit a milestone before her peers. Jackson’s arrival changed my perspective and made me realise how pointless the competitive mothering and measuring of milestones truly were. I’ve learnt to relax and accept that Jackson will achieve everything he needs to when he is ready to do so. This hasn’t been an easy lesson, and I still feel pain watching his little friends leave him behind. I feel impatient for him as he tries to reach a toy, knowing that he can neither crawl nor walk to it at an age when my daughter was already running and jumping. I know, however, that as he continues to develop his new skills, I will also continue to develop my new virtues of patience and acceptance.
I just couldn’t roll over to face away from my son, because I wanted him to know that I loved and accepted him, regardless of how he’d been put together. In my pre-Jackson days, I would never have described myself as a strong person. I did my utmost to avoid confrontation of any sort. I caved in to pressure in most situations and was the queen of complaints when things weren’t going my way. In the weeks after Jackson’s birth, I found my perspective changed once again. I discovered that I had the strength to stand up to anyone (even heads of medical departments) in order to ensure that all of my son’s needs were catered for. I found that I could go without sleep for days before falling in a heap. I learnt that I could deal with Jackson’s terrifying medical situations time and again. Most importantly, I realised that I could, and would, love my son no matter what, and together we would overcome any obstacles, regardless of the circumstances. Life before Jackson seemed very full. It seemed that our social circle, and days, were as occupied as they could possibly get. Jackson’s presence in our lives has changed that perspective as well. Through him we have had the privilege of meeting a range of wonderful new people; doctors, 70 |
nurses, physiotherapists, speech therapists, early intervention specialists, and other parents experiencing the same wild ride as us. We have also had the opportunity to evaluate other relationships. Some relationships have strengthened through the amazing support friends and family have offered. Other relationships have weakened, or died off completely, as the ignorance and lack of compassion of some people became apparent. The start of Jacksonâ€™s life was anything but easy. It was a terrifying roller-coaster ride of emotions and included the most amazing learning curve. However, through it all, I have developed a new perspective of life. I now have a deeper awareness of my strengths and the many blessings and incredible love in my life. Jackson has helped me to become a much stronger and healthier person, and Iâ€™m so grateful that he is in my life.
Katie Kenny lives in South Australia and is the mother of four children, Charlotte, Jackson, Lucy and baby William. She shares the pleasure of parenthood with her husband, Sam. Prior to children, Katie was a primary school teacher and completed her training as a special education teacher while pregnant with Jackson.
The most beautiful rose By Judy Ollis
The icing on our big but beautiful cake, Tiana Rose Ollis, made her grand arrival two weeks ahead of her due date. That final push was so empowering. After all, this was the last time I’d be pregnant and, particularly, go through the pain of labour. As the obstetrician laid Tiana on my chest, I double-checked to make sure she was, in fact, a girl. To me, she was perfect in every sense of the word. Although smaller than her four brothers, Jayden, Mitchell, Cooper and Bailey or her sister, Taylah, had been, she was still a nice way to finish; a beautiful, petite, little miss. As I spent the next couple of days getting to know my gorgeous daughter, I lapped up every single cuddle because I knew, once home, I’d be sharing her with the rest of the family, especially big sister Taylah. Taylah had longed for a sister as much as I’d longed to give her one. Daydreaming about all the girly things the two would do together made me beam; shopping, makeup, jewellery and, of course, boys. The day I was to leave the hospital started like any other day as I happily packed our things into my suitcase. I was excited about going home, especially since it was Mother’s Day and I would be spending it with all my children. As I packed, my obstetrician came into the room. He asked if he could look at Tiana. That wasn’t a problem; after all, we were going home. As he looked her over, he asked me if I’d noticed anything different about her compared with my other children. Tiana had seemed perfect to me, even more so as she was a fantastic sleeper, which my other children hadn’t been. He went on to say that the nurses thought she might have Down syndrome. What was he telling me? My head started spinning. Suddenly, my world came crumbling down. The floor opened up and I felt like I had dropped into an abyss of overwhelming sadness. Once home, the next two days seemed like an eternity. I just went through the motions of being a parent to all my children without giving away anything emotionally. We waited for the phone call from Tiana’s paediatrician to confirm what I knew in my heart was already true. When that call finally came, I just looked at my husband, Wayne, as he nodded, and the tears started streaming again. As the blame game started in my head, I decided that it had to be my fault. If only I hadn’t wanted another girl so much and just wanted a healthy baby, we wouldn’t be going through this. I felt like I was being punished. As the next few days went by, I started to mourn for my girl; mourn for all the things that I thought she would now not achieve in her lifetime. Going to see her paediatrician didn’t make her future sound any better as she went through all the things we should be aware of: thyroid, heart, bowel and respiratory issues, for instance. It was difficult to see the light at the end of the tunnel as we were then sent to the Royal Children’s Hospital, in Melbourne, for a heart scan. Tiana was nine days old
and had, in fact, been born with a heart defect, an atrioventricular septal defect, which would require open-heart surgery in the next two months. To be honest, hearing this news scared me more than finding out about her Down syndrome. The path to Tiana’s heart surgery was a rocky one. We nearly lost her twice to a particularly nasty bout of bronchiolitis. Her sickness had put a huge strain on her heart and lungs. We were informed an hour before the heart surgery that there was a chance that Tiana may not make it through. True to the resilient form we’ve now come to know and love about Tiana, she conquered her surgery and recovery and we haven’t looked back since that day. Tiana has reached every milestone with gusto. She also has this amazing ability to draw everyone into her world and make them feel loved and, yes, that smile could melt the hardest of hearts. Our girl is as girly as they come. She loves her baby dolls although they must always be naked. She wears her jewels, pretty clothes, and everyone’s shoes are fair game. She especially loves being in big sister Taylah’s room and getting into her make-up and perfumes, which doesn’t always go down well with her sis. Tiana also loves it when she and Taylah practise their dance routines on the lounge-room floor. Tiana shares an amazing bond with so many people but none more so than her family. Her daddy, “Ee”, as she affectionately calls him, gets a rock-star welcome every time he comes home from work. Tiana also idolises Jayden, Taylah, Mitchell, Cooper and Bailey, as they do her. I know as she goes through life she’ll have this amazing support system behind her, which also includes her grandparents, aunts, uncles, cousins and the beautiful, kind-hearted and loving families we’ve had the absolute pleasure of meeting since having Tiana.
We will always be in Tiana’s corner, cheering her, guiding her, but most of all loving her. Tiana has achieved so much over the past six years. She’s attended mainstream kindergarten, where she’s supported by her aide, and she will be starting mainstream school next year, two things I wouldn’t have thought possible all those years ago in my darkest of days. She has also started dancing this year with e.motion21, a dance group for people with Down syndrome, and she loves it. (Although I think she loves seeing her good friend, Clem, and getting cuddles and kisses even more so.) We couldn’t be prouder of Tiana and her achievements thus far. She amazes us constantly. She is stubborn, but we’ve seen how far it has taken her already in life, and know that it will continue to take her a long way. When school does roll around next year, there will be tears, not of sadness but of pride. We will always be in her corner, cheering her, guiding her, but most of all loving her. None of us knows what life holds, what twists and turns may be around the corner. I want no more, or less, for Tiana than I want for my other children. I wish each of them great success, happiness and good health. Most of all, I want them to take time to embrace the small things in life because without those we really can’t achieve the bigger things. When we moved into our house, we planted the most beautiful Iceberg roses, eight in all. Not long after planting, one snapped off at the base. We never got around to replacing it. In its place grew the 74 |
most beautiful red rose. Although it’s a bit different to the others, it’s just as stunning. My husband, Wayne, recently pointed out how these roses were like our family. I’d never really thought about it that way before. But it rang true. Tiana Rose, you are the most beautiful rose in our garden. We wouldn’t have you any other way.
Judy Ollis is a busy, stay-at-home mum to six gorgeous children. She is married to Wayne and the family lives in Geelong, Victoria. They barrack for the Cats football team, and Judy loves her other role as facilitator of the Down Syndrome Family Connections Group in Geelong.
You soon realise, in Charlieâ€™s company, people are far more important than things.
Charlie 76 |
Adventures with Charlie By Nadine Grootenboer
There is a commotion as our fourth child appears, sooner than the obstetrician had been expecting. This is my fourth caesarean, and I have just been sliced open when our baby’s head pops out. There is laughter all around as we wait for the rest of our baby to emerge. We didn’t know then that our fourth one would be a boy. We also didn’t know that Charlie was arriving with an extra chromosome. A few minutes later, the obstetrician exclaims: “It’s a boy!” My husband, Matt, and I look at one another and smile: Charles Henry. Charlie, welcome to our world! You are our third boy and fourth child. Your big sister will be unimpressed by your maleness, but she will love you upon meeting you. Seconds later, I am handed Charlie, wrapped so tightly I can barely see him. Matt laughs, “He’s nothing like the others.” We both laugh, our joy at meeting him finally bubbling over. “His face is broader, flatter. His eyes are also different to the others. Are you sure he’s yours?” My husband’s laughter echoes around the operating theatre. The laughter doesn’t bounce back. There is a stillness in the room. The staff who had earlier joked so casually now seem withdrawn, quiet, unable to meet our eyes and share our happiness. Fleetingly, I think they all seem way too focused on the job in front of them; stitching me up and tying those tubes so there will be no more little Grootenboers. The tube tying continues while Matt and Charlie leave for the weigh-in at the nursery. A little later, the blue curtains are pushed back as our paediatrician and his registrar stride up to my bedside. The registrar has been in the theatre but the paediatrician has been elsewhere. In the 30 seconds before the paediatrician speaks, time seems to stop. It is all happening so fast, too fast for me to process and yet, I instinctively know something isn’t right. There is a pause before the paediatrician speaks, like when a storm is about to break and there’s that first clap of thunder. I am aware of eyes, many eyes on me. Matt is standing at my bedside. There is something I can’t read in his eyes, an urgency, a sadness, a need to speak before this man in the white coat does. I can sense Julia, my recovery nurse, hovering, watching, waiting, ready to step in and care for me. But the words come before I have a chance to put all these things together. I just want to know where my baby is. The questions are spinning around inside my head. “Where is Charlie? Why haven’t they brought him here for me to feed? I want to feed him. I need to feed him.” Then the words come: “There is no easy way to tell you; your baby has Down syndrome.” What? My shock hits like a wave in a storm that crashes wildly on the beach. How? Images flash through my brain. I know what people with Down syndrome look like, but what does it all mean? What do I know about these two words? What will he be like? My voice says calmly, “What sort of a chance does he have to live a normal life?” This is not what I want to ask, it’s worded wrong, but I don’t know what else to ask. I’m not even sure what it is I need to know.
“Depends on your definition of normal,” says my paediatrician. His words hurt. Can’t he do this in a kinder way? Can’t he see that’s not what I’m really asking? That I don’t know what to ask, but I need to know something? I need reassurance, of what I’m not sure. The doctor and registrar leave, and my husband goes to be with Charlie. He is now under a plastic dome, getting the extra oxygen he needs in the Special Care Nursery, where I will see him shortly. So now Julia cops the wave I’m riding, that’s pulling me down and slamming me into the sand. “I wanted four. Matt was happy with three. I’d convinced him only nine-and-a-half months earlier that I wasn’t finished, that I really wanted another child. I was even willing to work full-time for a school term to bring in the money to buy the car for an extra child. And now it’s my fault this child has Down syndrome. It must be. What is Matt thinking? How is he coping with this? When did they know? What does this mean for us?” The questions spew from me, unchecked. Julia is gentle, kindness itself, our shared faith so tangible. I thank God that Julia is the one looking after me. She was my nurse after my third child, Ned, only two years earlier. We go to church together, and now we are drawn together with God as our anchor as the news sinks in. I feel that I can almost touch God’s love enveloping us, reassuring us both. In those moments that I share with her, with my head and heart reeling with the news, I am overwhelmed by the knowledge that this is God’s will for our lives. That God is in control even now and that this little boy will be a blessing. I’m wheeled into Special Care to find our baby wired up and under his plastic dome. Matt is there, waiting to see how I’m coping, my thoughts now are only for him as his are for me. We are shocked and surprised by Charlie’s extra chromosome, but not grief stricken. In those few moments before we face everyone else, we realise that we can do this, parent Charlie, and that we’ll lean upon each other, drawing strength and assurance that we are in this together.
There is a pause before the paediatrician speaks, like when a storm is about to break and there’s that first clap of thunder. Our other children, Will, Josie and Ned are outside in the ward with Matt’s parents, waiting to meet their little brother. Matt brings them in while the nurse lifts Charlie gently out of his dome, tubes running off him and an oxygen tube carefully placed near his nose. We tell them about their new brother. “Charlie has Down syndrome. It means that it might take him a bit longer to learn things, but God has sent him specially to us.” Will, our big boy with his gentle heart, holds Charlie. He pokes his tongue out, copying what Charlie is doing and says, “That’s OK, we’ll help him.” His comment brings tears to the nurse and to our extended family also in the room. I look at our other two, Josie, our strong and determined girl and mother hen to her brothers. She will be Charlie’s protector, defending him against the unkindness of this world. Ned, our relaxed and joyful third child, will be Charlie’s playmate. He’s patient and persistent. He taught himself to jump by doing it over and over at age two. He’ll be the one to throw a ball again and again until Charlie can catch it. My friends come in pairs. It’s too hard; they are scared, afraid of how they’ll find me. They are unsure what to say, how to react. I can read the relief in their faces as they talk with me and meet Charlie. I learn quickly that my reaction will determine the reaction of others. 78 |
Two days after he’s born, Charlie is moved into my room and I no longer have to trudge up the corridor to Special Care. He is still connected to the oxygen saturation monitor, its light gently brightening the skin on his foot and it beeps wildly every time he stirs. But he’s mine, finally, all alone just the two of us, and so I stare. It doesn’t take me long to forget about “those eyes” and to see and love Charlie, his tiny hands and toes, his even tinier ears and his little tuft of hair that sticks straight up. I realise then, so early on, that I’m thankful for this revelation, that I won’t see the Down syndrome; I will just see Charlie, my beautiful boy. Sure, there will be others who will only see the Down syndrome, but we hope there will be many who will just know him as Charlie and will see all the wonderfulness of him. My prayer is that they will take the time to know his likes and dislikes, his personality and quirks, just as they do our other children. Charlie is nine months old now and those early days seem so far away and yet it feels like it was only yesterday when our youngest arrived. God has been gracious in providing us with fabulous support, family and friends and the medical and early intervention staff involved with Charlie. There are many who celebrate with us at Charlie’s achievements. My diary has quite a few extra phone numbers and there are weeks when it feels like we go from one appointment to the next. Next week, Charlie will have grommets inserted and possibly hearing aids fitted. We think he’s in for a shock when he’s able to hear all the noise that is going on in our house. Already Charlie has taught us many things and helped us to re-evaluate what’s really important in our lives as a married couple and as a family. He’s teaching me to be more patient, that every little achievement is worth celebrating, that success doesn’t necessarily have to look one particular way and that there are speeds other than flat-out. Charlie has a smile that melts your heart and, if you take the time with him, he’ll beam that smile at you and crinkle those gorgeous blue eyes in absolute delight. You soon realise, in his company, people are far more important than things. Life is busy with four children. I’m not afraid now of the future. I’m realistic enough to know there are going to be challenges, but I think there’ll be challenges with all of my children. I need to let go of the worries that I can’t control. Today, my worries are about when Charlie will crawl and walk, how long it will take him to say that particular sound, shake that rattle, respond to my songs. Tomorrow I’ll be worrying about what Charlie will be like as he gets older, what he’ll do for a career, where he’ll live. I’ve realised that I don’t dwell on these worries for my other children and that Charlie is as much an individual as they are, so I need to let these things go. There are too many unknowns that I can’t control, which I just have to learn to wait for. So in those moments when I can successfully wait, I feel excited about the things we will learn, the adventures we will have with Charlie in our family and the unique opportunities that raising him will give us. Plus, did I tell you? He’s one cute boy.
Nadine, in her pre-children life, was a primary school teacher. She still does some casual work and is hoping over the next few years to do postgraduate studies in inclusive education. Nadine and her firefighting husband, Matt, live in beautiful Callala Bay, New South Wales, with their four children, five chooks and naughty chocolate Labrador, Moose.
If I constantly worried about the future, about things that may never happen, I might miss today and the child I have now.
Ryan 80 |
Different is just different By Melanie Mora
Our firstborn, Jamie, had been a dream baby; beautiful in every way. I transitioned from professional life to motherhood with barely a backwards glance. When Jamie was 10 months old, we were excited to find I was pregnant with our second child. My pregnancy progressed typically through all the routine scans and health checks. I boldly told a girlfriend how lucky we were to have normal, healthy babies. She replied, “You never know until they are born.” That conversation would return to haunt me six months later. We were a bit surprised when Ryan decided to make his way into the world two weeks early. I had had a difficult birth with Jamie, a protracted labour that failed to progress, resulting in foetal distress and an emergency caesarean. Hence, this time I knew what to expect, and we just had to wait in line for our turn in the operating theatre. Twenty hours after labour had started at home, we were the proud parents of another beautiful boy. Our family was complete. The next day my husband, Richard, arrived with my mother and Jamie to meet his new brother, a bewildering experience for most 18 month olds. At the same time, a team of doctors entered the room. I assumed this was a routine check and thought little of it. A nurse came and escorted Mum and Jamie to the waiting room while the paediatrician looked Ryan over. After a brief inspection came the bombshell Richard and I will never forget. “One of the nursing staff has noticed some unusual features with your baby and we are going to test for Down syndrome,” he said. Within seconds I had turned to stone; I felt the blood drain from my body until I was numb, incapable of feeling anything or showing emotion. The doctor and his horde of interns left the room; our perfect family life shattered, my mother and son still outside. The next 24 hours were a blur to me. I was locked inside my own world. Richard and our respective families were dealing with the shock and grief in their own ways. Richard had already experienced more than his share of family traumas and saw this as the final nail in the coffin: “Why me? What next? Will it ever end?” I remember him asking in despair. All the classic textbook thoughts were going through my head: this isn’t happening to me; it’s a bad dream I’ll wake up from; I can’t do this; this wasn’t meant to be our life, take him away. All the while praying that the doctors and nurses were wrong, the tests would be negative, and we would resume the life we had planned. However, through all this emotion, I never let Ryan leave my room and at some point that night, when I was holding him and feeding him, it dawned on me that he was still the same beautiful boy I had been besotted with a mere 12 hours earlier. And so, while still clinging to the hope that the experts were wrong, I started to feel again, to love him again, and begin the road to accepting that we might be on a different journey to the one we had expected. I will always be grateful that I had that time with Ryan before the diagnosis, to love him before a stranger had labelled him “unusual”
or “different”. When Richard came in the next morning I had psychologically turned a corner and we began to talk and share our feelings. Richard contacted a paediatrician who had been recommended to us, so we could find out what we were dealing with from someone we chose. If we were to move forward in a positive way we had to alienate ourselves from the doctor who had delivered the crushing news in such an unfeeling, public way. I know there is no easy way to deliver such news about Down syndrome, but there is a compassionate way. How parents are told can shape the way they see their child, the decisions made in those early days, the making or breaking of a whole family. We received this compassion from our chosen paediatrician. He was straight up and advised us we needn’t wait for the results to confirm the diagnosis. Ryan definitely had Down syndrome. “This isn’t what you were expecting I know, but it’s not the end of the world. You still have a baby. Ryan will take longer to achieve milestones, but he’ll get there. You will still feel much joy as he learns to walk, talk and ride a bike, just like any other child.” He left us with hope, dignity and the right to love our baby again.
I know there is no easy way to deliver such news about Down syndrome, but there is a compassionate way. Life gradually regained a sense of normality. In Richard’s typical way of facing life and his fears head-on, he organised a visit from a family with an adult son with Down syndrome. He was a real success story, schooled in the early days of mainstreaming. I was not sure about the visit beforehand. I loved Ryan, my baby now, and was not keen on looking ahead at what the future may hold. However, when this young man greeted me at the door with, “Hello gorgeous,” and a big hug, I was putty in his hands from that moment forward. We felt an immediate and easy bond with this family whom we had never met before. If they were any indicator, a wonderful rich journey lay ahead. Richard and I talked about how other people would see our family now. Would they pity us? We knew that how others viewed Ryan would depend on us and how we were with him. We decided early on that Ryan would be given every opportunity to keep up with us as a family. He would be out in the community, accepted and not hidden. We would be envied, not pitied. We would not be victims. This positivity was hard initially. It was cultivated rather than natural, as we dealt daily with a roller coaster of emotions. But we quickly put the dark early days behind us, and the positive way we felt about Ryan and our family became natural. We adored him every bit as much as Jamie. He was a gift enabling us to see life differently. The experience brought Richard and I closer than ever. It had enabled us to see character and strengths in each other that otherwise would have lain dormant. Our extended family benefited also as Ryan effortlessly worked his way into everyone’s hearts. I have not felt compelled to look too far ahead at what Ryan might be doing tomorrow, in five, 10 or 15 years. If I constantly worried about the future, about things that may never happen, I might miss today and the child I have now. That would be a crime because today, and in fact from very early on in Ryan’s life, we realised we would not have missed Ryan, or this journey, for anything. I am so grateful he is with us and that his Down syndrome was not detected in any early scans, because 82 |
I know what decision we would have made and, while not casting judgement on others, it would have been an ill-informed one. No one could have predicted how beautiful, engaging, loving and enchanting he was going to be. No one could have told me how much we would love him; how much his big brother, Jamie, would adore him; how much his grandparents would love him; and what a huge dimension he would add to our lives. Just last week Jamie told me he thought Ryan was “the most beautiful boy in the whole wide world”, and I couldn’t agree more. Early last year we decided to try for our third child. I was not thrilled at the thought of another pregnancy but was looking forward to having another baby in my arms. When I was three or four months pregnant, I started looking for a nanny who would fit with our family and accompany Ryan to kindergarten two mornings a week. Jamie had been attending a Montessori kindergarten since he was two years old and we had been very happy with it. We had decided that with the right support there was no reason why Ryan couldn’t also start at two years of age. The first nanny we interviewed ended up with the job. Although Rachael had no formal training in children with special needs, she had all the qualifications I required: she bonded instantly with my children. Every Tuesday and Thursday morning when she comes to collect the boys, Ryan hops into her arms and waves and says, “Bye Mum!” Everyone at kindergarten has been pleasantly surprised by his constant progress. The kids love him, the teachers love him and Rachael adores him. At two, Ryan has just started standing (very proud of himself) and has all the precursors to walking. He just has to decide to do it! He is attempting to copy words and loves dishing out kisses and cuddles on request. He is well behaved, sleeps well, travels well and is a joy to have around. About the only thing I despair over is his fussiness with food, although, as with all things, I know we will get there. I have written this story during a two-week hospital stay after the safe and healthy delivery (albeit five weeks early) of our third gorgeous boy, Ethan. The protracted stay has allowed me to enjoy our newest addition before returning home to the other boys, space to rest, write and put our early experiences with Ryan aside. As Ethan and I look forward to going home to Richard, Jamie and Ryan, it isn’t lost on me that ultimately we did get our perfect family. It may not be conventional, but if I have learned anything it is that different is not always bad; different is just different. Given the choice I wouldn’t change a thing.
Melanie Mora lives in Auckland, New Zealand, and is married to Richard, a project and development manager. They have three boys, Jamie, Ryan and Ethan. She trained in architecture, diversifying into construction design management. She has taken a break from work to focus on being a mother, her best and most challenging role yet. This article was first published in NEXT Magazine, a New Zealand beauty, fashion and health magazine.
Elijahâ€™s presence and personality have given us a great opportunity to learn more about love, life and this experience of being human.
Elijah 84 |
My beautiful Baba-chop By Virginia Lonsdale
I spend a lot of my day singing to Elijah. It seems that whenever we are together, which is most of the day, there is something to sing about. There’s a song for milk time, nappy change, walking, nap time, splashing in the bath, bouncing, taking socks off feet, playtime, feeding, kisses and cuddles, rolling around naked, saying hello, waving goodbye, and whenever the moment takes me to sing something instead of saying it. It’s not just him or me, it is us. Elijah is my muse. He inspires me in many ways, especially to use my voice creatively. Early on, I noticed his attention and fascination in my musical tones and our interaction continues to evolve. Elijah loves faces, particularly my face. When I sing, he studies my face intently, tilting his head to one side, opening his eyes wide, raising an eyebrow, pursing his lips or opening his mouth. His face moves and his whole being is absorbed in the sounds I make and the movements of my eyes, eyebrows, cheeks and mouth. At those moments, there is just Elijah and me and everything else steps back into the shadows. At 12 months old, Elijah had an ultrasound scan of his heart. As he lay on the bed, I jangled some bells and sparkly toys to keep his attention but it wasn’t working. The cool gel and the pressure of the handset on his chest were upsetting him. Grasping for something to settle him, I started to sing his favourite song, Baba-chop. My lips and tongue worked hard to make those b’s and p’s burst forth, but soon the fussing died down and he was captivated, looking at my mouth and eyes, trusting me completely. I employed the same ruse when Elijah had to have some blood drawn. I dreaded the scene: baby screaming, nurses trying to get the needle in or out of a flailing arm. But that didn’t happen: we wrapped Elijah in a blanket with one arm out and I started to sing him Baba-chop. His whole self was with his special song and me. The nurse stuck the needle in, drew the blood and then put on a plaster. It was all over, without a whimper. The nurse said, “Lucky your mum can sing.” Lucky for us both. Lucky for me, because I am naturally introspective and contemplative and tend to take life too seriously at times, when what I really need is a bit of light-heartedness and fun. Elijah’s love for me, my singing and my expressive face have brought out a dormant, tuneful voice and a playfulness that even I delight in now. We both have fun. I’m not a modern-day Mary Poppins with witty, catchy tunes and a magical way. Not all days are sweetness and light. Some days I don’t sing so much. But it doesn’t take long for Elijah to encourage me by starting to laugh or blowing raspberries.
Elijah makes me laugh. We belly laugh together. He smiles. I smile. He laughs. I laugh. He babbles and I babble. He reaches out to hold my face. I pucker my lips. He opens his mouth and sticks out his tongue to give me a kiss on the cheek. “Thank you Ligey,” I say, and give him lots of kisses back. On the whole, our days are joyful and relaxed. Elijah is my second child and I have found parenting easier this time around. Much of the anxiety that surrounded the “how-to” and “what-if” of my first child has gone. I realise now how quickly he will grow and I try to treasure his babyness: his smell, his chubby face, legs and hands, his little pink lips and his gorgeous naked baby body. There may be many things a parent wants from a child and “relationship” would probably be at, or near, the top of the list. The type of relationship where both feel a sense of wholeness, devotion and love, where there is a quality of interaction that changes both their lives and changes them well. Elijah’s birth into our family has changed us so much for the better. What other reality could I want? What other reality would be better? This “now” is better than anything I ever envisaged: our little fella is healthy, vibrant, smart, loving and, as we found out on a recent holiday, enjoys grilled barramundi, high sea swells and whale watching. After learning that we would have a boy with Trisomy 21, my husband, Rob, and I were very unsure of what to expect. But we decided to embrace this unplanned event and learn what we needed so that we could thrive as a family. We have come to appreciate the fact that unplanned events can give us some of the greatest gifts of life, if we have the eyes to see. And certainly, Elijah’s presence and personality have given us a great opportunity to learn more about love, life and this experience of being human. Quite simply, we love our child immeasurably and unconditionally. We see his wholeness and intrinsic value. This makes us so happy we want to share it with the world.
Virginia Lonsdale and her husband, Rob, live in Brisbane, Queensland, with their two boys, Thomas and Elijah. Elijah was diagnosed with Down syndrome at 28 weeks’ gestation and has had no health complications. Virginia has spent her wanderlust adulthood as a school teacher, yoga teacher, student of Zen Buddhism, an avid gardener and is now an at-home mum. Rob, a modern-day renaissance man, plays guitar, has a masters degree in two languages, was a British Royal Marine Commando and is now on Civvy Street.
After a while, I stopped worrying too much about milestones, realising that Emily will get there in her own time. As Emily grew, I fell in love with her more and more. I realise now that she is perfect. Anna Hunt-Selwood | Dunedin, New Zealand
She is simply Sophie, with trendy glasses and purple hearing aids, with tenderness and stubbornness, with habits and meltdowns.
Sophie 88 |
My lighthouse By Casey West
At 20 weeks pregnant with my second child, I entered the hospital waiting area to see the obstetrician for a routine check. There were many women around me, all at different stages of their pregnancies and lives; some smiling with excitement and hopefulness, some older and some younger. I was 24 and although not that far into my pregnancy, it was uncomfortable to walk – and by walk, I mean waddle. Finally, 45 minutes after my appointment time, the doctor called me in. As she went over my file and made general enquiries about my pregnancy and health, she paused, peered over her glasses and said, “I remember you.” The doctor was recalling a day, two years earlier, when down the corridor in the same hospital, her colleague had sat my husband and I down to tell us that our unborn baby had Down syndrome. That was our first pregnancy and I was 17 weeks along. The doctor recalled being bewildered that at the mere age of 21, I did not heed their recommendations to terminate my pregnancy. Sitting with me two years on, she asked if I’d had prenatal testing done this time. When I said we had decided not to, she promptly left the room, shaking her head after making a comment about “not thinking things through”. Another obstetrician arrived shortly after, continued my check-up and, towards the end, again recommended prenatal testing. Early after the new year, we welcomed a beautiful baby boy, Murray William. Murray’s older sister, Sophie, was not fazed about the fuss over Murray’s arrival. Sophie had not long turned two. She preferred taking off her glasses and flinging them as far away as she could, to cuddling her new baby brother. When pregnant with Sophie, I had sat in that same hospital and listened as the doctors told us that the amniocentesis performed two weeks prior had revealed that the baby had Down syndrome. Following the diagnosis, support and wishes of congratulations came in many forms. My parents and brothers reassured me that I was more than capable of loving and bringing up Sophie. Prayers were sent, lifelong friends knitted delicate outfits and gifts of clothes and toys were received, all in trademark pink. Even the family GP came to visit within hours of Sophie’s birth. All this warmth and welcoming of my new baby girl outweighed the friends we lost and family members sending sympathy cards. The fabulous Miss Sophie Jean was born on a mild day in November. She arrived three weeks early after ultrasounds revealed she had stopped growing and therefore labour needed to be induced. There were many nurses, paediatricians, anaesthetists, obstetricians and students in the room that day, all eager to get their hands on the “Down’s baby”. I had been warned that Sophie was more than likely going to be born with cardiac and respiratory problems and to be prepared for surgery that might be needed. She was put in a humidicrib and was nasogastrically fed for two weeks. She
had jaundice and struggled to grow but eventually she was big enough for us to take her home. Sophie had two small holes in her heart that had closed over by the time her younger brother came along; no surgery needed. The next few years had many ups and downs. Sophie consistently failed her hearing tests and was fitted with bilateral hearing aids at 10 months old. Glasses soon followed as did the everchallenging task of putting her aids and glasses (or as I tenderly call them, her ears and eyes) back on, fetching them from the toilet bowl, under the couch or in the garden and regularly getting them repaired or replaced. Sophie was oblivious to her many doctor and specialist appointments, both in our hometown and in the city two hours away. Optometrists, audiologists, cardiologists, geneticists, chiropractors, physiotherapists, speech therapists, occupational therapists, incontinence nurses, naturopaths and deaf educators all had the gratification of seeing my beautiful Sophie and marvelling at her. Some have been in our lives from the beginning and have watched as Sophie has grown and learnt wonderful things. Some have only met her once and hopefully she will be hard for them to forget. Sophie was only four months old when we were introduced to three other families in our town, all of whom had a first child born with Down syndrome. The four babies were under six months old and with the help and expertise of the local early intervention centre, a playgroup was set up that incorporated occupational therapy, physiotherapy and later, speech therapy. Together, the three mothers and I became each other’s comfort, support, guidance and most importantly, friend. We laughed together, cried, discussed specialists and became a family. One November morning, one of the mothers from our group called to say that her son, Landan, just shy of his third birthday, had passed away in the night at the hospital. From that day onwards, we were reminded of the fragility of life, not just that of our “special” children but of every child. I don’t know if Sophie remembers him but I will always hold Landan and his mother close to my heart.
All this warmth and welcoming of my new baby girl outweighed the friends we lost and family members sending sympathy cards. Sophie moved through to “pre-kinder” sessions at the early intervention centre. She was approved to receive funding for an aide and attended four-year-old kindergarten in a mainstream setting. We also travelled to the city each week for “deaf kinder” on Fridays. Sophie began learning to use cutlery, and to run, hop and jump; she learnt, albeit reluctantly, to wait her turn and to share. Most importantly, Sophie learnt to communicate with her hands. I had begun sign language lessons when Sophie was fitted with hearing aids and managed to coax her kinder teachers and, later on, her classroom teachers, to take lessons as well. We had educators of the deaf visit us at our home fortnightly, and we joined in on family camps with other families of hearing-impaired people. Before I knew it, Sophie was signing simple requests: drink, food, toilet and mum. Her brother joined in as well. Some of our extended family and friends took classes and maintain a keen interest in learning how to communicate with Sophie; others have found it too difficult. Three years ago, Sophie started at our local specialist school. In her class were her two other playmates from the Down syndrome group. In that first year, Sophie learnt to hold a pencil and to “write” on paper; she could cut and paste, manipulate play dough, manage the ladder on the 90 |
playground, use the interactive whiteboard, wait her turn in hydrotherapy and “read” books, among other things. Her spoken and signed language grew. Sophie’s confidence and independence flourished. I even began toilet training her. Sophie is now seven and is toilet-trained during the day. She can write, recognise and respond to her name and, if the menu is right, will confidently eat with a fork. She delights in playing with her dolls; putting them to bed, waking them up, putting them to bed, waking them up, and so on. She enjoys jumping on the trampoline, especially when she’s naked and it’s raining. She is learning to dress independently, brush her teeth, use the toilet and bathe by herself. Although this has been, and will continue to be, a long process, her successes are frequently evident. Her brother, Murray, now five, is wonderful with Sophie – sharing toys, signing to her when it’s dinner time or hugging her if she is upset. They still have their fair share of arguments but, ultimately, they are dear friends. Our family has also evolved. It is just the three of us now and although we have challenges, we have simple daily pleasures and many triumphs together. Two years ago, Sophie was diagnosed as having autism and will occasionally have, as her brother lovingly calls it, a “hissy fit”. Sophie’s quirky ways and habits have been given a label but they do not define her, nor does being deaf or having Down syndrome. She is simply Sophie, with trendy glasses and purple hearing aids, with tenderness and stubbornness, with habits and meltdowns. She looks like me, with a hint of her grandmother. Sophie is special but I don’t mean this in a patronising way. She is special because she can walk into a crowded room and captivate her audience simply with a smile and laugh. She is special because she knows that the best way to eat a donut is to lick the icing off first, and because she will forever love without judgement those who love her and even those who were not too sure if they could. Sophie and I have come a long way and have both learnt so much. There were days of sadness and grief. I was scared that I was not good enough, uncertain about the future and wondered if “they” (the doctors) were right – maybe I was too young and better off without her. I often felt lost and in the dark during those early days. Nevertheless, Sophie chose me to be her mum, no one else. How blessed I am just to be in her presence and to watch her sparkle and shine. The day I met you, Sophie, my life changed in ways I could never have imagined. You opened my eyes and heart to a world I barely knew and showed me the way to an enriching and magnificent life as a mother to you and darling Murray. I will dream for you and defend you, admire you and learn from you. You are my strength and my weakness, my hopes and dreams and, above all, a shining light in my life. For you are my lighthouse, Miss Sophie Jean, shining your light in the dark and showing me the way home.
Casey West lives in Ballarat, Victoria, with her daughter, Sophie, and son, Murray, and Major Tom, the dog. She works full-time at the Ballarat Specialist School.
Andy’s down with it By Narelle Bugg
Almost 15 years ago, I gave birth to my third child. It was a boy. That wasn’t a surprise as we had found out the sex during one of our ultrasounds. But learning our baby boy had Down syndrome, now that was a big surprise. After only three hours of labour, I walked through the hospital doors and doubled up in pain over a couch in the entrance. I was put in a wheelchair, wheeled straight to the delivery suite and, 10 minutes later, Andy was born, three weeks before his due date. I was laughing; I couldn’t believe it had all happened so quickly. Our little boy cried as they wrapped him up. My mum attended the birth and she was in a spin as she had never attended a birth before. My husband, Paul, missed it all as he was away with work. The next three days, everything was fine. Andy wasn’t into breastfeeding, preferring to lick rather than suck, and he was sleepy. But my mother told me that I had also been sleepy and that this was not uncommon for babies born a little early. I trusted her words. A girlfriend came to visit and she made me laugh. “You didn’t sleep with a Chinese chef did you?” she said. “His eyes look really Chinese when he opens them.” Day four came and I was looking forward to soon going home with my baby. I was a little concerned, however, that Andy was still not feeding properly and, around lunchtime, I was again attempting to feed him when the paediatrician came into the room. (My husband, Paul, wasn’t nearby; he had taken our other children, Cleo and Lachie, over an hour’s drive away to Ballarat for his work for the day.) “We think there are a few problems with your baby. He doesn’t seem to be feeding well does he?” she said. And then proceeded to say, “Actually, we think he has Down syndrome.” My heart started racing. A million thoughts were running through my head. “I am only 29. Look at him, he’s perfect. You are so wrong, and I’ll prove it.” Then she said, “Would you like to call your husband? Hold my hand and have a good cry.” Of course, I burst into tears. We have video footage of the family taken two days after Andy was born; just happily hanging out in the hospital, getting to know our baby. It’s bizarre to watch. Everything was perfect. I was healthy and baby was fine. We had completed our little family and were looking forward to leaving the hospital and getting on with our lives. It’s amazing how quickly a few words can change your life. Two hours after we were given Andy’s diagnosis, another paediatrician visited. He pinched Andy’s skin (I later discovered he was checking for dehydration), looked at his feet and seemed to poke at his eyes. “Mmmm, hmmm, almost sure he does have Down syndrome, but we shall test to be completely sure,” he said. Again I was thinking, “No way, look at him. You are so wrong.”
Of course, he was right. The next couple of days were filled with tears and mixed emotions. How was I going to cope? And what had I done to my perfect little family? Why, oh why, didn’t I just stop at two? My only experience of a person with Down syndrome was a girl who worked in the sheltered workshop my uncle had managed a few years back. She was overweight, couldn’t talk and spent her day sleeping at the table. My other thought was that people with Down syndrome die when they are about 15. I don’t even know why I thought that, but I did. So was I going to waste 15 years caring for a sick child, only to have him die? My dreams for my family were shattered. My dad came in to visit soon after the diagnosis. He said, “You know you don’t have to keep him; people will adopt him and he’ll have a good life.” Those words still send a shiver up my spine. Although I was devastated at the time, adoption was definitely not an option. Two days later, a weekend paediatrician came to visit me. His words will always stay with me. He said, smiling, “So, baby has Down syndrome, bit of bad luck there. But you know what? A new world is about to open up to you and you will meet many wonderful people because of this.” His words couldn’t have been more true. On day 10, we took our boy home. We had received the all-clear for any heart problems. In the first few weeks, I spent a lot of time wondering, “Why me?” We had quickly fallen in love with Andy. But reading any available information on Down syndrome at the time was discouraging. I was also waiting for life to become difficult. Wasn’t this supposed to be really hard? Isn’t Andy supposed to be sick? Aren’t I supposed to be run off my feet with appointments? A physiotherapist came to visit me while we were still in hospital. She offered to show me a photo album of all the babies she had worked with. I promptly told her that I had my own son and didn’t need to see photos of more of “them”. I have laughed about that since.
We had quickly fallen in love with Andy. But reading any available information on Down syndrome at the time was discouraging. She was a lovely lady and when she left, I did look at the photos and was amazed at these beautiful kids. They all looked fantastic; far from the images I had in my head. There were normal family photos, like we have of all our own children. I don’t know what I was expecting, but I was pleasantly surprised. In Andy’s first year, he did catch a few chest infections. On one occasion, he ended up in hospital overnight. But he was a delightful baby. As with Cleo and Lachie, I spent lots of time playing with Andy. Much to my surprise, he reached his milestones with ease. He rolled over at three months, sat up at nine months, was crawling at around 11 months and walked at 18 months. Feeding was easy and, sleepwise, he was a dream. And Andy was the cutest baby; his smile lit up his whole face. Every achievement Andy made was special to us and slowly but surely I began to believe he was going to achieve great things. All the negative information I was given when he was born was starting to sound so wrong.
Every day Andy would teach us something new. The joy he brought to our family was amazing. Andy charmed everyone he met, and still does. My family and friends were extremely supportive and still are. Andy is one of the most loved members in our extended family. Fast forward a little and we were ready to start Andy’s education. I enrolled him at the same kinder Cleo and Lachie had been to. The kinder teacher was fantastic and we worked together to settle Andy into the routines. The first day I left him, I thought he would burst into tears when I tried to leave. I went over and quietly said to him, “Mummy’s going home now; you can stay at kinder, and I will come back later.” He just waved me goodbye and went back to playing. That was that.
All the negative information I was given when Andy was born was starting to sound so wrong. Later, we also chose to send Andy to a mainstream school. Again, we enrolled him at the same primary school where Cleo and Lachie were attending and now he attends the same high school they do. An integration aide helps Andy in the classroom for most of his day. The first couple of years were tricky as Andy had little intelligible language and used to run away. Once, after he managed to leave the school grounds for 20 minutes, the school took my concerns seriously and installed safety gates. As a family, we have always involved Andy in all aspects of our lives. He loves being outdoors and can’t get enough of basketball (he is pretty much assistant coach to his dad for several teams). So many people in our local community know and love him. Andy’s siblings are great with him. They too have gained so much from having him in their lives. At times, particularly during their teenage years, I’m sure there was some resentment, but I saw this as typical teenage behaviour. Andy is right now a typical grumpy 14 year old, who hates school and would gladly spend his day sleeping in, playing the PlayStation, watching wrestling on TV or chatting to friends on Facebook. Cleo and Lachie’s friends also accept Andy. There have been the odd ones who haven’t. Fortunately, my kids have been smart enough to know they were not worth having as friends. I love watching Andy play basketball with Lachie’s mates, especially when they don’t pamper him and expect him to behave like any other kid. And Cleo is looking forward to the day when she can take him for a drink at her favourite hotel. People with Down syndrome can have fulfilling lives. I am confident Andy will eventually live independently. Along with everything else, he is now learning many life skills. Andy has taught us so much; patience, understanding, the ability to go with the flow and to not worry about things that don’t matter. Yes, it is a different path in life than the one I had imagined before his birth. But it’s one that has also enabled us to meet so many amazing families in similar circumstances, people I now proudly call my best friends. The biggest hurdle we face in raising a child with Down syndrome is living in a community that is not as inclusive as it could be. But we’re working on that. Narelle Bugg runs her own pickling business, I’m Not Charlie. She has been married to Paul for 25 years and lives in Geelong, Victoria.
Toby laughs at everything, and he basically loves everyone he meets. He somehow seems to intuitivelyâ€¨respond to them as whole human beings.
Toby 96 |
A birthday to remember By Ari Galper
Something special happened to me on my son Toby’s second birthday. We had a party for him with about 15 other children, aged from two to five. It was a great afternoon. Some of the children played together, while others played on their own. There in the middle of it all was Toby, riding his little red-and-yellow car around the room, just like all the other kids; doing his own thing but obviously feeling connected to them. What hit me during the party was just how naturally he fitted in. Although he’s a little boy who is “different”, on his birthday he was just one of the other kids, and they treated him like anyone else, just as I and my wife, Michelle, do. The party made me think about a lot of things. For example, how we all have expectations about how life is going to be, and what happens when things don’t turn out the way we thought they would. When Toby was born and we discovered he had Down syndrome, I suppose it was natural for us to feel overwhelmed at first. But as I was watching him playing at his party, I realised how much I’ve learned since he came into our lives. I’ve started to think of them as my Toby Lessons. Live in the present Although Toby is different, he’s also just like every kid before they start learning to spend most of their time in the past or the future the way we adults do. At his party, he wasn’t wondering when it would be over or what would happen next. He was just in the present moment with the other kids, riding around, eating his cake, and enjoying watching them. One of the most important things I’ve learned is that when I’m with him, I have to let go of my other concerns and just be there. I really value being with him – seeing his delights, his upsets, how he sees things and interacts with them – and I’ve realised how much I miss if I’m not in the present moment too. Slow down and focus Because Toby does things more slowly, I have to listen and pay close attention to him. If I start speeding ahead, the connection between us gets lost. He has taught me to focus and slow down. Remember the “good old days” before we all got used to the idea that we should be multitasking at every moment? Well, Toby can’t multitask. He does one thing at a time, and more slowly than other kids, but he does everything with total focus. That’s been such a valuable lesson for me.
Don’t let things get to you Toby has also taught me not to let things get to me so much. He seldom gets upset, he laughs at everything, and he basically loves everyone he meets. He somehow seems to intuitively respond to them as whole human beings. Stop judging – none of us is perfect, but we’re all unique Toby’s openness and lack of judgement have made me think a lot about what we tend to think of as “normal”, how our expectations and preconceptions sometimes blind us to what’s there in front of us. I know that sometimes other people may see that Toby looks “different” and perceive him as not being “capable”, when in a lot of ways he just does things more slowly. But people who don’t know him may judge him as “less than...” rather than someone with special and unique qualities. This is ironic because aren’t we all vulnerable to being judged as “less than ...” in some area? After all, as human beings we all have our “imperfections”. We want other people to be open to learning who we are, just as I want to be open to learning who Toby is, and I hope that other people will be open to that too. I guess the main point is, maybe it’s time for us to let go of old ways of thinking and viewing the world and other people, those things that may hold us back from truly appreciating who and what we have in our lives. At his birthday party, Toby was just like all the other kids and yet also, just as unique as each one of us. Maybe if we can learn how to be a little more in the moment, with more patience and openness, and to recognise that we’re just like everyone else – and uniquely ourselves – we’ll find it easier to reconnect with the best parts of ourselves as human beings. In that way, maybe Toby is the way we all ideally should be.
Ari Galper lives with his family in Sydney, New South Wales. He is the creator of Unlock the Game, a trust-based sales and marketing approach.
Tobyâ€™s openness and lack of judgement have made me think a lot about how our expectations and preconceptions sometimes blind us to whatâ€™s there in front of us.
The world is a much better place by Willem being in it. Just by existing, he teaches the people he meets about difference and about sameness.
Willem 100 |
The reality gap By Abigail Elliott
“When was the last time you received a reality slap? We’ve all had plenty of them in our lives: those moments when life suddenly deals us a painful blow. It’s a shock, and it hurts, and it knocks us off balance; we struggle to stay on our feet, and sometimes we fall.” Dr Russ Harris, psychologist, from his book, “The Reality Slap - how to find fulfilment when life hurts”. My “reality slap” led me, as a parent, to also becoming a carer, and taking on something more than the average, something more complex and more challenging than a typical family member or friend role. The story of how this happened I usually call my 1 in 1603 story, and it began more than five years ago. I was pregnant with my second child and I went in for the fairly standard 11-week scan, combined with a blood test, which predicts the likelihood of bearing a child with a range of chromosomal issues. My results gave me a likelihood of having a baby with Trisomy 21 (Down syndrome) as 1 in 1603. A very low likelihood and, in fact, a lower chance than I had had with my first son, born three years earlier, which is unusual as the risk of chromosomal issues increases with the age of the mother and father. However, as you may have guessed by now, instead of my son Willem being from the pool of 1602 babies without Down syndrome, he was the 1 in 1603. And every extra 21st chromosome in every cell of his little body has had a profound impact on my partner, David, and me. We found out seven hours after Willem was born that things were not how we had assumed, and the shock and sadness is something I will never forget. Panic set in and my head raced with questions: How will I cope? How will I know how to care for him? Will he learn to talk? What will happen to him when I die? How will it affect his brother, Fynley? Will he have friends? Will he get bullied at school? Willem’s diagnosis forced David and me to leave the safety of how life was before Willem was born. I find it hard to explain to people how it’s different having a child with a disability, because having a child without a disability changes you forever too. However, in Australia, some estimates put the rate of termination after a prenatal diagnosis of Down syndrome at 97 per cent. This statistic basically says it all: people don’t feel they can cope, or decide for lots of reasons they don’t want a child with Down syndrome. In our society, it’s a big deal to have a child with Down syndrome. Imagine if we could change that! Imagine, for instance, if the right support was there, the mainstream education system wanted all kids at their schools and there were jobs and appropriate independent living arrangements for people of all abilities. Russ Harris writes about this “big gap, which is created between the reality that we’ve found ourselves in and the reality that we want. And the bigger that gap is, the bigger the pain. And the bigger the pain, the less effectively we cope.” He says our first instinct, whenever we encounter a reality gap, is “to try
and close it; we take action to change reality, so it conforms to our wishes. And if we succeed, the gap closes and we feel good. We feel happy, content or calm, with a sense of achievement or relief.” I would say for the first three-and-a-half years of Willem’s life, I immersed my pain in trying to take action to deal with my reality. I kept focused on what Willem’s developmental milestones were and worked towards those. I spent the first seven weeks driven to get Willem to breastfeed. I expressed milk every three hours, which took an hour to express. It then took 45 minutes to feed Willem 30 millilitres of milk with a special-needs bottle, followed up with attempts to breastfeed, and then the whole process would start over again. My partner and mother alternated with me on three-hour shifts to feed Willem throughout the day and night. I had appointments back at the hospital several times a week in the breastfeeding clinic. I took fenugreek to boost my milk supply. I recorded every bottle, every wee, every poo and I read everything I could about babies with Down syndrome and breastfeeding. I look back and I don’t even know how I kept this up 24 hours a day for seven weeks. But then, suddenly, Willem got it and started breastfeeding and I moved on to the next goals: learning to sit up; learning to crawl; learning to hold things and then learning to walk. (I’m sure you get the picture.) It’s strange reflecting on this because I remember feeling guilty that I should have been doing more, but when I read this, I now think I was amazing! But the biggest goal I always had for Willem was learning to talk. Out of everything in my life, one of the things I value most is being able to communicate with other people. It means everything to me – it means independence, connection and it prevents me from feeling isolated. So teaching Willem to breastfeed was in part to develop muscles that I knew would help with speech. I noticed that Willem, at six months old, was not hearing properly; he didn’t startle to loud sounds. His hearing was assessed over the next year and he was found to have significant hearing loss, due to blocked Eustachian tubes in both ears. Eventually, Willem got a hearing aid and I enrolled him in early intervention through Aurora, a service for deaf and hearing-impaired children. We started attending fortnightly group therapy sessions and I started going to evening sign-language classes. We also took him to a weekly general early intervention group and a weekly Mother Goose music program. When Willem was 13 months old, David and I attended an eight-week program, called It Takes Two To Talk, to learn how to encourage communication in a child with language delay. Last year, I enrolled Willem into Furlong Park School for the Deaf, in Melbourne, for the three-year-old kinder program, and by the middle of last year I also started some private speech therapy for Willem as his hearing had dramatically improved. However, about five sessions in, the therapist suggested we have a break as Willem was not making any gains and it appeared he had started to feel the weight of expectation to do something he couldn’t do. He stopped enjoying the sessions and wanted to leave soon after we arrived. I asked the speech therapist if Willem would ever learn to talk and she said she didn’t know and that he wasn’t showing signs of it at this stage. I was devastated. The grief was immense and on reflection, I’ve realised I had been hiding a lot of my grief in setting goals for Willem and keeping busy helping him to try to reach them. This was probably a natural and positive way of dealing with my situation, but when this didn’t work to plan, I didn’t cope. I felt exhausted and hopeless and I knew I needed to access some help. About a year earlier, I had done a six-week counselling program for parents of a child with a disability through Carers Victoria, which had been very helpful and I knew I could access one-on-one counselling so I rang up and referred myself. I was only a couple of sessions in when I became extremely ill with a septic shoulder infection. The infectious diseases specialist told me this was about as likely as being struck by lightning. I was unwell for months and, at this time, I became the recipient of a lot of care 102 |
from my partner, parents, friends and local community. I raise this because I feel that the grief and stress I had been dealing with was a contributing factor to how sick I got and some of the research I have since explored demonstrates that stressors can increase susceptibility to infection, influence the severity of infections and slow down healing. When you are in a caring role the sense of responsibility and relentlessness of it is exhausting and stressful. It never stops! You can’t leave it at the office! You don’t get four weeks’ annual leave! And that is why having services and supports available to carers are so important, in order to keep them well so they can keep caring. The counselling I’ve had has been invaluable in talking about my “reality gap” and helping me learn how to get through the really challenging times. The mix of feelings I have around being a parent of a child with Down syndrome will always be complicated and confusing. Would I choose to have a child with Down syndrome? No. Would I choose to have Willem? Yes. I also struggle with the language used around people with disabilities, which is often so negative. They are so often compared to what is considered “normal”, but this then implies people like Willem are “abnormal”. I started using the word “typical” and thus “atypical”, which I am more comfortable with. But the author Kathy Lette, who has a son with Asperger’s, has the best language I have found when referring to children who don’t fit the norm. She refers to them as “extraordinary”. I love this use of language because it is so positive and, flipped on its head, makes life without a child with a disability just ordinary. Of course on a bad day I’d like to put more ordinary in my life, but on a good day I love that Willem has made my life extraordinary. It is enriched by the extremes of emotion he has brought to it. It is enriched by the people I have met because of him. It is enriched by the opportunities it has provided me. The world is a much better place by Willem being in it. Just by existing, he teaches the people he meets about difference and about sameness. He is the best advocate for accepting anyone and for making disability visible because he chats to everyone – old men trying to sleep on the train, bikies at Williamstown beach, homeless people in the local park, young Sudanese boys playing soccer, anyone with a baby. He chats away in his own language and people nearly always respond positively. It is living with these experiences and watching the impact of Willem himself, which I am learning to use to deal with my “reality gap”.
Abigail Elliott lives in Melbourne, Victoria, with her partner, David, and three children, Fynley, Willem and Imogen.
To give her choice later on, I believe now is the time to build on Emilyâ€™s capabilities and develop as many skills as possible.
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The sky’s the limit By Ingrid Rikkert
When I found out I was pregnant, it came as a shock. I had never wished to have children. I had never even considered it. It took me quite a while to get used to the idea. I remember joking at the time that it would be OK because, after all, it would only be temporary, until our child was old enough to move out of home. I moved out of home when I was 17 so, of course, this child would too. Once Emily was born and we discovered she had Down syndrome, for all my having to get used to the idea, ironically, her condition did not greatly faze us. I already worked in the disability sector and knew that 1 in 5 Australians have one or more disabilities, not only from birth, but also acquired later in life. Why should it not be the case with our child? I then joked that because Emily has Down syndrome, we would just have to work that bit harder to get her to move out of home. I have always treated Emily like any other child and believe she will have a good life and be quite independent when she is older. This will include living on her own or with a friend, if she chooses. It also means studying and doing work of her choice and enjoying a social life through friends, sports and other activities, however she chooses. If adjustments need to be made along the way, we’ll deal with those at the time. So, how does this picture of her later life influence her activities at the mere age of seven? Well, it’s quite simple. To give her choice later on, I believe now is the time to build on Emily’s capabilities and develop as many skills as possible. Emily is a cute, sociable and active little girl with many interests and a great sense of humour. She loves life and loves to learn. Of course, it takes her more time to learn different things. This can be challenging and is often hard work, but we know how vital it is to creating opportunities. We expect Emily to do the best she can. She is bilingual in Dutch and English, and attends Dutch school once a week. I found it quite funny when Spanish classes were introduced at school, but now that she is teaching me how to count from 1 to 20 in Spanish, I am not laughing anymore. Emily is fully included in all aspects of our local public school, and can read and write. She has been practising for her upcoming jazz concert at the local dance school, loves to swim and do the monkey bars and talks a lot about getting her driver’s licence when she’s older. I usually do not mention that Emily has Down syndrome when I put her name down for activities, unless asked. Most mainstream services have not had experience with Down syndrome and this, for us, has worked out fantastically. They treat Emily like any of the other girls, have high expectations and are not limited by prejudices.
Many parents are shocked and experience a myriad of other difficult emotions after their child is diagnosed with Down syndrome. This is often a result of the hopes and dreams parents had for the child they thought they would have and their views on disability. I believe that we should look at disability as something that just is what it is. We need to respond to our childrenâ€™s potential, abilities and dreams, continually build on their skills, without underestimating them, and fully include them in the community. In my view, this will contribute to their quality of life and assist in changing societyâ€™s attitudes toward disability. Will Emily move out of home at 17? Probably not. Many children today still live at home in their twenties, or even thirties, and so might Emily. But the important thing is to work towards creating opportunities for Emily now, so that when she makes decisions later on her skills and confidence will support her in whichever endeavour she chooses. When there are many choices, instead of plateaus, the sky is the limit.
Ingrid is working as a consultant for the Community Care, Disability and Non-Profit sector. She lives in New South Wales with her partner, Eric, and daughters Emily and Imke.
We need to respond to our childrenâ€™s potential, abilities and dreams, continually build on their skills, without underestimating them, and fully include them in the community.
I feel like such a nag sometimes but this technique of persistently repeating instructions is working for Finn. I feel very proud when I hear him using beautiful manners, accepting compliments graciously and thinking of others. Rachel Graham-Hilder | Launceston, Tasmania
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A wedding to remember By Ellie Delafield
When Emily and Michael were married on April 21, 2012, it was one of the most wonderful days. The ceremony was held in the beautiful gardens at Linley Estate in Kilsyth, Victoria, and Em looked gorgeous in a pale lavender dress. Her cousin, who is a minister, performed the marriage service and Emily’s older sister, Lucy, and two younger sisters, Alice and Elizabeth, were bridesmaids. Her little niece was a flower girl. Em and Mike, who both have Down syndrome, were surrounded by family and friends, many of whom (including me) had never thought that Em would get married and have the sort of independent life she has now. Em held herself with regal poise all day. She and Mike did their own wedding dance, which I had not seen before. I was full of trepidation when they got out on the dance floor, but the display they put on took my breath away. It was wonderful, full of dips and twirls; they must have practised privately for ages. The entire mood of the wedding was very moving – there was a lot of emotion from everyone there. Em and Mike first met at Heatherwood Secondary School, in Melbourne, but did not start going out together until they were both at Alkira Centre, a training and support service, in Box Hill, Melbourne. Mike is a good support for Em. He is patient and understanding with her and has been her best friend for almost 10 years now. It’s been lovely for both of them to have forged such a close bond, and I think their relationship is one of the factors that has helped them attain such a level of independence. They went out together for just short of two years when Mike proposed to Em at his 21st birthday. They were both living at home at the time, but moved out and attended the Genesis program in Blackburn, Melbourne, in 2007. Genesis is a live-in independent living skills program that runs for 20 weeks and teaches basic skills such as cooking, shopping, travel and so on. When they had finished the program, they went to a “half-way house” and from there, moved into their unit in East Ringwood where they live now. When Em left home I felt bereft. She was lonely and very much outside her comfort zone, but she did not complain. She began the course before Michael. He missed her too much so he started it as well, and as soon as he was in the house with Em, she was fine. They have a great life – they are independent of their parents and are very busy with their various activities. They both work part-time and attend Alkira part-time. They travel to Bali (with parents!) and have plans for a Queensland trip, hopefully this year. They have a life like that of many other young couples.
While others seem to think that Em and Mike getting married was extraordinary and momentous, and it is, perhaps, when considered in light of the obstacles many young people with disabilities face in our society. But for us, it was simply the next step in their relationship and for both families quite normal and expected. When Emily was born, I, like most other parents of children with disabilities, had no idea what to expect. I knew what Down syndrome was, but did not know how it would affect my family and me. Emily has surprised and inspired us all. She is stoic and uncomplaining. She works hard and strives to do her best. She loves to take a leadership role and has on many occasions shown people around Alkira. Em has taught us all about the challenges that life throws at you â€“ anything that we have all had to face, she has had to face too, but with fewer skills and resources than the rest of us. She and Michael are best friends. They laugh and joke with each other a lot of the time and help each other out. Mike has limited reading and writing ability while Emâ€™s skills are good; though Mike can negotiate travel arrangements much better than Em. They are companions in the truest sense of the word.
Ellie Delafield is a partner in a Melbourne law firm and mother of four daughters. She lives in Melbourne, Victoria, with her husband, Richard Weil.
Em has taught us all about the challenges that life throws at you Ââ€“ anything that we have all had to face, she has had to face too, but with fewer skills and resources than the rest of us.
Chooks, laughter and disability By Craig and Janet Coulson
When Claudia came into our family, it was not in the usual way, but as a permanent care child. She was 22 months old and suddenly had five older sisters to play with. For our family, the process that led to Claudia being placed with us was long and frustrating. It took more than two years, starting before she was even born. Philosophically, we believe every child has the right to live in a loving, caring family. More practically, we had a spare bedroom, the skills, desire and time to provide a home for a child that otherwise might not experience the love and family life we had to offer. We had applied through the Victorian Department of Human Services; Adoption and Permanent Care for consideration as carers for a child with physical problems. We had already done the training sessions, been approved and now had to wait for a child. We waited, waited and waited. You learn things about bureaucracy when you get buried in it; never give up, as patience is a necessity. Finally, more than two years later, we were told that there was a suitable child for us. But even the process after that was a sad tale of misunderstandings and poor communication, which did, with patience and persistence, eventually turn out. So Claudia came to live with us, complete with a nasogastric feeding tube and a big smile. Our education increased as we dealt with new feeding requirements, nappies again, and older sisters who couldnâ€™t and wouldnâ€™t leave her alone! Although Down syndrome was new to us, we were not daunted and immediately joined the Down Syndrome Association, which was a huge source of support. We also began the most enjoyable process of bonding with our not-so-young baby. Like all stories, there were twists and turns that came unexpectedly, but on the whole, Claudia fitted into our family life and became one of us. The first major problem, apart from being fed through a tube, which had a tendency to pop out when you least needed it to, came as she started walking, just before her fourth birthday. She developed juvenile arthritis, which was identified after three trips to the hospital and a final admission. During this time she developed an unusual gait and complained non-verbally of pain in her arm and leg joints. This problem became controlled with medication, which then caused other problems; gastric ulcers and skin degradation on her feet. Her medication was changed, which now seems to be working, but she requires three monthly eye checks for symptoms of iritis, a potential problem with the new medication.
During the September holidays, before her sixth birthday, we removed the feeding tube, and only offered her food orally. After a few days she got the hang of eating and has not looked back. She loves her food now. It was our hope that Claudia would attend the local primary school, but it was made clear to us that there wasn’t a place for her there. Sometimes you have to fight for what you want and sometimes you have to step back. After considering the possibilities, we decided we didn’t want to send her to a school that didn’t want her there; it is their loss. Claudia now attends a Special Developmental School, and loves it. Claudia is still small and, at this stage, has little effective language, but she signs and can say a lot of single words that we can understand. Continence is still a problem, but we are hopeful, as with the language, that she will improve when she is ready. The decision to bring Claudia into our lives, and to eventually adopt her, was a family decision, as we would all be required, at various times, to look after her. Her older siblings have no trouble introducing her as their sister and even take pride in being with her when they have friends around. Claudia has brought a lot of joy into our household and in return has been the recipient of our love and respect. Here are some important things we have learnt from Claudia: 1. Dirt is a great play toy and so are the chooks. 2. Laughter is infectious. 3. The first time you ask Claudia something, the answer is “no”, but she doesn’t always mean it. 4. Everyone is fair game for a wave and a smile. 5. Disability is only a word for some people without it.
Craig and Janet Coulson live in Melbourne, Victoria. They have two boys and six girls; their last two girls, with multiple special needs, are adopted. They are active in disability support, international aid, sustainable living and ecological awareness.
There were twists and turns that came unexpectedly, but on the whole, Claudia fitted into our family life and became one of us.
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Inspiring achievements By Jill Harrison
Tears of joy rolled down my face as I watched our son Mark proudly hold the torch aloft as he ran a leg of the Sydney Olympics torch relay in 2000, flanked by members of our dragon boat club and cheered on by family and friends along the roadside. It was one of the most memorable moments of my life and a long way from what I could have imagined when Mark was born. For the first few days after Mark’s birth, I was in oblivious happiness with my new son, until the fourth day when my doctor with a few quiet words – “Your son has Down syndrome” – sent my world crumbling down around me. I cried for hours. Our doctor asked my husband, Rod, and me if we wanted to take Mark home with us. He was our son; of course he was coming home. Then there was the silence after the doctor left, leaving us to our grief and no other thought except for those few words that would define our lives. When we arrived home with Mark, our two-year-old son, Paul, was overjoyed with his new brother. He had no idea of the trauma and sadness that surrounded his parents. As Mark started to grow, every new step he took brought with it a mixture of joy and sadness. Joy in each small new achievement, but sadness that it wasn’t going to be an easy road for Mark or for us. I knew I expected more of Paul, demanding that he, at age two, be mature beyond his years. It wasn’t fair, and I knew I was doing it, but inside I was struggling. During Mark’s two years at our local preschool, I was determined that he would not go to the special school and that he would be integrated into our local primary school. Then one day I was sitting outside Paul’s classroom waiting for him after school. I looked into the room and suddenly had a vision of Mark sitting in there alone among a sea of children, with no idea what was going on around him. I knew this was not the place for him, so Mark was enrolled in the new Education Support Centre at South Bunbury Primary School. At South Bunbury, the staff were amazing and supportive and would become my lifeline and friends over the next seven years. At the end of his first year, Mark performed with his class at the annual school concert and was awarded his class Citizenship Award. His teacher said he brought out the best in everyone. I cried, but this time with happiness. It’s hard to fathom that this emotional turning point for me was more than two decades ago and that Mark is now an adult, with so many achievements behind him. Mark completed Year 12 at the Education Support Centre at Australind Senior High School, was a member of the Eaton Scout group and played football with the Eaton Junior Football Club. In 1996, he was presented with a Children of Courage Award at Government House in Perth for his achievements despite his special needs and then there was his run through Brunswick, Western Australia, carrying the Olympic torch, two of the proudest days of my life.
Mark works with his peer group at the Activ Timber Products workshop for two days a week and enjoys open employment at Aristos Waterfront Restaurant, in Bunbury, for two days, giving him the best of both worlds. His employer and the other workers at Aristos have been wonderful to Mark. Working there has boosted his self-esteem and confidence. He catches public transport to work and returns home by taxi. Our whole family are members of the Forza Dragon Boat Club in Bunbury and Mark has competed as an equal paddler since 1997 at a state and national level. He is well accepted and liked by everyone in the team and within our state association. Mark also works out at the gym three times a week and is proud of his muscles. On Fridays, a support worker from Enable spends time with Mark exploring life skills. Mark also competes in a tenpin bowling league for people with special needs. Mark loves football and is an avid West Coast Eagles supporter. He is a keen movie watcher, enjoys dancing with the music turned up loud, doing “word sleuths”, takes photos with his digital camera, and his latest craze is his Wii machine. Mark has travelled extensively with us throughout Australia, and has also travelled to several overseas destinations where we are always amazed at how people are drawn to him.
Mark is well accepted and much loved. He is outgoing, friendly and has a wonderful sense of humour. Paul and Mark have always had the usual brother relationship and Paul has always been fiercely protective of Mark. It hasn’t always been easy for Paul, growing up with a brother with special needs, but I know that Paul is the wonderful, caring person he is, who stands up for other people, partly because of his relationship with Mark. In 2004, Mark was a proud groomsman at Paul’s wedding, at which he gave the toast to the bridesmaids, and learnt to waltz so he could dance with the women at the wedding. I always knew that Paul would need to find a very special partner in life and Jennifer immediately accepted Mark and treats him like her own brother. Paul made special mention of Mark in his wedding speech, saying, “You give me strength and every achievement you make inspires me. I’m very proud to call you my brother.” Paul’s best man also gave a wonderful tribute saying, “Paul’s character has never been more evident than in the way he has given so much of himself to help Mark become the amazing young man he is today.” Mark now has two nephews, Jamie and Owen, whom he adores and who equally love their Uncle Mark. Mark is well accepted and much loved. He is outgoing, friendly and has a wonderful sense of humour. He brings out the best in people and teaches those around him about acceptance, consideration and that people with Down syndrome are just like anyone, with the same feelings and aspirations. The hurt that I feel about Mark still surfaces occasionally when something happens that reminds me again that Mark has Down syndrome. But at the same time, I couldn’t imagine life without Mark. I also know that Mark has made me a better person. I have empathy for others, confidence and inner strength, and the ability to stand up and speak out for what I know is right. 118 |
I donâ€™t know where the future lies, but I know that the deep bond of unconditional love we share with Mark will help us overcome the challenges that lie ahead. Mark has brought many special gifts to our lives. Yes, my life is very different to the one I had envisioned, but I know how much poorer it would have been without Mark. How can I tell you what love is? Love is bearing a precious child. How can I tell you what happiness is? Happiness is seeing this child grow every day. How can I tell you what joy is? Joy is watching every new step he takes. How can I tell you what sunshine is? Sunshine is something this child spreads around him every day of his life. Sorrow ends Pain slowly fades But love and joy are ours forever Reflected in the smile of our child.
As well as being a wife, mother and grandmother, Jill Harrison is a freelance journalist and photographer. She is a life member of the Forza Dragon Boat Club in Bunbury as well as co-founding and coaching a team for breast cancer survivors. She lives in Western Australia.
We were the proud parents of a most beautiful little girl, whom we named Promise, and who had quickly muscled her way into our familyâ€™s heart.
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Our Promise By Emma Dunne
My fourth daughter was induced two weeks early with chronic liver failure. We had only moved to New Zealand from the United Kingdom 10 weeks earlier and I was feeling jaded and alone. My husband was also struggling to look after our other three children in a city he barely knew. One day while gazing out of the hospital window, I started having a dialogue of sorts with God about his sick sense of humour. Why had He directed us to come all the way to New Zealand to now give us a child that may not survive because she could need a liver transplant? After a good hour of rambling and pitiful complaining, I felt a strong surge of peace and assurance that all would be fine with our daughter, Evangeline. In fact, I felt God had strongly impressed upon me that my life so far was just a training ground and that we would somehow care for children with profound problems. In my hormonal post-partum state, I enthusiastically shared this information with the hospital social worker. Of course, I was met with: â€œPoor woman, take your own wee one home. You have enough on your plate without worrying about others!â€? Rather deflated but quietly enthused, we brought Evangeline home and nursed her through what can only be described as a miraculous recovery. But I never forgot that day, that epiphany in the hospital room. So my husband and I embarked on an adoption course. (This was not a new plan for us. We had endured infertility issues in the early years of our marriage and had talked at great length about overseas adoption. It kind of felt like sewing a past sorrow into a new chapter of life.) I think the social worker was somewhat astounded at our reason for adoption but approved us after some gruelling courses and inquisitions. Interestingly, we had ticked all except one of the boxes in our adoption profile. Yes, we would take a drug damaged or physically disabled baby, for instance. The only box we had left blank was the one that said Down syndrome. Not even having a real reason but not sure either, neither of us had ever had a personal encounter with someone with Down syndrome. Three years later, almost to the day, on a Friday afternoon, the phone rang and my heart flipped. It was our social worker calling. For weeks I had waited to hear this call with a mixture of fear and excitement. They had a six-week-old baby in desperate need of a mum and dad. She had been born eight weeks early with heart and liver problems, leukaemia, chronic lung disease, a ruptured intestine, oh, and yes, Down syndrome. Before he had finished his list of ailments, the word Promise flashed through my mind. This was her, this was the one promised to us three years earlier. She was not expected to live more than six months, due to all her medical complications, but was fading away in an incubator. There was no question in my mind that this little gem had been born for us to love. (She and I even shared the same birthday.) The next few days were like a dream. My husband was back in the UK at the time, so I emailed him about his new prospective daughter and prepared myself for the long journey to Auckland to meet this little girl. (At this stage, we were living in rural Taumarunui, a four-hour drive away.)
Her adoption was completed within six weeks because the judge was concerned she would die before it was done. I remember walking from the courthouse in stunned silence, my husband and I absorbing the enormity of what we had just done. We were the proud parents of a most beautiful little girl, whom we named Promise and who had quickly muscled her way into our family’s heart. One of our first and foremost concerns had always been how having this little girl, who might die early, would affect our five other children. (By that stage, we also were permanently fostering a seven-year-old Maori boy.) Our children coped and continue to cope wonderfully and were very pragmatic about Promise’s possibly limited life. Our eight-year-old at the time summarised the attitude of them all beautifully: “Well, it’s better to love her heaps while she is here on earth, than not love her because she might leave us.”
It was as if Promise fed off the love of her siblings... She was their little sister and that was all there was to it. Life unfolded month by month. Heart surgery and regular dashes to the hospital plagued the first winter. Then came summer and our little princess grew from strength to strength. It was as if she fed off the love of her siblings, who by this time had forgotten all the morbid medical predictions. She was their little sis and that was all there was to it. She continues to grow in leaps and bounds. Most of her medical labels have fallen away, outgrown like an old skin. She chuckles her way through life. She attends preschool, walks and is learning to sign and talk. She has the profound ability to look directly into your soul with her deep brown eyes that say more than one 10 times her age could express. She attracts favour and laughter wherever she goes. She gives hugs and wet sloppy kisses just when they are needed and loves with a selfless, forgiving nature. She is the diamond in the crown of our family. Her name is Promise. A promise and a gift from God.
Emma Dunne is married to Steve and they live in Nelson, New Zealand. Since adopting Promise, the family has taken even more children into their home on a permanent or short-term basis. They currently have eight children; two adopted children, one permanent foster child, and five children by birth (Emma gave birth to a boy when Promise was two years old).
If I could have my time over, or if I were to give advice to new parents, it is to follow your heart and your gut feelings, because thatâ€™s where the truth lies. Our children may be different, but their contributions are no less real or positive. I couldnâ€™t live without Josh. Anja Turner | Kilsyth, Victoria
I love that Fraser has his own curator and has had several exhibitions and sold his art to the general public; that his work is noticed and considered valuable.
ANDREA TO GE ADJUST IMA
Fraser 124 |
A confronting conversation By Fiona Place
I love Fraser. I love that with him, my son, there is the ordinary and extraordinary. Fraser loves life and gives us a precious gift; an invitation to love life with him – to surf, watch movies and to draw – to enjoy life totally in the present. We do surf and watch movies as a family, however, none of us can quite draw like Fraser. I love that, at 16, he is the first person with Down syndrome to be selected three times as a finalist in the Adelaide Perry Drawing competition. I love that he has his own curators, has had several exhibitions and sold his art to the general public; that his work is noticed and considered valuable. He has taken us into a world we would never have visited without him. These days my feelings for Fraser are solid and strong, cast by years of nurturing him as a mother and enjoying and appreciating the facets of Fraser’s personality that make him unique. I have long left behind any deep examination of difficult emotions around Fraser’s condition. However, I remember clearly the last time this happened. It was under, I felt at the time, the harshest of microscopes. And feelings I thought were too small to see, too small to pinpoint, broke out and forced their way to the surface. Questioning my decision I was lying on the bed with my husband, Anthony, one evening, a few short years ago, talking about a 50th birthday party we had attended when, without any awareness, I started heading into emotionally dangerous territory; I found myself recounting one of the many conversations I’d had that night. The woman I was sitting next to, I told him, on finding out that I had a child with Down syndrome and after listening to me talk about how emotionally difficult I would have found it to have terminated had I definitively known during the pregnancy, surmised that I must be either pro-life or a fundamentalist Christian. She did it in a low-key manner, I added, but I was shocked. One minute, I thought I was having a fairly ordinary mother-to-mother bonding conversation and the next, I felt like I was being catapulted into an ideological war zone. I have never thought of myself as falling into either category, I told him. But once she said that, I couldn’t give a coherent reason as to why I had had Fraser; I was unable to justify his birth. I didn’t know what to say. “Surely, it is a public health issue,” she said. “Surely, there is a moral obligation on behalf of the mother to bring a healthy baby into society?” And no, she didn’t think amniocentesis should be paid for by the public health dollar, simply for mothers to know whether or not their child had a disability. No, that would be a waste of taxpayers’ money. It should only be available to those who agreed to terminate.
When I gently tried to point out that some women who think they will terminate sometimes change their minds, while others find knowing in advance emotionally prepares them for the birth of a child with a disability, she remained unmoved. Once again, she stated that such tests should only be publicly funded if the woman agreed in advance to terminate. She also wondered how a feminist (if that was what I was) could have willingly burdened herself with a disabled child. Surely, I must realise, I am sending out the wrong message to young women. Anthony looked at me in disbelief: “She didn’t actually say those things, did she?” “Well, not in such direct terms. It was all under the guise of a friendly intellectual feminist debate,” I told him. “But yes, she did articulate that position.” “You didn’t take her seriously, did you?” He asked, his voice rising. Hurt by what I perceived as a criticism of me, I told him I did understand where she was coming from, that as a woman I couldn’t help but understand. But what upset me I told him, wanting him to be on my side, was that she could feel so free to judge me. “You don’t know what it’s like,” I crumpled. “You don’t know what it’s like to know there are mothers out there who think I brought my difficulties on myself; that I chose to have a child with a disability.”
Without admitting to such unpleasant thoughts back then, I don’t think I would feel so good about Fraser today. I have no doubt now that I simply cannot imagine life without my son. “I know I do a reasonably good job, an OK job, but it never looks like that. It only ever looks to them like I’m a failure. A woman who is constantly struggling, a woman who only ever says no. No, I can’t go to the park, to the movies or to the beach. I’m always on the outer, always different. And I hate being different,” I whispered, tears beginning to roll down my cheeks. “I just want to be normal.” Anthony moved closer. “Sometimes I do wonder if I made the right decision,” I wept. “Sometimes I do resent how much it has affected our lives.” I paused, thinking I had gone too far. I was shocked by what I had just said. Did I really feel our lives were that bad? Did I really question my decision not to have had the amniocentesis? We had known there was a high likelihood that our unborn baby could have Down syndrome, based on our combined blood test and scan. But we had chosen not to take the next step to amniocentesis. I couldn’t believe what I was saying. Anthony placed his arms around me. “I didn’t know it was that bad,” he said gently. But I could tell by his voice he was shocked. He remained still, his distress palpable. “Are you sure it is that bad?” he asked. “No, probably not. I’ve probably just over-reacted, but I am sure of one thing: I do know my situation confronts other women; that I always remind them of what can go wrong. Of what they’re glad they’ve escaped. And they don’t like me reminding them.” I paused, wiped my cheek and tried to calm myself. “I don’t like always having to play that role,” I told him. “And it’s made doubly difficult by the (genetic screening) test. It’s not like having a child with autism or cerebral palsy, something that’s seen as a tragedy. No, my having a child with Down syndrome is seen as a choice. And because I chose it, I don’t deserve any help, any support.” 126 |
“You do a great job,” Anthony replied. “A great job.” I wanted to respond, to tell him that I was so glad he could listen, that he could hear my doubts, but before I could get a word out there was a familiar noise; the sound of hands opening our bedroom door. It was Fraser, holding up a handful of movies and requesting to go to the DVD store. I smiled. His presence quickly pulled me up. Achieving ordinariness Talking to that woman that night did distress me. Deeply. But it also made me realise that there are probably larger reasons, larger forces at play that make it so hard for me to feel ordinary. Unlike the birth of a child with an illness, or the incidence of childhood illnesses and accidents, my “tragedy” – the birth of a child with Down syndrome – is singled out as preventable; a condition that medical researchers are working furiously to eliminate. I live in a world where there is rarely any public debate, rarely any public excitement surrounding issues such as how best to include children with Down syndrome, how best to promote innovative medical, social and educational research and how best to move forward. I can see how much the presence of genetic testing complicates things. How much of a double-edged sword it has become. I also realise that many other women may come to experience a similar pain and a similar sense of loneliness as more and more disabilities come to be perceived as preventable; as the drive towards detecting the “less than best” gains momentum. It is easy to imagine how the list could grow. How conditions such as autism, ADHD, childhood leukaemia, schizophrenia, breast cancer and heart disease could be added. One by one. I and many other mothers like me struggle to feel accepted in part because the presence of genetic screening is not conducive to creating an inclusive society. But looking back, I am glad I had that party conversation, glad I was pushed into such a dark place. Because without being pushed and shoved, I’m unsure I would have made as much progress as I have towards empowerment; to feeling that I can join in on my own terms. To feeling that I can be upfront with other mothers about Fraser, upfront about what I can and can’t do, which in turn has helped me to feel so much more ordinary. I am also far more aware of the context in which I am trying to parent a child with Down syndrome, the context in which I am trying to feel ordinary. Without admitting to such unpleasant thoughts back then, I don’t think I would feel so good about Fraser today. I have no doubt now that I simply cannot imagine life without my son. He is delightful and, more to the point, I can no longer fathom any good reason why he shouldn’t be here, an important individual and an important part of our family. Whatever happens, however many advances are made in genetic screening, I know that I made the right decision; the right decision for me. In fact, I could still imagine myself refusing genetic testing if the only purpose is to terminate. While this may be seen as a rejection of modernity, progress, equality and even feminism, I would hope it could also be seen as a refusal to lose a sense of what it is to have developed your own personal ethical system – a value system that isn’t simply defined by religious dogma, feminist ideology or the latest in public health policy. And that, I believe, is an equally important message to send young women. Fiona Place lives in New South Wales and combines motherhood with her work as a writer and an advocate for children with intellectual disabilities. Her novel, Cardboard: A woman left for dead, was republished in 2010. Parts of the above story have appeared in Down Syndrome Australia’s Voice magazine.
I had no idea of the pain and joy that would reside in my heart, side by side, for the first year of Matildaâ€™s life.
Matilda 128 |
Musings on luck By Jenni Johnston
I had never really thought much about whether I was lucky in life until I gave birth to my daughter. Suddenly, the word “luck” began appearing in conversations all around me. The first time it happened, I ignored it. On one particularly difficult day, when I was still coming to terms with my daughter’s diagnosis, my dear friend, who had given birth only two weeks before me, called around to visit. I shed a few tears over a cup of tea with her and as I was just beginning to feel better, she slipped the word out. With spontaneous joy, she picked up her baby and cooed to him, “Ooh, we are so lucky.” She succeeded in stopping my tears, immediately. The word ricocheted around my mushy head, searching for a processing receptor but didn’t find one. Was she implying I was unlucky? I let the thought drift away into the cocoon surrounding me; the cocoon I had newly woven to protect me, the wounded mother, and my daughter, the “imperfect” baby. The funny thing about this word “luck” is that you can’t predict who will use it. Even the people you consider to be nice can use it in ways that leave you floundering. The next time it reared its head was with the local café owner I had befriended during my pregnancy. This café had been the hub of my social life then; great food, great coffee and great staff. While in hospital after the birth of my daughter, I received a card from the staff sending their kind thoughts during our difficult time, and that they were looking forward to a cuddle when we were home again. Keen to get my life back to normal after being in hospital for several weeks, I visited the café with my daughter and we were given a grand welcome. My daughter was fussed over and I began to feel that perhaps life could be “normal” again when bam; someone said about themselves, “My family has been lucky, nothing like this has ever happened to us.” Here was that word again, and this time it ricocheted around my head even louder. Did I hear correctly? Did someone imply again that I was unlucky? I retreated back into the cocoon with my baby. In there, I felt very lucky but couldn’t understand why others didn’t see that. It didn’t stop there. Even other parents of babies with Down syndrome were using the word around me. “We were lucky, our baby didn’t need surgery.” “I was lucky, I had lots of help from friends.” “I was lucky, my child with Down syndrome was not my firstborn.” What was this obsession with luck? This word was chasing me but it wasn’t until much later that the penny dropped: I realised people really did think I was unlucky! The irony was that, in those early days when Down syndrome was imprinted on my daughter’s forehead and I was breaking the news to everyone, I never felt unlucky. While it was a shock to discover my child has a disability, I somehow felt this was how it was meant to be. Once I got over the realisation that my daughter was not going to grow up to be a humanitarian lawyer with the looks of a supermodel, I accepted her. In a strange way, I liked the fact she was “different”. I mean, normal can be boring, can’t it?
I guess I haven’t exactly had a “normal” life myself, but it also hasn’t been extraordinarily different. I struggled with relationships and it was not until I was 35 that I finally met the man who would become my life partner and my daughter’s father. Being over 35 when I conceived, I had a higher chance of Down syndrome occurring, but we decided against prenatal testing due to my history of miscarriage. We had a brief discussion about the possibility of a problem with our child: “Yeah, I’ll cope. Will you?” “Yep sure,” was about the extent of our discussion. Naturally, we didn’t think it would happen to us. So when she arrived and when at first glance I noticed she had unusual eyes, I had an inkling there was something different about her. When her diagnosis was confirmed five days later, I was ready for it. I was ready to do whatever it took to give her the best life possible, despite having no idea about what it would entail. I had no idea of the pain and joy that would reside in my heart, side by side, for the first year of her life. I had no idea that I would encounter so much kindness from our family and friends, who all rushed to embrace our daughter and welcome her into the world. I could see confusion in their faces as they too struggled with those same feelings of pain and joy, side by side in their hearts, but weren’t we lucky to be experiencing such a rich depth of human emotion?
I was ready to do whatever it took to give Matilda the best life possible, despite having no idea about what it would entail. So it has been an interesting journey. Therapy became a part of our life; speech therapy, physiotherapy, occupational therapy, massage therapy, vitamin therapy, crystal therapy and aura therapy. You name it, we tried it. We were lucky to find some great therapists who have contributed to our daughter’s wellbeing along the way. We decided to pack up our home when our daughter was 10 months old for a sea change, and we have been lucky to find a beautiful part of Australia to call home and good people to become our new network of friends. When I still had a raw heart in the early days, I was lucky to find some nonjudgmental mothers, who became my Mother’s Group. The people I worked with at my new job were all so kind, welcoming and genuinely interested in my daughter. Once again, I was lucky. When we called on the local Steiner school that we wanted our daughter to attend, they were welcoming and attentive. The school community has made the terrifying journey of putting our child out into the wider community a supportive and nurturing experience. Every day when I take my daughter to school and see her happy face as she wanders into her classroom, I realise how lucky we are. So in the first few weeks of her life, when we were being told about all the possible problems my daughter may develop and the implication that we were unlucky was everywhere, I wish a magical wise person could have snuck into my hospital room with a crystal ball and said, “Here, take a look at your life in six years’ time.” It would have looked something like this: It is a beautiful winter’s day, Matilda and I are alone on the beach near our home. We build a sandcastle, we play elephants and run in and out of the breaking waves. We run to the rocks and 130 |
I show her the animals living in the shells. Disinterested, she throws them back in the sea and calls out “el-phant” and off we go again. We make the sandcastle even bigger and we recite lines from our favourite book, “At our beach, our magic beach...” I suggest it is time to go home and light the fire. “Fish Mummy,” she says. I know this means she wants to watch her favourite movie. We brush off the sand, collect our bucket and spades and say goodbye to our beach. As we walk home I am transported once again to the safe and nurturing cocoon that was woven around us when I was a wounded mother, but this time I am no longer wounded and I also know for sure that I am the lucky one.
Jenni Johnston lives a fortunate life on the far south coast of New South Wales with her husband, Geoff, daughter Matilda Rose and son Jonathan Edward.
Every day when I take Matilda to school and see her happy face as she wanders into her classroom, I realise how lucky we are.
A mother’s roar By Carolyn McDiarmid
I can almost hear it, the collective sigh of relief from the mothers as we all drop off our children at school and kindergarten on the first day back for the new term. Could I have imagined, six years earlier, that life would be this normal? Probably not. I take my mind back to that day nearly six years ago when I think my life was defined. I think about that poor, scared, shattered woman, 28 weeks pregnant, curled up on the floor, roaring with grief, amazed that my body was capable of such a guttural sound. Being watched by my three-year-old son, aware of his reaction to my grief, worried even in that moment how he would be scarred by my behavior, let alone by the fact that he and his younger brother would soon have another brother, a brother who was not planned, a brother with an extra 21st chromosome. The details of how I came upon this diagnosis are unimportant. What is important then? It is hard to know what matters in our lives until something changes. Do we need to go through a life-changing experience to truly know what is important or to become the person that we are meant to be? I don’t believe so. But in my case, maybe that was required. Over the next 10 weeks of my pregnancy, I went through a very dark period. But once again, I look back now and don’t believe that was important either. Or maybe it is. If I could write myself a letter now to read on the day I received the results of my amniocentesis, what would I say? It may go a little like this: My darling girl (you need to show love for yourself so that you can demonstrate it to others, and that will set a good example for all those boys in your life). You are a wonderful mother. Your grief and your broken heart are a testimony to that. You show your love for your boys by being worried and sad. It is pretty hard not to be worried and sad when you are being overwhelmed with so much information that is far from positive. And you know what? None, or very little of that information, is going to seem important when you meet that beautiful little baby, who is already looking like his big brothers on the ultrasound photos. You have your “safe” little family; mother, father, and two children right now. It is OK to be worried about the impact that disability will have on your family and the effect it will have on your marriage and your little boys. But you know what? Don’t dwell on the negatives. Clem, your unborn son, will teach you all so much. He will teach you about unconditional love. He will teach you about diversity and acceptance, without even leaving the house. He will teach you that no matter what, boys will be boys. He will teach you to stand up for each other. He will teach you that perseverance is a wonderful thing and a good trait to instill in your children. He will teach you that doors will
open and take you places you never dreamed possible. And most of all, he will teach you that you are really just a “normal” family. I won’t deny that some days will be hard. But the good will far outweigh the bad. Does anyone go in to parenthood thinking that there won’t be hard days? (Actually, I probably did but that is another book in itself!) Being a parent is undervalued, underpaid and often misunderstood. However, it is this job that will give you the most in return. It will give the most love, the most laughter, the most tears, the most frustration, the most rewards (if you take housework, washing and nappies out of the equation), the most “on the job training” and the most time spent playing and tickling. I challenge you, Carolyn, to tell me that this is not true of all your children. Clem is much more like your boys than different. He is much more a “McDiarmid” than a “Down”. He loves Shaun the Sheep, Matchbox cars, Lego and the iPad. He runs, he jumps, he talks (often yells), he laughs, he cries (he even has tantrums), he likes the beach, he likes digging in the dirt and sand, he loves spending time with his grandparents, he loves playing with his cousins and dancing with his friends, he loves kindergarten. He really is just like his brothers.
He will teach you that doors will open and take you places you never dreamed possible. And most of all, he will teach you that you are really just a ‘normal’ family. You are going to learn to be strong. Clem will bring out a protective instinct that a mother lion would envy. You will roar with might rather than with grief. Your family and friends, who just love and accept Clem as “Clem, the brother of Clancy, Fergus and Sidney and who just happens to have Down syndrome”, will overwhelm you. You will be amazed at the wonderful people you will meet on this wild roller coaster of a journey you are on. You will make lifelong friends with a vibrant, rich tapestry of people, even though you thought your “friendship cup” was full. They will be the people who understand, the people you can share anything with, the people who are also members of this exclusive club. To gain membership is tough and there will be days when you think it would probably be easier if you were not a member. But membership is rewarding, it is amazing and though few of us would consciously choose to be a member, we wouldn’t quit for anything. Your marriage? Well, any marriage that survives the normal pressures of life is doing pretty well in this day and age. Statistics apparently show that parents who have a child with a disability have a higher incidence of divorce. There will be days when it will be hard, just like any marriage. After getting over that initial hump in the dark days before Clem is born, your marriage will be stronger and more resilient than you thought possible. And you know what? You will defy those statistics. There will still be a twinkle in both your eyes when Gordon, your husband, walks in after a day at work, even after 10 years, four kids and a child with a “disability”. Well, darling girl (actually, the reason I call you that is that you will be fortunate enough to have all boys, so you won’t be able to write “darling girl” to a daughter), that is all you need for now. You will be OK, despite the way you feel right now. On those days where it is a little harder, surround yourself with people who love you. Have a little wallow if you need to but don’t stay there. Pick yourself up and love that family of yours. You are going to do great things. Lots of love, Your darling girl xxx 134 |
P.S. One more thing while I’m writing this letter: make a rule in your house that children cannot walk around holding laptops. This will avoid shattered screens. And don’t drive with the music up so loud that you cannot hear the reverse sensors on your car.
Carolyn McDiarmid lives with her husband, Gordon, and their four sons in Geelong, Victoria. When she is not busy wrangling children, she works with families who have children with a disability.
You will make lifelong friends with a vibrant, rich tapestry of people, even though you thought your ‘friendship cup’ was full.
Emily 136 |
Perfect or different? By Karola Franklyn
Do I have a perfect child? No. I have three of them. Do I have a different child? Yes. All three of them are different. Three lovely little girls one day. Three noisy, grumpy, demanding monsters the next. They are all special in their own way and all unique, adorable, wonderful, challenging – and perfect, each and every one of them. A long time before I met my husband, I had decided to use modern medicine only where it helps to heal. Having an autistic cousin and an uncle who suffered from bipolar disorder had helped me to accept people who are different. They’d always been part of my life. So, when I became pregnant with my first child at 35, I decided against scans, especially the 12-week ultrasound. My husband and midwife were supportive of this. Louisa, our first daughter, was born perfectly healthy. Does that mean she is perfect? Well, initially, she had trouble breastfeeding. Then, she would not start eating solids and caused us months of worry and struggle because she started losing weight. She suffered from reflux and often kept us up for hours at night with a windy tummy. As it turned out, she is lactose intolerant. She did not start sleeping through the night until she was about 14 months old. Toilet training was a very lengthy process, not because she couldn’t but because she didn’t want to. Her tantrums were legendary. “I want”, is her favourite expression and she is one of the most stubborn and impatient people I know. Do we love her? Of course we do. Is she perfect? Of course she is. She’s creative, charming, beautiful, sociable, clever, good at school, the best storyteller and reader – and she’s our daughter, part of us. Then came pregnancy number two. I was 37. We did what we did with number one. No scans but a great midwife. Emily only took two-and-a-half hours to pop into the world. We took her straight home, because everything was fine. A few days later I discovered that some of her toes were webbed. We got referred to the paediatrician who diagnosed her as having Down syndrome. Does that mean she is not perfect? Well, she did have a big hole in her heart and needed open-heart surgery when she was eight months old. She used to be troubled by colds and had her tonsils and adenoids out when she was three years old. But she was keen on breastfeeding and started eating her solids like a pro. No reflux and toilet training was a much easier process, mainly because she has always been keen to please and to try her best. “I love you” is her favourite expression and she makes people around her smile. She is one of the most determined people I know. Do we love her? Of course we do. Is she perfect? Of course she is. She’s creative, charming, beautiful, sociable, clever, caring, helpful, the best DJ – and she’s our daughter, part of us. When I was 39, I got pregnant again. The doctors recommended the 12-week scan because I’d already had one child with Down syndrome. That meant statistically, I had a higher chance than in my last pregnancy to have a child with Trisomy 21. As it turned out, Anika did not have an extra
chromosome. Does that mean she is perfect? Well, she was a pro at breastfeeding but she did not start sleeping through the night until she was about 15 months old. She generally doesn’t sleep enough and can therefore be moody. But she is also sensitive and responsible. At first she was great at eating solids but now she can be difficult when it comes to eating healthy food. She’s suffered from colds and ear infections, pretty much from day one and was probably the grumpiest baby ever. She catches every virus and often runs a fever without an obvious reason but she is also athletic and talks like a book – at the age of three. She is stubborn but also determined and patient. She is a girl of opposites. Do we love her? Of course we do. Is she perfect? Of course she is. She’s creative, charming, beautiful, sociable, sporty, clever, sensitive, the best puzzler – and she’s our daughter, part of us. So, what is the big difference between Emily and her sisters? Emily is not going to be as tall as her sisters. But some of her gestures are just like her sisters’. Emily’s hair is a darker shade of blonde than her two sisters’, but equally fine and shiny. Her eyes have a slightly different shape but the same blue colour with long lashes. Emily’s face is a little bit rounder and her nose and ears are smaller but her smile is just as beautiful as that of my other two daughters.
Emily’s face is a little bit rounder and her nose and ears are smaller but her smile is just as beautiful as that of my other two daughters. Emily is more easy-going than Louisa and Anika but she is just as stubborn when she thinks it’s important. Just like her sisters she doesn’t like it when Mum tries to help because they all want to do it their own way. She loves spending time with her friends, enjoys dancing, playing, reading books, baking with Mum, watching TV, getting dirty in the garden, dressing up, putting on necklaces, just like her sisters. She has a wicked sense of humour and loves to tease, just like her sisters. She frustrates me and ends up on the naughty seat sometimes, just like her sisters. She also makes me laugh, smile and burst with pride, just like her sisters. Emily didn’t crawl, she hopped on her bottom, till she thought it was time to stand up and walk. She took her first steps on the day her little sister was born; she was 20 months old. She eats all by herself using a spoon and fork; she drinks from normal cups and she does not spill a drop when she demolishes her ice-cream. Her speech is not very clear yet but thanks to her signing we know that she can read as well as any other five year old and her writing is coming along beautifully. She has been a little bit later in reaching some of the milestones, but she got there and she will always achieve what she sets her mind on. People ask us, “What about the future?” The answer is that Emily will always be a little bit different but she will make her way, just like anybody else. She might not achieve as highly as her two sisters. But I don’t have a guarantee that they’ll become supermodels, tennis stars or Nobel Prize winners, either, do I? The only thing that matters to me is that they are happy, each in their own way. Today, we went to the local gardening centre and I looked at my three girls as they emerged from the car. One was in a complete pink fairy outfit, over multi-coloured pants. Gardening gloves and 138 |
pink sunglasses completed her outfit. The second one had decided not to keep her shoes and socks on. But sheâ€™d insisted on putting a little princess skirt on over her dirty pants and there were fairy wings on her back. The third one had taken the socks off her feet and wore them on her hands. She also sported a sunhat, which was way too big and kept slipping onto her face. Of course, she also wore her favourite green fairy dress. Now, you spot the â€œdifferentâ€? child!
Karola Franklyn was born and grew up in Germany and came to New Zealand in 2003. She is a secondary school teacher and her husband, Graeme, works for a small project management consultancy in Dunedin.
These two small, sweet, innocent children shake hands and I can see a world where Nicholas will find acceptance and friendship.
Nicholas 140 |
More laughter than tears By Genevieve Hassall
“What does it mean?” I ask. “He will never read or write,” she says in a cold, officious manner. She should have said, “I have no idea.” That would have been more truthful. She handed me a faded, green, hardbacked book and walked off. Her job was done. My tears filled the room. I was drowning in a grief I did not understand. My husband’s tears mixed with mine. I felt I had let everyone down, that I had let down my beautiful three-year-old son, who looked at his new brother with wonder and love. I was going madly around in circles, thought after thought, words after words; desperation, fear, anxiety and darkness. My world had become irrational. I searched in the nothingness for something, something that would make everything better, that would help me to understand and that I could hold on to. I picked up the book that the doctor had handed me. I turned its faded pages. There was no connection between my baby and the clinical black and white images of the people in this book. Unable to sleep, I went upstairs to the Special Care Nursery. There I found my lifeboat: Nicholas, my new baby boy. He lay still in the humidity crib. His face was swollen and he had a tube up his nose. A nurse had dressed him in a baby girl’s frock. I was infuriated. I read it as a sign of disrespect. My sense of protection towards this child was intensified. I reached in and held his tiny hand, so warm and fragile. Was this really the cause of my grief and confusion? I longed to hold him, kiss him, to feel his body next to mine. I sat there gazing at his sleeping face, the white noise of machines and lights echoing my dazed state. A few metres away, a couple were weeping as a doctor yelled demands to her staff, and then a long drawn out beeping sound, the machine flatlining. The couple were broken. “Please God, bring their child back. Please make Nicholas a normal child.” I wanted the power to make everything better. I wanted a fairy-tale ending, a happily ever after. It’s now six years down the track of my life with this little boy. At the peaks of exasperation, I still have dark thoughts and feel angry at my son’s disability. At these times, I long for a life where he could just be like most other kids with their petty challenges. Visits to caves, beaches and the theatre are never simple. Starting school has not been simple. But there is so much more to appreciate. I could never give him up. He has a beauty and a way of being that draws you in. He never ceases to surprise me and teach me. Two weeks into school and his teacher’s report reads: “Deliberately locking toilet door behind him, needing staff intervention at great difficulty (and to his amusement). Wanders off during learning time. Selects places to hide, such as next-door reading room, reading corner and even corridor when following another class line. Refuses to attempt some work or hold pencil. Says he wants to play.
Lies down on floor during learning time. When asked to sit up, he refuses, and must be sat up by staff members, only to lie down again moments later and laughs.” Like Nicholas, I couldn’t help but laugh. Another few weeks pass. He is now in a new class. It is the learning skills unit with eight other children with learning difficulties. Strategies for helping Nicholas have been put in place. His behaviour has been transformed and now he loves going to school. Nicholas is standing by his teacher’s aide. “Mum!” His face is beaming as he proudly points his finger at me. He picks up his bag and declares, “Home!” “He’s doing really well now. The other children love having him,” says the teacher. These words make me swallow back tears of happiness and relief.
You will do a lot of growing up. You will be humbled constantly. Your boy will teach you patience and acceptance. “Bye Nicholas,” a girl from his class goes to hug him. “No hugging. Shake hands,” says the teacher. These two small, sweet, innocent children shake hands and I can see a world where Nicholas will find acceptance and friendship. So what should have been the answer when I asked the registrar in the hospital, “What does it mean?” “You will do a lot of growing up. You will be humbled constantly. Your boy will teach you patience and acceptance. He will surprise you. He will give you moments of deep happiness, pride and moments of anger and frustration. There will be more laughter than tears. It will be pretty much like all children, only the feelings will be bigger.”
Genevieve Hassall has been living in Canberra for 10 years, working for the Australian Government. She lives with her husband, Richard, their three children, Samuel, Nicholas and Sophie, a mad dog, Mr Frodo, and three non-demanding fish.
When Lily meets a milestone, the feeling is indescribable. As a parent, you feel such pride when your children achieve things. With Lily, that feeling is tenfold, as we know the amount of heart and determination she has had to put in to get there. Jody Nichols | Nelson, New Zealand
Rose 144 |
Ngerrk: the white cockatoo With Clare Wright
This is an edited transcript of a recorded conversation between Janice Mirrina Yunupingu, 41, her mother, Muti, 67, and historian and author Dr Clare Wright. Janice’s daughter, Rose, who was born with Down syndrome in 1990, also joined in. The discussion took place in Gove, north east Arnhem Land, near the remote mining town of Nhulunbuy. Muti and Janice’s husband, Djalung, are members of the Gumatj clan of the Yolngu people. The Yolngu people are the traditional landowners of the Gove Peninsula. At the time, Muti lived in the ex-mission township of Yirrkala, 20 kilometres from Nhulunbuy, while Janice lived at Birritjimi (Wallaby Beach), 12 kilometres from Nhulunbuy. Janice: My name is Janice Yunupingu. I was born at Alice Springs in 1969. I grow up at Yirrkala, in Gove. I grow up with family. I got good mother, adopted mother, who grew me up. I got a husband, five kids: three boys and two girls. Both my mums still alive: my real mother in Alice Springs still alive and my adopted mum, she still alive at Yirrkala; that’s Muti. It was through love that I found my husband, Djalung. And we’re still living together. My first child is a boy and his name is Jeremiah Marrami Yunupingu and he’s 24 now. My second is a daughter, her name is Ruth Binmila Number Two Yunupingu and she’s 21 and she’s healthy. And Rose, she’s single, 20, and she’s got a problem. Her Yolngu name is Lommajinga, sometimes we call her Dhanking, that’s easier one. Named after Muti’s youngest sister’s name. And my fourth, son, he’s called Darryl Gowapu Yunupingu and he’s 13. Still only a young boy. Strong. Good hunter. Also he loves going to school. Then there is Sid. Sid Bangarruy Yunupingu. He’s 12, and he’s exactly the same. Love to go hunting, love to go to school. And sport. They are my special boys. Rose got a problem, but she’s healthy. Got a problem with the heart and she got Down syndrome. Still got a problem with coughing and still got check ups with the doctor. She got bad lungs. Still taking tablets and medicine for the cough. She got problem with the foot; both feet, and they gave her an operation and then put plaster on it, when she was a baby. One toe grows up higher and they’re still checking up on it. I found out Rose got Down syndrome after she was born. I had some problem when I was pregnant; bit sick, bit dizzy. The nurses kept their eye on me. They did ultrasound and told me Rose got a problem with the heart beats. A little bit echo. They told me she would need a big operation. I told my mum and we were both praying for her, for the baby.
She was born in the Nhulunbuy Hospital. After Rose was born, the doctor said to me, “Your daughter, she has a problem, a heart hole.” When she was born, I never seen a baby with Down syndrome before. Nothing. When we were at the hospital, they transferred her to Darwin Hospital and we were there long time, months and months. Before we go to Darwin, I told the doctor, “Can you do a favour for me? I want to go see my family first, spend two weeks and I come and let you know.” And I spend two weeks with my family in Yirrkala and tell my mother all the problems. I tell her they just want to fix the heart hole and check up - just the heart hole - and mother was thinking it hard. She’s going to give me the answer. My mother, not me, she’s the boss. My mum was a bit worried. I was a bit worried. Whole family was worried. When they started the operationi, Rose’s father, Djalung, was in the jail at that time. But I told him, you got to be strong, you got to pray for your daughter. After they gave her the operation, they gave her a bottle, in the ICU. She still had a tube in her tummy for feeding. I didn’t want to stay with her because I saw all these tubes coming out of her everywhere. She was just small. I was frightened, scared.
It couldn’t walk properly. That was the sign. It was like a special gift to the father, through the white cockatoo. When she was four or five months old, my mum said, “I’ll have that baby, be looking after her.” I was there, always stopping there, sleeping there. So I gave the child, Rose, to my mum. They asked me to give another operation for the lungs, for the coughing, but I said no. Because they told me if we give her another big operation for the lungs, she might leave you. So me and mum said no for the second operation. Rose won’t have a husband or children. We’ve been looking after her for a long time, since she was a baby, and now she’s grown up, slowly, slowly - only she’s got problem with the lungs now we can’t give her to the man. If he hurts her, he hurts me too. That’s why I don’t want to give my daughter away to anybody. She’s happy. The doctors never explained to me it wasn’t something I did in my pregnancy that made Rose how she is. But I didn’t think it was my fault. We never seen anyone like Rose before, and that made her special. We look after her the best way we can. The doctors told me, “When you had your second one, alright. When you had your third one, problem.” So they told me, “How you had the third one? Did you do a mistake?” I wasn’t drinking at that time. I wasn’t touch anything. But the father was drinking a lot.*
(* Editor’s note: There is no medical evidence to suggest that drinking alcohol contributes to a child being born with Down syndrome.)
(One day, Rose’s father) was drinking in the Yirrkala cemetery. By himself. And he told us this white cockatoo landed, and was walking near him, slowly, walking slowly. It couldn’t walk properly. That was the sign. It was like a special gift to the father, through the white cockatoo. It couldn’t walk, couldn’t fly. So he caught that white cockatoo and brought it back to us. I was expecting. Expecting Rose.
Muti: She (Rose) was just born from nowhere. Born like a cockatoo - a ngerrk, white cockatoo. Not like a cockatoo. Sign of the cockatoo. Sign of the Rose. That’s what we realised. The doctors showed me the x-rays. Showed me the little holes in the heart. And told me if she don’t have operation, she might die. And then I just prayed. And God answered my prayers. Told me, and I just let her go. Let the doctors take her and do the rest. Take her with her mum. And I just prayed for both of them. And everything was beautiful. They did so well. Rose couldn’t talk to me or somebody else. She’s just sitting there doing nothing until she grow up.* Then she was just playing, doing things with other children and then her time comes for another checking up. So I took her to Darwin. And my heart was just overwhelmed with the good things. I never worried about anything, what would happen to her. (* Editor’s note: Rose had no access to early intervention or appropriate schooling.)
I remember a story about the Bible who tells me about a father who took the child to the mountain to be sacrificed and I could just remember when we went to Darwin, what would I say to Rose? She just gave herself to me and to the doctor. And off we go, to do the things the Creator wants us to. This is the real thing that my heart remembers. I remember when they say to give another operation, bigger operation, it’s another thing for my life. They didn’t do anything for her when they did the operations all over the place. We didn’t get anything. The thing that worries me is that I didn’t see her getting things that would make her more comfortable, things other people got. Because she’s a person, not an animal. They didn’t do anything to support me, that’s why I say no the second time. The Yolngu way is different. Because we are the Yolngu, we got feelings. No one knows. Because Yolngu is Yolngu. Balanda is Balanda. Different way of thinking. If we hear from someone, like Balanda, we trust or honour with her or him. But the doctors weren’t really honest with us. Maybe they think we too dumb to speak (to us), that we have no brain to think properly. They never explained to us about Rose, what she is, they give us nothing. Because this is the main one (reaching over and touching Rose), the main person and special. Like Babaji ii, Galarrawuy, used to sing in a traditional way, it’s important for Rose, important for all of us, for Yolngu people. Sometimes a Balanda realise or recognise, sometimes not. But when Galarrawuy used to sing at ceremony - bunggal, dhapi iii or funeral - he used to sing and his eyes were open to her (Rose), and she’s doing the right thing, what he hears and sings, and she knew the meaning of the song and he realised that she was an expert, in the dancing and singing. Rose has always been accepted by Yolngu, never treated any different. We love her. We just accept her, from when she was a little girl to growing up. I don’t feel like to give away my special person. She came formed like a crocodile. A real crocodile. And that was her. And one of her father’s uncle shoot her with a gun, and injured her in the back, and she was diving under. The wounded crocodile looked over to the uncle and said “Bapa!” iv And that is her story, special story. Muti passed away in early 2013. Rose was transferred to the Royal Children’s Hospital in Melbourne for her heart operation. Babaji = male elder, leader. Galarrawuy Yunupingu is leader of the Gumatj clan. iii Bunngal = ceremony. Dhapi is the Yolngu initiation ceremony. iv B apa = father. The crocodile, or baru, is the ancestral totem of the Gumatj people. To kill a crocodile is like killing a member of the family. i
As well as the joy of having a daughter, for the first time in my life, I feel I have found a way to understand the concept of living in the moment.
ANDREA TO GE ADJUST IMA
Scarlett 148 |
I have a daughter By Monica Kelly
I sometimes cry after I talk to people about my daughter Scarlett. Not because she has Down syndrome, but because people are usually looking at me with anything from disbelief, to pity, to even horror as I talk about our daily experiences. These include appointments with medical professionals – paediatricians, ophthalmologists, audiologists, endocrinologists, neurologists – and our concern for the consequences of the medical outcomes on Scarlett’s health and development. Then there are the associated frustrations of the medical “mill”; endless waiting, uncertainty, disorganisation and isolation. Our daily life now involves visits to the children’s hospital, early intervention, thoughtless comments from others and more. When it comes to Scarlett though, I know that despite the difficulty of some of these experiences, life with her is wonderful. I fear that people don’t understand how this is possible as during Scarlett’s short life, we have been told repeatedly about what is “wrong” with her. I remember reading a story once about a woman who had lost her legs in an accident. She said that her life was better since the accident. I understand this. I feel the same about life with Scarlett. I have a daughter, a beautiful bundle of joy. Scarlett is warm and snuggly, loves unconditionally and her smile lights up the room. When she does new things, she amazes me with her brilliance. I hear others at times talk about how having children is such hard work; sleepless nights, no thanks, seemingly unending streams of wee, poo and vomit, and all this goes on for years. I see the media play up stories in the context of this “hard work”, about why anyone would choose to have children. For me, there was never anything to weigh up. I have always wanted children. I never took it for granted that I would have them and now that I do, I cannot believe the joy that comes with all the “hard work”. It’s that feeling you get inside just at the thought of your child, let alone when they smile, hug you, tell you they love you, pick a flower just for you and do a painting or a card with such intensity and passion – all for you. It was Mother’s Day recently and I was reading in the newspaper articles on motherhood. There was a description of the word joy, though I’ve come to the conclusion that words for me, in this case, don’t capture the intense real-life feelings and emotions, the whole-body experience of joy. I feel all of that for Scarlett, as I do for my other daughter, Grace. I have been on a journey over the past 16 months; an unexpected journey and, truthfully, at times as an unwilling participant. After Scarlett’s diagnosis of Down syndrome, I felt so many difficult emotions and went through many ordeals as we dealt with the consequences for Scarlett. One instance of incorrect medical intervention meant that Scarlett was overprescribed thyroid medication for the first three months of her life. That was particularly difficult given we had barely even understood at that stage what having Down syndrome meant for Scarlett or for our family.
After a few months of what felt like barely surviving, I was scared. I felt like I had changed fundamentally and I didn’t know who I was any more. In such a short period of time, I had learnt things about the world that I didn’t know before – or at the time didn’t want to know – and I responded differently to many everyday situations. My responses shocked me at times and I had no idea, or head space, to even think about how I might best respond to properly represent Scarlett and my feelings of love for her. I felt that the greatest challenges we were facing weren’t about Scarlett, per se, but about Down syndrome, in general, about the future and about the place of disability in our society. Sometimes, though, I did find it hard to distinguish between Scarlett and those issues and felt unable to talk about it. But I have come to realise that there was, and is, a separation. Scarlett is far more than a genetic condition. I know I have a perfect daughter, even though others might not see that. The journey has involved learning about, and feeling, the pain of the children and families before ours who have had to endure far worse; the placement of children into institutions, away from family and without basic nurturing or education. I’m still travelling on the journey and still feel pain at times, but what I’ve found along the way has been truly amazing to me and brought even greater happiness into my life. As well as the joy of having a daughter, for the first time in my life, I feel I have found a way to understand the concept of living in the moment. Others may see us when we’re in a hospital ward, waiting for neurological tests. They may see a child with a disability, the mother looking tired, having had little sleep and knowing the night ahead, sleeping with eight others in the hospital room, won’t bring much more. But it is in this moment that I see, feel, hear and smell the joy that my beautiful daughter has taught me about. I have stopped, I can see the sun shine and feel the glorious warmth on my face through the window. I look down at my sleeping daughter nestled against me and feel pure joy that we are here together on this earth, that we have the opportunity to feel each other breathing, and feel the love and warmth of each other. I don’t know how she did it; perhaps it began for me as a way to cope. But rather than think and worry about all the “ifs” and “buts”, the looking ahead and planning for what is essentially the unknown, the concern about what other people think and worrying about all the things I have no control over, I have tried to focus on what I have to do today – it may be as ordinary as getting home, feeding Scarlett and changing her nappy. And sometimes when the days have been tougher, I’ve focused on what I have to do in each hour. But it is then that I have mostly had the space to appreciate what I have here and now. And somewhere in all this, I have found myself again.
Monica Kelly is married to Murray and has worked in health promotion and public health for 20 years, focusing on reducing health inequalities, particularly in Aboriginal communities in the Northern Territory and Victoria. She has recently started some work looking at the health inequalities experienced by people with disabilities. Murray has recently moved from working in a law firm to working in the area of disability sports, so the contribution Scarlett is making to her family’s journey continues. The family lives in Ascot Vale, Victoria.
Author addendum: As time passes, that early lesson of staying in the moment has only proved more meaningful. I feel stronger now. I am thankful every day for the joy that Scarlett brings to my life. And I am now more able to allow others to see that having a child with Down syndrome may not be something to cry about, but rather a blessing in disguise. 150 |
I have always wanted children. I never took it for granted that I would have them and now that I do, I cannot believe the joy that comes with all the â€˜hard workâ€™.
No twin-set and pearls for our girl By Libby Mitchell
“You had better get some towels,” I yelled from the front seat of the car. “And don’t grab the ones on the middle shelf.” They were the ones we had received as wedding presents and it seemed a shame to christen them if my waters happened to break in the Ford Falcon that my husband had brought home to test for the weekend. I should have realised then, as we left, with a car full of towels and with me positioned on all fours with my rear end facing out the front window, that we were commencing our journey into a world not dreamed of or planned. Our precious daughter, Phoebe, came into the world on the front seat of the car on the way to the hospital. By the time we had reached the labour ward, I was feeling quite clever and relieved that all had gone well, even though I thought my obstetrician was likely to be dismayed that, as a midwife, I hadn’t quite got the timing right. I had noticed that, in the dim interior light of the car, her little face looked a bit red and squashed but, given her unusual delivery environment, that wasn’t all that surprising. Once I was propped up in the labour ward, I remember calling out to my obstetrician, who happened to be in the hospital at the time, “Is she in good nick?” They were all fussing over her in the corner on the paediatric resuscitation table. I was wondering what they could be doing as she was fine in the car. I remember the midwives were fussing over me too, but I was feeling quite happy and content at having a girl and let them chat away. After all, we had delivered her ourselves, in the car, without medical intervention, which was exactly what I wanted. The obstetrician answered that “yes” she was in good nick, and that she had good muscle tone. I thought that was a strange thing to say of a newborn, given her delivery and his knowledge of my profession. After they handed her to me, I knew immediately and exclaimed, “She’s got Down syndrome!” I then realised the obstetrician must have been working his way through a mental checklist as he, too, thought she had Down syndrome and her muscle tone assessment was just what he was mentally up to when I interrupted. She looked so gorgeous and tiny, but she also certainly looked as though no blood test would be necessary to confirm the diagnosis. I remember my husband going particularly quiet as I launched into the plans for the rest of our life. Immediately my thoughts turned to how she would fare in her life. I knew she had to be treated exactly the same as her brother and that we must have high expectations in order to provide her with an optimum life. I recall thinking that she would never
wear a twin-set and pearls! I also blurted out: “Can we still walk Cradle Mountain and travel around Australia?” In hindsight, it was entirely inappropriate to say such things, but the reality was that our world had just altered in such a major way, it was hard to come to grips with what our new world would be like. I then recalled a woman with Down syndrome, whom I had met as a young child at Sunday school. This woman, Margaret, always wore old, ill-fitting clothes; I thought they were most likely her mother’s hand-me-downs. All I remember her doing was winking at everyone. I have no recollection of her ever talking. I made a quick mental note of this (all the while still in the labour ward), and decided that Phoebe would talk properly and be much more socially acceptable than Margaret. She also wouldn’t wink. I had taught antenatal classes at the local Community Health Centre during this pregnancy and one of the topics I covered was, “Unexpected Outcomes”. I handed around cards with different scenarios written down and we would discuss these topics in the group. “What if the delivery differed from your planned ideal delivery,” and “What if your child was born with a disability; how would you cope?” I felt it was important to address some of these outcomes to prepare the expectant parents better. I’m not sure if I helped them explore their feelings, but I’m sure, in hindsight, it helped me deal with our unexpected outcome.
I had been guilty of stereotyping people with Down syndrome in the past and I was now keen to dispel the myths and misconceptions. I do remember thinking, in those first few hours, that it would be easier if we just started all over again. I wished somehow we could turn back the clock and deny this experience. But I also knew that having a child with Down syndrome was now the reality of my life and, as difficult as that was to accept, I knew this was not a choice; something I could take or leave. I also knew that we needed to embrace this diversity from the start. There was a ghastly loneliness in the hospital, but not in a physical sense – every family member and friend made certain of that. I recall a brief moment when I thought that no one I knew was “doing” this, so why were we? I still couldn’t believe that it had “happened” to us. Such unreasonable yet powerful thoughts at the time. I also recalled the fact that as a schoolgirl 20 years earlier, my friends and I were looking at some people with Down syndrome, who lived and worked at an institution near our school. We decided that we didn’t ever want to have a child with Mongolism, as it was known back then. Was that why I was in this situation? (I knew my thoughts were ridiculous but my emotions were such that common sense had evaded me.) I knew that, today, people with disabilities have a much greater life expectancy and quality of life, largely due to information and expertise. I knew I would make sure that Phoebe was accepted and as successful as she could be, whatever that was, and that it would be a wonderful journey for our family. I felt so bad that I had ever had negative thoughts towards anyone with a disability.
Once I had mentally mapped out that her life was going to be fine and that we as a family would still be happy, I then felt incredibly possessive of her and I was keen that she never leave my side. She remained with me day and night, much to the dismay of the staff at times. I recall thinking that some of the midwifery staff, whom I had worked with, seemed to have more trouble coping than I did. I was apparently looking too happy and they couldn’t understand why I was not outwardly devastated. My application of normal clothes and lipstick seemed to equate to the fact that I had not accepted Phoebe’s diagnosis. One touchy-feely midwife told me that what I needed was a good cry. I remember feeling pretty indignant as I knew it was important to deal with this situation in my own way. Not a lot was made of her unusual delivery as I suppose other things became more important, but deep down I always thought that since Phoebe had started her life in such a special way, being delivered by her parents, she would always be special no matter what. As with my other child, Edward, I wanted Phoebe to be her own person and have an identity that only belonged to her. I had been guilty of stereotyping people with Down syndrome in the past and I was now keen to dispel the myths and misconceptions. The more people I came across who said to me that they (children with Down syndrome) were all happy, musical and loving, the more I wanted to strive to prove “them” or “the world” wrong. Never forgetting that vision of Margaret, who wore her old-fashioned mother’s clothes, meant that I would sew for hours late into the night, making sure that Phoebe had at least a couple of new outfits each week, if not every day. She hardly wore a repeated outfit. In hindsight, I suppose that was a bit silly but the thought that it might look like I had “made do” was enough to justify less sleep. Her appearance provided a good stimulus for conversation and I believe that undoubtedly enhanced her growth and development. Phoebe was involved in many local activities; mainstream primary and secondary school activities, little athletics, local netball and swimming club, to name a few. During athletics, it was amazing to watch all the other young athletes waiting on the finishing line for what seemed like an extra 10 minutes as Phoebe finished her 1500-metre run. They weren’t laughing at her slow and laboured style; they were screaming loudly and clapping with encouragement. It was truly amazing the delight that the parents and children took in seeing her determination, strength and her never-say-die attitude.
They weren’t laughing at Phoebe’s slow and laboured style; they were screaming loudly and clapping with encouragement. Phoebe has just loved to participate and don a uniform that metaphorically meant inclusion. Inclusion; something all children thrive upon. In the earlier years, it soon became clear that she would be included due to her own participation and personality, rather than ability. As a parent, this was a really special feeling. Phoebe has been swimming for a number of years now. It has helped her strength and fitness no end and there is a lovely team feeling at her club – it’s beneficial too that swimming is a sport in
which a swimmer’s skill level does not influence another swimmer’s success or not. To date, Phoebe has achieved 13 Down syndrome world swimming records, an opportunity to travel the world competing and has made wonderful lifelong friends. Our family has been lucky to have a daughter with Down syndrome. Phoebe has made a difference to so many family members and friends because of her beautiful nature and attitude to life. She has developed amazing skills in a physical and emotional sense and we are so proud of her accomplishments. Our family is not “special” or “chosen” for having a child with a disability. It simply happened to us. Phoebe has been the “special” one. She has had an infectious ability her whole life to befriend many and to cherish and love all people in a non-judgemental and uncomplicated way. She began her journey in a different way. She is different chromosomally. She is different physically. She is different mentally. She is different behaviourally. She is, in fact, completely different! But she is unique and, for that reason alone, she needs to remain different. We wouldn’t have her any other way.
Libby Mitchell is a trained nurse and midwife. She is married to David and the family lives in Bellbrae, Victoria. Libby loves travelling, camping, bushwalking and bike riding.
Phoebe has made a difference to so many family members and friends because of her beautiful nature and attitude to life.
In so many ways, Jonah already possesses an intuitive understanding of unconditional love.
ANDREA TO GE ADJUST IMA
Jonah 158 |
A love more divine By Angela Farrell
Jonah was determined to be part of our family despite our attempts to avoid another baby at the time. His conception was a complete surprise. I consoled myself with the hope that our third child would be a daughter, but at the 20-week scan we discovered that son No. 3 was on the way. I cried a lot. The “just be happy he’s healthy” brigade started up and I went into denial, pretending we didn’t know the baby’s gender. Jonah William Farrell made his big entrance on June 21, at 5.45pm. As I pushed him out, the name Jonah, meaning “a dove”, came to me. I believe it was from God as it didn’t seem like my decision to name him. At that point, I looked at Chris, my husband, and said the name. He nodded and agreed it was perfect. A normal and natural homebirth, Jonah was a healthy weight and took to breastfeeding like a pro. The only hint of something different was his flat nose-bridge. Then over the next few weeks, I was a bit bothered by his snuffly nose and longish tongue. When a health nurse took over from our midwife at six weeks, she was concerned about Jonah’s low muscle tone. I wasn’t worried; don’t all babies develop at different rates? When Jonah was 10 weeks old, a friend commented that she had worked with babies with Down syndrome and she thought that Jonah had “that” look about him. I took Jonah to the doctor the next day. She referred us to a paediatrician regarding Jonah’s low muscle tone, but assured me that she didn’t think it was Down syndrome. Two days later, we saw a paediatrician, who had a chuckle when we mentioned Down syndrome. “Very unlikely,” he said. He checked Jonah over and decided to do blood tests and a karyotype to be sure. He thought it was just mild hypotonia. Boy, were we relieved. Three weeks and some botched blood tests later, I sat with Jonah in the paediatrician’s office. We didn’t think my husband needed to come this time. (Everything was fine, right?) Then came the words that ripped my world apart: “I’m sorry Angela, but Jonah does in fact have Down syndrome.” All I could say was, “You’re joking?” Then the tears came. I looked over at my baby in his car capsule, hardly daring to believe it was true. I picked him up and hugged him tightly, suddenly overwhelmed with the need to protect him. It was pouring with rain as we drove home, the stormy weather a mirror of what was going on inside me. When we arrived home I fell into my husband’s arms and we cried together. I stayed up late that night reading all I could about Down syndrome on the Internet. Most of the information was scary, listing all the negative effects of his extra chromosome. I tried to sleep but just tossed and turned. I ended up sobbing on the floor of our spare room. I didn’t think I was strong enough to cope with it all. I was afraid for my baby and what he may suffer. So I cried out to God, asking Him to take Jonah to be with Him, to spare Jonah, and us, the struggle of life with Down syndrome.
The next few days were a nightmare as I tried to hold myself together. This wasn’t supposed to happen to our baby, to us. In my grief I shut down emotionally and then I noticed that Jonah had done the same. He’d always been a happy, interactive baby, but now he was like a little statue. I quickly decided to “forget” my grief and hoped he’d be just Jonah again. With Mummy back, Jonah’s spirit also returned. But the struggle was still there. It wasn’t until I read an American book called Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives* that I began to have hope for Jonah’s future and ours. To read so many inspiring stories stirred up excitement within me. Our journey with Jonah was going to be different than what we had expected, but I was now sure it would be incredible. Jonah was 14 weeks old when his diagnosis of Trisomy 21 came through. Now our little treasure has just celebrated his first birthday. Such a crazy year, not one I’d want to repeat. I now grieve for the person I was and the way I reacted to the shock of finding out that Jonah had Down syndrome. My negative response came from my ignorance of what Down syndrome was and how it would affect our family. Living in our happy little bubble, I never considered that something like this would touch our lives. These things always happened to other people, I once thought.
Now we are ‘the other people’, I am pleased to honestly say I am glad Jonah is ours and was made the way he is. Now we are “the other people”, I am pleased to honestly say I am glad Jonah is ours and was made the way he is. I don’t view Jonah having Down syndrome as a curse anymore, but have fallen head over heels in love with this precious little person. We are blessed that our little guy is healthy, with none of the health issues that can affect people with Down syndrome. To keep Jonah healthy, we use natural and alternative options like osteopathy, homeopathy, massage, organics and supplementation. It’s working; so far he’s only had one mild cold. In so many little ways, Jonah seems to already possess an intuitive understanding of unconditional love. His mile-wide smile would soften the hardest heart and when he hugs me his whole body melts into mine. Living in a society that subtly tells me Jonah’s life is worthless and should have been ended before it really began, breaks my heart. At age 29, when I conceived Jonah, I had a 1 in 1890 chance of having a baby with Down syndrome. Much better odds than Lotto. Now, having worked through all the conflicting emotions and enjoying daily life with our little boy, I can say, “I am so glad we ‘won’ Jonah!” He has woken me out of my selfish slumber. He is teaching me the true meaning of selfless love.
Angela Farrell lives in Manukau, New Zealand, and is in the full-time employment of Samuel, Elijah, Jonah and recently born Annalise. Her husband, Chris, is a mechanical engineer.
* Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, edited by Kathryn Lynard Soper.
I know Darcy still has lots of things to learn and I know it will take time, but thatâ€™s OK. I know that good things come to those who wait. Julie Fisher | Langwarrin, Victoria
The one thing I knew for sure was that, even less than 48 hours (after Ella was born), I loved her so much.
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An unconditional love By Mandy Pearce
I always thought that as a mother I knew the true meaning of unconditional love. I had lived for my children, would have died for them, would have killed for them. I felt there was nothing they, or anyone, could do that would change those intense feelings. But I was lucky. I had two children from my first marriage who were clearly intelligent, funny, articulate, caring and talented. In short, easy to love. My husband, Leighton, also had two lovely daughters. Life in our house was great. Although Leighton had always been keen for us to have a baby together, I felt that my baby-making days were behind me. My children were getting older and more independent, and I didn’t want to go back there. Then, all of a sudden, I did. Within three months of the discussion with Leighton, I was pregnant. It had been a while between pregnancies; baby was due on my son’s 11th birthday and two months after my daughter’s ninth. At my medical appointment following my 20-week scan, the midwife read from the ultrasound report: “A tiny echogenic focus is noted in the left ventricle of the heart, which, in the absence of any other abnormality, is of doubtful clinical significance.” I asked the midwife what the implication was and she said she was unsure, so when the doctor came in, I asked him to explain it. He said it could be a soft marker for Down syndrome, but that they see it often in ultrasounds and it usually means nothing. My 12-week ultrasound had been fine as had my blood tests at that time. It did concern me a bit though, and at my next appointment, four weeks later, I asked a different doctor whether I should have further testing. I felt that if my baby had Down syndrome I could cope but that I would prefer to know now. He said it was extremely unlikely that it meant anything and wasn’t worth having further tests. I felt comfortable with this, but never quite forgot about it for the rest of my pregnancy. Even on the day I was in labour, I decided to take a really good look at the baby, once born, to make sure there was nothing that might indicate Down syndrome. Although it was in the back of my mind for those months, I never really considered that it might happen. After all, my family lived inside that golden circle, protected by the belief that those things happened to “other people”. The day of our baby’s birth arrived, a day before the due date. After a relatively easy labour and delivery, a beautiful baby girl was placed on my chest at 8.58pm. Yes, she was beautiful but she didn’t quite look the way I had expected. I remember staring at her with amazement, joy and love, as I had stared at my other children upon arrival, but there was another feeling too, an uneasy, something-is-not-quite-right feeling. Upon arrival (about half an hour after baby), the doctor did a quick check of her, then checked me out and did the necessary repairs. I sent Leighton out to make phone calls at that point, knowing that if he were a witness to the doctor’s needlepoint, he might just keel over. Once the doctor
had finished, I mentioned to him about the 20-week ultrasound report and asked whether he saw anything that might indicate Down syndrome. He headed straight for the computer, wanting to read the report, as there was nothing in my medical file about it. He told me there were a few things he was concerned about but nothing worth worrying about tonight, and that we’d talk more tomorrow. I told Leighton about this conversation when he came back but he felt our baby was perfect and that I was worrying about nothing. We settled down to baby-gazing, discussing her gorgeousness and making a decision about names. We had been tossing up between Lily, Charlotte and Ella, and although we had called her Lily for most of the pregnancy, somehow it didn’t seem right to me any more, and we settled on Ella Rose. The next morning, the doctor came to check on Ella, and when the midwife brought her back, she said the doctor thought Ella might have Down syndrome. She said they needed to take some blood samples and send them away to find out for sure. We were calm then, just nodding and saying, “Yep, yep, OK, no worries.” Not long after, Leighton’s parents came in and as soon as we told them, I started to cry as though saying it out loud made it real. That was a weird day. All day we had visitors and phone calls. We were trying to stay as calm as possible but still felt that we needed to let people know what was happening. People would come in, congratulate us, admire Ella and then we’d explain about the testing and that we’d know more in the morning. We hadn’t said anything to the kids yet, not wanting to tell them until we knew definitely. The following morning, Leighton and I waited for the test results. I said to him several times during the morning that I was fairly sure she did have Down syndrome, and felt like I was ready to hear that. But as it turned out, I wasn’t. When the midwife said, “We have the preliminary results back, and I’m sorry, it’s positive for Down syndrome,” I felt like the whole world stopped. I looked down at the floor and said something like, “OK, thank you,” and as soon as she left, I remember crying like I had never cried before, standing over the hospital’s plastic bassinet, clinging to Leighton and feeling more broken than I’ve ever felt. The main thing I felt was ripped off. This was not what I had ordered. I had plans for this baby girl and now she wasn’t going to fulfil them. What was to become of her? I had virtually no experience of people with Down syndrome, just a vague impression of people on the edge of society with pudding-bowl haircuts and unintelligible speech. This was not what I wanted for my girl. With every negative thought I felt more and more guilty. Every time I expressed a negative emotion, I prefaced it with, “I love her, but …” I was worried that people, Leighton especially, would think I loved her less because of the Down syndrome. The one thing I knew for sure was that, even after less than 48 hours, I loved her so much. I knew that if someone had offered to switch her for me, for a baby with the standard set of chromosomes, I wouldn’t have done it. I had no idea why this was happening to us, but for whatever reason, this was the card we had been dealt and I knew that together we could deal with it. There were many questions that kept me awake that night and in the nights that followed. If Ella had been conceived a month, a day, a minute earlier, would this have happened? If I hadn’t waited so long to get pregnant again, would this still have happened? Was it my fault? What was ahead for her in regard to her health? The more I learned about the health problems associated with Down syndrome, the more scared I became. What about education? Would she live independently? Was I selfish to be resentful that we might have to care for her our entire lives? And the one question I never asked aloud, would I be able to love her with that same all-consuming, unconditional love that I felt for my other children? Sure, I loved her on sight, but it was easy to love a tiny baby. 164 |
Could I love a one-year-old who wasn’t crawling yet? A two-year-old who had yet to say her first word? A four-year-old who wasn’t toilet-trained? A 10-year-old who couldn’t read yet? A 30-yearold who was incapable of living independently? Although there was no way to predict all of this, I didn’t know if I could cope with what the future held for Ella, or for us. I am ashamed to admit I had looked at mothers of disabled children before and wondered how they could love their children. I knew these mothers were special people (oh yes, that old chestnut: special children come into special families), but I didn’t know how to be special. I felt ordinary, tired, confused, scared and definitely not special. I would love to say there was a moment that clarified things for me, a day I could point to on the calendar and say, “That was it; that was the day I knew I could love Ella every minute of every day, forever”, but it wasn’t like that. I just came to realise gradually that I don’t love my other kids because of what they’ve achieved; I love them because of who they are. It’s the same with Ella. I love her laugh, her crazy sticking-up hair, the way she leans her head on my shoulder and rubs her hand on my face, the look of single-minded determination in her eyes when she sees something she wants. Milestones that haven’t been met and concerns for what the future might hold just aren’t important when measured against those kinds of feelings. She has taught me the true meaning of unconditional love.
Mandy Pearce lives in South Australia and works part-time for Ag Excellence Alliance as a project manager. Ella is fast becoming the boss of the household and is much loved by her parents and her big sisters, Brianna, Madison, Leah and brother Jack.
I realised that doing whatever we needed to do for Lizzy was never going to seem too hard.
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Our Lizzy By Adam Hyland
As I sat with my wife at our 14th wedding anniversary dinner, I had the uncontrollable urge to laugh. It was a laugh of relief at a burden that had somehow dissolved. “I don’t care!” I said. “What don’t you care about?” asked my wife, Sarah, looking confused. I smiled. “I don’t care that Lizzy has Down syndrome. I love her and she is our daughter.” It had finally dawned on me that I didn’t need to worry or care about what anyone thought about our newborn baby, Lizzy, about our family or me. We both sat there with tears in our eyes. From the day Elizabeth and her twin sister, Peggy, were born – when it seemed that all of our worst fears had been realised – until this point at the dinner a few weeks later, neither of us had really known what to think or feel about Lizzy, about ourselves and about our family’s future. Not only did Lizzy have Down syndrome, which was revealed to us after she was born, but she also had a severe atrioventricular septal defect – she had no wall dividing the left and right sides of her heart and her heart valves were not formed. Without open-heart reconstructive surgery she would be unlikely to see her first birthday. It almost felt like she was an alien; we didn’t know where she had come from. And I kept wondering: why was she here? For the first couple of days after she was born, it was hard for Sarah to look at her or touch her. We thought the next few months and years would be a burden of pain, worry and fear. That’s all we could see in those early days. But that night, at the dinner, I suddenly appreciated that it wasn’t about how hard things were going to be for us as parents or worrying what others would think of Lizzy or of us. The point of it was: it’s all about what we can do for Lizzy to give her the best and happiest life we can. And that’s what we have tried to do ever since that revelation. Thankfully her heart surgery went wonderfully well. It was so hard seeing our tiny girl, who couldn’t even make it to three kilograms for the surgery, taken away to theatre, knowing we might not see her again. We have been lucky to have had such great help from surgeons, hospital staff, therapists and friends. Lizzy is developing so well. She always seems so thrilled to see her family and friends. Her determination to do whatever her twin sister can do is wonderful. Now we really know why the most important thing in life is to make the best of what we’ve got, whatever that may be, and not to fantasise about giftedness. We know there are a lot of challenges to come: school, teenage years, and the tensions that might develop between Lizzy and Peggy; questions of independence; as Sarah and I get older, responsibilities may shift to Lizzy’s sister and brother. We can’t meet any of those challenges now. We can only do for Lizzy what she needs us to do for her today.
Thatâ€™s why I was laughing on that night of our anniversary. I realised that doing whatever we needed to do for Lizzy was never going to seem too hard. The reason Lizzy is here is because our family can all love her, help her and make her glad she was born. We are all glad she was born.
Adam and Sarah Hyland have three children, son Leo and twin daughters Peggy and Lizzy. Adam is a patent and trademark attorney and Sarah is a market researcher. They live in Sydney, New South Wales.
Now we really know why the most important thing in life is to make the best of what weâ€™ve got, whatever that may be.
The true gift my child’s disability has brought me? A benchmark. It’s only when you have experienced the lowest of lows that you can truly appreciate and acknowledge the highest of highs. I no longer sweat the small stuff. When you truly let go of all the small things you can’t control, you find yourself emotionally free and open. Nerida Sebben, author of www.carerstruth.com | South Morang, Victoria
I loved Airlie so much. In a few short days, she had wrapped her little soul around my heart and I was terrified at the thought of losing her.
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Living under an Airlie sky By Kristin Mooney
I had dreamt of having a family for many years. After trying unsuccessfully for what seemed like forever, we decided to try IVF treatment. After several disappointing attempts we finally had success: I was pregnant. I was so excited that I had to find out what we were having, and to my delight, we were having a baby girl. I racked my brain trying to think of the perfect name for her; one that was special to me. Soon after meeting my partner, Adam, we had gone on a holiday to Airlie Beach, in Queensland. It was the best holiday I had been on and I had never been happier or more at peace. Nothing seemed to matter there as I gazed into the Airlie sunsets every night. So I decided to call her Airlie Sky and spent endless nights picturing what she would be like and what her destiny would bring. When I became pregnant with Airlie, I was asked if I would like to have a screening that tested for several things, including Down syndrome. I decided I would. My results came back and I was told that I had a risk of 1 in 1600 of having a child with Down syndrome. I was also told this was considered a very low risk and was advised that no further testing would be necessary. After having several scans, we were told she looked fine and there was nothing to indicate Down syndrome. So Down syndrome never entered my mind again. When I gave birth to my beautiful girl, the world seemed perfect. I held her to me, marvelled at how tiny she was and daydreamed of what our life would be like together. I finally had my baby. She was absolutely gorgeous. I fell in love immediately. She was crying and confused as they lay her on my chest, but she looked up at me and I told her that it was OK and that I was her Mummy. She turned her little head and rested as if she trusted me that everything was as it should be. I didn’t sleep that night. The adrenalin was still pumping through my body as I lay awake trying to believe that I was actually a mum. I got up at 5am the next morning and got ready to wait for what I imagined would be a flood of visitors. One of my first visitors was a paediatrician, who I was told had come to check Airlie. I didn’t think this was strange and I was pleased to see him. After all, we did have a difficult delivery and Airlie did have a large bump on her little head. No one could have prepared me for what was to follow. As he undid her blanket and checked her over, he turned to me and asked, “What did you think looked different about her when she was born?” I looked at him in horror and asked him what he meant. He thought I knew. He asked me if I had heard of Down syndrome. My perfect world was shattered. I felt like fire had engulfed my body and my heart fell from my chest. At first I was in denial. I told him that all my family had those shaped eyes. I didn’t want to believe that this had happened to her. It wasn’t fair. The midwife who helped deliver Airlie had also suspected Down syndrome, but hadn’t said anything to me for fear I would not bond with her. But that was never a possibility.
After having tests, we had to wait an agonising week to find out the results. I remember lying on the bathroom floor praying to God not to do this to her and looking at other babies in the hospital, trying to figure out what the doctors thought was so different about her. It was distressing to walk the corridors, hearing people congratulate new parents, while our visitors were crying and telling us how sorry they were that this had happened to us. The results came back. Airlie Sky had Down syndrome. Instead of savouring the enjoyment of being new parents, we were thrust into the unknown world of parenting a child with a disability. I was afraid; not of my baby, but of the medical issues she might face. I loved her so much. In a few short days, she had wrapped her little soul around my heart and I was terrified at the thought of losing her. But most of all, I was frightened that I would not be able to be the mother she needed me to be. Airlie was born in perfect health and is now over three years old. We could never imagine life without her now. People ask me if I’d known that Airlie had Down syndrome, would I have kept her. Honestly, I still don’t know the answer to that question. I would like to have thought that I was a good enough person to have kept her but I would have been afraid and that may have affected my decision. I am glad I didn’t know because I may have missed out on meeting the most incredible person and the best thing that has ever happened to me. Every day she brings us so much love and laughter. I feel truly blessed by having Airlie in my life. She is such a happy, loving child. I have never met a person who can attract the complete attention of others the way she does, and she lights up every room she enters. She is such a social little person, who has the ability to make everyone she spends time with feel special. Airlie is not a disappointment to me in any way; I cherish every moment we share together. Airlie doesn’t ever have to be anything that she can’t be. But I intend to help her to be the best she can be. She surprises me every day with everything she does. Sometimes it’s hard that a label has been placed upon her. But she is just Airlie to us and most of the time I don’t even see her as having any challenges. (Though whatever challenges she’ll face, I’ll be there to hold her hand and I know she’ll be holding mine.) Life has certainly been different since we’ve had Airlie. It hasn’t been what we expected. The only thing I would change if I could, would be the reaction to her diagnosis. I am so sorry we were so upset. I wish, when Airlie was born, I could have looked into the future to see what life would be like with her. If I could have done that I wouldn’t have been crying; I would have been celebrating. I remember when we were first told that Airlie had Down syndrome, I turned to my partner and said, “Please don’t let this break us.” He turned to me and said, “She will heal us.” And she has. An angel lives at our house and her name is Airlie Sky. Her smile is as wide as the ocean and stars twinkle in her eyes. We cannot forget the message that she sends us each day; stop, breathe, listen and love. That’s all that matters now. We are living under an Airlie Sky.
After battling leukaemia for more than a year, Kristin Mooney passed away in August 2013. She is survived by her partner, Adam, and their daughter, Airlie, who live in Ocean Grove, Victoria.
Airlieâ€™s smile is as wide as the ocean and stars twinkle in her eyes. We cannot forget the message that she sends us each day; stop, breathe, listen and love.
The ambiguity of love By Kathy Evans
When my daughter, Caoimhe, was born almost nine years ago, I vowed to protect her. I thought that my love, pure and unalloyed, would act as a talisman throughout her life; that somehow the surefire knowledge of it would render her, if not immune, at least well insulated against the playground taunts, the sniggers and the snide comments that surely were to come. Who did I think I was? Mother Mary? As if my love could ever be that perfect, that unadulterated! What I have learned since her birth is that there are limits to love and that mine is only perfect in the hammock of hours slung between her bedtime and mine; when in the last vestiges of my wakefulness, I can look at her, untainted by some of the myriad feelings that bombard me during the day and seep into my dreams at night. The rest of my love is clumsy, well meaning, passionate, trammelled with guilt and all the murkiness of a silver pond being stirred with a stick. Love at the best of times is complicated; loving a child with special needs, I have found, even more so. I discovered this fact soon after her birth. One of the sadnesses I carry is that the joy of her arrival will always remain contaminated by the shock of her diagnosis nine hours later, or rather, the manner in which it was given, bluntly and insensitively; so much so that it tatters the edges of my memories and leaves them grey and frayed. I was alone and feeding her in the colourless light of a sterile dawn, when a midwife asked me whether I’d had prenatal testing. Puzzled by the randomness of the question, I asked why, and she blurted out that the doctors thought the baby had a “chromosome abnormality”. I was left alone to break this news to my partner. We had thought long and hard about whether we should have had testing in pregnancy. In the end, both of us felt that Down syndrome was a condition that was compatible with life, if not with our parental fantasies. I am not religious, but I believe that humanity is – needs to be – diverse and complex to give it depth. And I was aware that while tests may predict an extra chromosome, they would tell me nothing about the child I was going to have, or my ability to love. Chromosomes are not what a child is, only what it is made of. If by some small chance our baby were born with an extra one, I would love her all the more. That was the fantasy. In reality, the imperfectness of my love revealed itself in the early days of her life, when I would hold her tight and wish it were different. She would stare back at me, her navy eyes unclouded by the complicated emotions that bombarded my brain and forced me to shift my gaze from the radiance of her face to something far duller – a blob of sick to be wiped, a mess to be cleaned. I flung myself into the practicalities of raising a child with special needs and immersed myself in the literature that focused on doing; exercises to strengthen her muscle tone; sound games to help her speech; playgroups to join; equipment to hire. But there was nothing in the literature that
told me how to feel, how to love; a voice who could sing my story back to me in a language I could understand. From the moment of her diagnosis, she was marked. She was no longer just my child; in an instant she became a medical anomaly, a financial burden on the state, nature’s mistake, and I, her mother, guilty of inflicting my broken offspring on a society that prizes perfection. She was the outward sign of internal biological turmoil, the product of a union less than perfect. No wonder my love felt defiant, misplaced.
There was nothing in the literature that told me how to feel, how to love; a voice who could sing my story back to me in a language I could understand. Hours after her birth, the obstetrician was talking about her “intellectual deficit”. The best I could hope for, in the spectre of a far-away future, was that she might end up employed in a sheltered workshop or garden centre. Another doctor, thinking she was being sympathetic, described her birth as “bad luck”. The curdle of anger is ever present when I think back to those early weeks; the myths and misconceptions passed off as fact and delivered with the authoritative stamp of someone in a white coat. Nowadays I laugh. How futile it is to try to predict the future! My daughter, as it turns out, is quite ordinary. She goes to a state school and has a best friend. She has sleepovers. She sings, chats endlessly, makes up truly cringe-worthy jokes and hates going to bed. She is learning to read and writes carefully, each rounded letter a work of art completed with a flourish. She leaves me notes scattered around the house like wind-blown petals, declaring love; small scraps of paper inscribed with a blueprint for the universe. Nobody talks about the exquisite feelings that can be part of raising a child with a disability; my rapturous pleasure in her being feels forbidden. People feel sorry for parents of disabled children and I have learned to expect pity. The all-consuming joy that coexists with the darker, more complex emotions often remains a secret. But here it is: when turbulence rocks my life, I am soothed by her presence; curling up with her is like lying in a boat staring at the clouds. There is a vastness to her small self, her smile as soothing as balm. It helps to remember this, to hold on tight to the beauty of her in times when stress gnaws at my gut. Right from the start we, her parents, were determined to give her the gift of an ordinary life, with all the opportunities her sisters had, and the effort of doing so is proving exhausting. The detritus of endless paperwork – stacks of forms and minutes of meetings that usher her through life – swells like a tidal wave. Prejudice stalks in doorways and pops out disguised as know-how. “All Down’s children are tone deaf,” one music teacher informed me when I asked about piano lessons. “Don’t bother trying to get her to learn an instrument.” Another well-meaning person suggested that I teach her the Macarena; that being able to do a schoolyard dance would be good for her self-esteem. Through gritted teeth, I pointed out that Caoimhe learnt French, the violin, ballet; indeed, has performed on stage at the National Ballet School; so forget the bloody Macarena. Of course, I didn’t put it quite like that. It made me realise how outdated attitudes remain towards people with Trisomy 21. As if they are still held hostage by worn-out images of pudding bowl haircuts, elasticised trousers and life in sheltered workshops. 176 |
Still, I am aware that my daughter’s achievements do not come easily; they require a dogged determination from her, bags of energy from us, her parents, as well as a high level of empathy and patience from her teachers. Sometimes I wonder if I am her mother or her coach; a role I am not particularly comfortable with. I also wonder what Caoimhe thinks about all the pushing, the coaxing, nay, bribing (chocolate works wonders) that is often required to persuade her to step up and take her place in the spotlight next to her able-bodied peers. Perhaps, given the choice, she would prefer to simply exist, safe in the arms of the family, without ever having to experience the disappointment of failure, the pleasure of success. She is most comfortable mulling around the house, talking to the dogs or her two older sisters, who at times struggle with their feelings for her – intense love mingled with embarrassment and anger at the demands she makes on my time. But I think they also recognise that to love someone more vulnerable than you is a privilege, and I see time and again in our family how my youngest daughter reveals the truth of us to ourselves; she is unwittingly, our greatest teacher. With strangers she remains intensely shy. Once, when I asked her why she was avoiding some children in the playground, she said she was afraid they’d be scared of her face. This was the point when I realised that my love, however passionate, was not enough; it wasn’t magic. We sat in silence holding hands, the fear of the future crashing loud in my ears. I could no more protect her than put out the stars; there were some things she was going to have to face on her own. I looked at her and realised how much courage she was going to need to exist in this world, this life.
And I realise that at least for now, she has all she needs; that my fears will not necessarily be hers. I wonder what life will be like for her, looking different, feeling different. Sometimes when I think about her internal sense of self, I am suffused with guilt. I knew that terminating a pregnancy affected by Down syndrome would leave me tarred with enough to last a lifetime, but it seems I have not escaped the twang of guilt’s muscle; the uneven texture of my love only serves to increase it. I have summoned her into a world where babies with Down syndrome will perhaps soon cease to be born, where people are so insecure about difference they are prepared to mutilate themselves through plastic surgery in an attempt to conform. I called her into being, blithely ignorant that the services she would need to help her live a so-called ordinary life are at best, patchy, at worst, shambolic. Naively, I thought my love was all that was required. When I was a child, growing up in a small village in the North of England, it was local infant folklore that if you passed under a railway bridge the same time as a train was crossing it, you could make a wish that would come true. Now I find myself child-like again, closing my eyes tightly under railway bridges carrying rushing trains, wishing more than anything else that she were bestowed with a 24-carat resilience. Sometimes I see shiny glimpses. This is usually when she is struggling to learn something new, like undoing a button or climbing a tree; the sheer effort required leaves her fizzing with frustration. Failure invokes a fury that inflates her like a rush of air in an empty crisp packet before she collapses in my arms. She tries again and again, until the reward is hers to relish. It is both painful and exhilarating to watch; these are the times when I still ache to wrap her in more love than I know how to give in the hope that it will somehow protect her. And then I see her in her ballet class doing her pliés, giggling with her best friend, mastering a new piece on the violin, and I realise that at least for now she has all she needs; that my fears will not necessarily be hers.
I have no idea what the future holds for Caoimhe, but it will hopefully be richer, more challenging and more diverse than what was predicted by the medics nine years ago when she was just a raw, red newborn. The gift of an ordinary life is so much harder to give than I thought. Perhaps all she needs – all we both need – is the courage to let it unfold. Caoimhe’s achievements do not come easily, but they come. And when they do, the pleasure that flows through my veins and hers, still so tangled up in each other, is extraordinary.
Kathy Evans lives in Melbourne, Victoria, and is the author of Tuesday’s Child, a memoir about her daughter. See: www.randomhouse.com.au/books/kathy-evans/tuesdays-child-9781863255141.aspx
Caoimhe leaves me notes scattered around the house like wind-blown petals, declaring love; small scraps of paper inscribed with a blueprint for the universe.
Matthew has made me realise that family, friendship and love are really what matters.
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One step at a time By Fiona Wales
I met my boy with Down syndrome when he was 10, so it wasn’t a shock. I was fully aware that my partner had this amazing little boy, Matthew, and that he would soon be my stepson. Together with his brother and my two daughters, we were to become a family. Matthew and I hit it off immediately and together, with Matthew’s father Ross, we began our unique journey. We have had our good and hard times like all families and sometimes we may have to treat the situation a little differently because of Matthew, but when you see Matthew dance and sing, you realise just how amazing he is. He dances with a group called the Happy Tappers, and they perform regularly in public. He also dances for his school, for which he always receives a standing ovation. I am so proud of him when he dances. He dances with his whole heart in it. It brings me to tears. (He also does a pretty good air guitar.) Matthew loves life to the fullest. He cherishes his family and friends. He has made me realise that family, friendship and love are really what matters. As a teenager, Matthew is doing the normal teenage things. We have to ask him to turn his music down. He is counting the months till he can wear a suit to the school formal, counting the years till he can have a beer with Dad or he’ll laugh at things I think he shouldn’t understand, but does (that is, sexual references). I think we are lucky to have Matthew in our lives. He has taught me to be more understanding of people. When I was growing up, I would visit my ill uncle with my mother and Nana, and I remember being scared of the sounds he made, how fast he ate or of the other patients he lived with. Recently, I revisited my uncle with my mother and aunty, and this time I was more confident and caring. I felt proud that I could actually assist my mother with her brother and that I wasn’t afraid. Matthew has taught me patience. He reminds me every day of the important things in life, like family and friends, laughter and happiness. He loves to remember everyone’s birthdays and loves the celebration that goes with it. Now that Matthew is older, it is harder to let him try new things on his own, only because Ross and I want to protect him. But we have realised we have to let go for his benefit so that he can mature. This has been harder for us than it has been for Matthew. He has coped well and enjoys being independent. Matthew started working at McDonald’s this year (with a school program) and enjoyed every minute of it. He cleaned tables, served food through the window of the drive-through and swept floors. He was so proud that he worked at McDonald’s. Not to mention, it’s his favourite takeaway. Matthew is also lucky to have an extended family who loves him very much. My family has welcomed him with open arms, so being a blended family has its advantages. We have a good relationship with Matthew’s mother and her network of family and friends are all fantastic with Matthew too.
I have friends that are in awe that I have taken on such a responsibility. I can appreciate their opinion, but Matthew has been a part of my life for the past six or more years now and I canâ€™t imagine my life without him. With Ross and our children together, we continue our journey, step by step, taking on each chapter and looking forward to the future.
Fiona Wales lives with her family in Davistown, New South Wales.
Matthew is counting the months till he can wear a suit to the school formal, counting the years till he can have a beer with Dad.
We shared our fears, hopes and dreams for our little girl and decided that we would never take a step back with Katie. We agreed to face the ups and downs together and confront anything that was thrown at us head on. If someone told us ‘no’, we’d change it to a ‘yes’, or if we couldn’t, a ‘maybe’ would suffice. Alison and Patrick O’Reilly | Donald, Victoria
Ben has turned out to be more light in one little body than I ever knew could exist.
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Being Ben By Nadia David
We found out that our son, Ben, had Down syndrome four days before he was born. It was a terrible shock. We had been having ultrasounds every three weeks or so throughout the pregnancy. The first ultrasounds were checking the development of the placenta, then, just as they thought that was under control, they found he had an enlarged heart. The ultrasounds showed his heart keeping pace with the rest of him, just bigger than it was supposed to be. The doctors didn’t seem concerned about this and we just thought he might be the Phar Lap of babies! At 36 weeks they told us he hadn’t grown since the last ultrasound. I didn’t understand how serious that was until they recommended an amniocentesis then and there. Getting a large needle shoved into your belly is not something I would recommend for fun, but at least we knew, two days later, that we were going to have a baby with Down syndrome. Those two days were a blur of searching for every scrap of information about chromosomal abnormalities and crying almost without respite. This was the first stage of grieving for my husband and me as we realised that we may have a boy who would never be the son we had dreamed of. If only we’d known how wrong we were! Ben has turned out to be more light in one little body than I ever knew could exist. Even when he’s grumpy, people are drawn to him. Wherever we go people come up to us, “What a beautiful boy!” they exclaim, touching his face, hair and hands. He’s just learnt how to wave, so now he waves at everything: his dad, the dog, a couple walking past; nothing and no one is left out. Someone is always smiling at us when Ben is around. Still, some things have been hard. We wanted a natural birth but I had to have a caesarean. We wanted to breastfeed exclusively, until he weaned himself. We did, but it took over eight weeks of expressing and feeding him through a tube in his nose, then a bottle, before he could suck enough from the breast to grow. On the other hand, other things have been a brilliant success. We wanted to introduce solids through Baby-Led Weaning (where Ben fed himself from the start of weaning). Ben has developed incredible dexterity from this approach. We also wanted to take him everywhere with us. He’s such a good traveller now; he’s even got a frequent flyer card. Before we had Ben, I had never met or spoken to anyone with Down syndrome. I remember being squeamish about people with intellectual disabilities. I was frightened of them, I guess, frightened of their “otherness”. To be honest, all of that is still there to a degree, but I now have a layer of empathy and understanding thanks to Ben. I now know lots of people who are connected to someone with Down syndrome. What an eclectic crowd that has turned out to be. A more compassionate, giving, stubborn and inspiring group of people you’d be hard-pressed to find. I am grateful to Ben for exposing me to people I would never in my wildest dreams have presumed I would meet.
To say our lives have changed immeasurably would completely understate the truth of the situation. Every new parent experiences that change. But every new parent isn’t forced to accept that their child will never be the same as them or may never achieve more than them. Ben will not be the prime minister, an astronaut or a policeman. Most days that is OK. But some days it tears out my heart to look at him playing and grinning at me, and I realise I can only help him make his armour. I can’t wear it for him. Then it hits me: it’s me who must change. I must remember we all have our place and our role to play. And Ben’s role seems to be to bring out the gentleness and sunshine in all of us. To make us smile through our tears. And he’s world-class at that.
Nadia David lives in New South Wales and is a criminologist, a lawyer and proud mum of Ben and his little sister, Elena. She is married to enterprise architect Charles Dean, Ben and Elena’s devoted dad, and is a competitive horsewoman in her spare time.
Christa is my trooper, a fighter and at every turn she has been defying the odds. Jennifer Navarro | Melbourne, Victoria
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Thank heavens for Daisy By Kate Hewett
I felt euphoric the moment after Daisy was born. Compared with my first delivery, I couldn’t believe she was out and with such little effort. I couldn’t have imagined a happier time than right at that moment. I lay on the bed in a pure, unadulterated state of bliss when my partner, Richard, returned from the Special Care Nursery. We were certainly not prepared for the news: “We think your daughter may have Down syndrome.” And bang, just like that, the world I had known changed, imploded. I was thrust into a cyclone. How could this be? Surely I would have known there was something wrong, a gut instinct during pregnancy? This wasn’t supposed to happen to me. Other people had babies with Down syndrome. Not me. My initial external response was an unemotional one. I thought, “Well, that’s that then.” I could see Richard had been crying. So I allowed him time to grieve and reassured him it’d be OK. He seemed to pull together, but then it was my turn. I cried and cried. How was I going to cope with this? How was I going to react to her when I saw her again? Would I be able to love her? How would I cope with the stares at the supermarket? Would we have her living with us forever? Who would look out for her when we were gone? And Charli, our beautiful first girl; how would this affect her? She wouldn’t have the adult relationship with her sister that I had imagined. But then worse news was to come. A nurse came into the delivery suite and alerted us to the fact that Daisy wasn’t doing so well. She was having trouble maintaining her oxygen saturation levels, her platelets were dangerously low and she was entering perilous territory for risk of brain haemorrhage. And then, bang again. My endless questioning was over. My maternal instincts kicked in and I was away. My baby needed me and here I was wallowing in self-pity. I was ashamed of myself. I pulled myself together, showered and headed with purpose to the nursery; and I can tell you with all honesty, I have loved her ardently ever since. It was a full day before I was allowed to hold my darling girl, and my heart is awash with emotion as I recall the feeling of that moment. All had become calm. There was no need to be afraid. She was perfect. We needed her to be well, of course, but aside from that, my uncertainty subsided. Daisy made a full recovery and after day eight, we were allowed to go home. It’s now four years on and Daisy is achieving milestones much faster than we had ever allowed ourselves to hope. At three years old, she was diagnosed with Juvenile Arthritis, which was a dreadfully sad occasion for me. When I examine my feelings around that time I thought it just seemed to be a cruel injustice. As if it wasn’t enough for her to have to battle her way through life with an intellectual disability, now she was going to suffer physical pain and probable additional
disability. But as is typical of Daisy, she has taken it all in her stride and manages well on daily medication and the occasional joint injection of steroids. My main fears for Daisy have been and remain about the way society will accept her. It seems to me that the more the human race evolves, the faster we lose touch with matters of ground-level importance. Is it my imagination or, with the advances of science, are we trying to ensure that people with Down syndrome never make it through the embryonic stage of life? Why is this? As was pointed out to me early on, it would be unwise to base my hopes and aspirations for Daisy on how I see adults with Down syndrome today. Less than 50 years ago, parents of babies born with Down syndrome were encouraged to have them placed in homes and to forget about them. There was no early intervention, no specialist education programs and no encouragement to achieve anything. We now know better. We know that people with Down syndrome can, and do, achieve extraordinary things. More importantly perhaps, we also know that people with Down syndrome achieve ordinary things. I feel that the most important factor about people with special needs, such as Down syndrome, is that they have an enormous capacity to take the robotics out of the human race. We are not all supposed to be the same. The world cannot operate that way. Ours is not a sad story but rather one of joy. It was soon after having Daisy that we came to view her as a most wonderful gift in our lives. She has grounded me in a way that I am not yet fully able to describe. She fits perfectly into our little family and is as much of value individually as anyone else. She also has an innate ability to bring out the best in people. I have become particularly aware of people who look and act differently to those of the mainstream and itâ€™s with a sense of purpose that I value and embrace them. And more than anything else, I want to scream to the world that people with Down syndrome are supposed to be here. My heart aches when I allow myself to feel just how lucky we became the day Daisy was born. Thank heavens for you, Daisy.
Kate Hewett is a registered nurse and her partner, Richard, is a builder. They have three girls, Charli, Daisy, and Matilda. They also have a Jack Russell terrier, Joey. The family lives in Melbourne, Victoria.
The most important factor about people with special needs, such as Down syndrome, is that they have an enormous capacity to take the robotics out of the human race.
Michelle brings so much joy to our lives and all the tears we cried before she was born have already been outweighed by smiles and laughter.
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Did God drop a stitch? By Jonene Petty
“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Psalm 139:13-14 Since becoming a Christian in my final year at university, I have been comforted by Psalm 139 and the knowledge that God knows me perfectly. God knows my every thought, word and deed and even knows the number of hairs on my head! It makes me feel special to know that I was “wonderfully made” by God and that He had devised a plan for my life even before I was born. Part of God’s plan for me involved meeting my wonderful husband, Craig, a little later in life than I would have liked. We moved to the United Kingdom as soon as we were married and enjoyed a fabulous four years of success on the work-front and loads of travel around Europe. However, we didn’t enjoy much success in conceiving a baby. We tried for almost three years and during that time we suffered two miscarriages, so on returning home to Australia we decided that IVF was our next step. We attended a number of appointments with an IVF doctor and were due to start the program in earnest at our first nurse’s interview. As a result, we were elated when the pregnancy test that I conducted the afternoon before this interview was positive. I say “elated” – after all we had been through it’s probably best to describe our reaction as restrained elation. I was 38 at the time and we knew full well the biological clock was ticking. However, it really felt that God’s hand was at work as we were “saved” just in the nick of time from the emotional roller coaster and expense of undergoing IVF. Our initial sense of relief then became an anxious wait as we hoped and prayed that we would reach the so-called safe 12-week mark. I also knew that I wouldn’t be able to feel truly joyful about my pregnancy until we had the first scan and were told that everything was fine. Being cautious, I did a blood test the week prior to the scan so that we could get the best picture of how everything was tracking. Rather than alleviate our concerns, our visit to the ultrasound centre sent them sky high. The presiding doctor informed us shortly after the scan that we had a 1 in 2 chance of having a baby with Down syndrome. I had never heard of anyone receiving such odds. Basically, it was a 50-50 chance, the toss of a coin. My head was swimming as I struggled to comprehend what the doctor was telling us about the potential diagnosis and the difference between two ways to conduct a chromosomal analysis; chorionic villus sampling (CVS) and amniocentesis. Mercifully, when we left bleary eyed, it was lunchtime and the waiting room that was overflowing when we arrived was now empty.
When we got home we cried our eyes out as we faced the daunting prospect of raising a child with special needs. However, due to our faith, we faced no dilemma about termination. Over the next few days we did some reading about the two different tests that were available. After visiting with our obstetrician, we decided to opt for the CVS. The results weren’t going to change our decision to continue with the pregnancy but we just needed to know. Thankfully, our obstetrician’s rooms were attached to the hospital that housed the ultrasound centre and they fitted us in straight away. I received the phone call that would change our lives two days later. When the doctor began her sentence with the words, “I’m sorry,” I knew I wasn’t going to receive the news I was hoping for. After quizzing her about the accuracy of the results, I hung up and began crying floods of tears. At the time, we were staying with Craig’s parents as we were waiting to move into our new home. I stayed in our room and sobbed. Craig, true to the meaning of his name, was a rock, and told both sets of parents the news as I was in no fit state to see or speak to anyone. So many questions were going over in my mind. Would we make it to the end of the second trimester given the high risk of miscarriage? What would our baby look like? Was the baby going to suffer from health issues in addition to Down syndrome? How well would he or she develop? How were we going to care for a child with special needs? Did God make a mistake when He knitted this child in my womb?
Michelle is just like any other baby and all the things we do at early intervention are simply part of our routine. When I emerged from our room the next morning, I went downstairs and Craig’s mother greeted me with a big hug, a few tears and some wonderful words of wisdom, “Remember, we’re all made in the image of God.” In the book of Genesis, in the Bible, it tells us the climax of God’s activity was the creation of mankind in His image and that all He had made was “very good”. I knew in my heart that this baby was meant to be; that he or she was a deliberate part of God’s plan for Craig and me. This didn’t prevent the steady flow of tears over the next few months as we adjusted to the diagnosis of Down syndrome, but it did ultimately help us to accept it. Although Craig and I didn’t feel especially equipped to look after a child with special needs, we did know that we could love him or her and that the rest would fall into place over time. When we attended our next appointment with the obstetrician, we found out the results of the full chromosomal analysis. The results stated, “this abnormal karyotype has an additional chromosome 21 in a female.” Our baby girl may have been described as “abnormal” because she has an extra chromosome but we knew that she was definitely no mistake. We also knew that the name Michelle was just right for her because it means “like God”. Our choice of this name, and its associated meaning, increasingly helped us to think of her as a gift from God, rather than a “daunting prospect”. Before every meal we always say grace using the following words, “For what we are about to receive oh Lord make us truly thankful.” Once I safely reached the end of the second trimester I found myself saying the same words in relation to Michelle. Gradually, the pain lessened, the tears didn’t flow so freely and most importantly the love we felt for this baby grew and grew. Rather than 194 |
asking why, we felt increasingly grateful for this precious gift from God growing inside me and we looked forward to meeting her. When Michelle arrived at 38 weeks, I felt a huge sense of relief as I finally had answers to many of the questions that had previously plagued me. We knew she had arrived safely, that she was beautiful with big blue eyes and that, at this stage, she didn’t suffer from any health issues. Now, quite a few months down the track, we know that despite low muscle tone, she is developing well thanks to the early intervention program she started when she was six weeks old. Michelle is just like any other baby and all the things we do at early intervention are simply part of our routine. Michelle brings so much joy to our lives and all the tears we cried before she was born have already been outweighed by smiles and laughter. Now, rather than feeling daunted, Craig and I feel excited about doing all we can to help Michelle reach her full potential. Even if Michelle is a little different we know that God wonderfully made her. He doesn’t make mistakes, even when “knitting”. For that we are truly thankful.
Jonene, Craig, Michelle and baby Verity live on the North Shore in Sydney, New South Wales, and are committed to the fellowship at their local Anglican church. Jonene trained as a lawyer and is a former media executive but currently enjoys devoting her energies to her children.
In Sean time By Michelle Somerville
My husband, John, and I have five beautiful and happy children. They all have their unique characteristics, are all learning to be fiercely independent and all have the normal arguments that any large family might have. We have a very busy household with lots of laughter and non-stop mayhem. Our youngest son, Sean, also has Down syndrome. When I was 20 weeks pregnant, I went for a regular ultrasound. As I lay there looking at the beautiful images, I thought how terrible it must be for someone to find out that there was a significant issue with their baby, like a major heart problem. Our baby looked perfect to us and we enjoyed looking at all the images. At the end of the ultrasound, we were told there were significant markers to indicate that our baby would probably have Down syndrome. (I was in such shock that even now, I don’t remember what the markers were.) John and I immediately burst into tears and were taken to a room where we could have some time to ourselves. Afterwards, when we tried to call our parents, I wasn’t even able to say the words, “They think our baby has Down syndrome,” because I was choking up so much. I didn’t go back to work that day and headed straight for the library, the bookshop and Internet, to find out whatever I could about Down syndrome and order as many books and DVDs as I could find. After about three weeks of reading as much as I could, I told John that I couldn’t read any more because it was too upsetting. While there were plenty of books describing Down syndrome and its many “problems”, there was nothing that could really help me understand what life might be like for us and how we would cope. (I was assuming that it would be amazingly difficult to cope.) Many of the books were written in the 1980s or ’90s, and I hoped that things had changed since then. We eventually told our family and friends one by one, initially selectively, and then as many people as we could. I said to John that I wanted to practise telling people without crying, so I would tell as many people as I could that I just wanted everyone to be excited and happy when our baby was born and not to be focused on the Down syndrome. It took some time, but eventually I also met some other mothers of children with Down syndrome and realised they were “normal”, so loving and committed (like most mothers), and that life goes on. I didn’t know back then that, barring any medical issues, our lives would go on to be absolutely normal. Early on, a wise person said to me that we shouldn’t change our life plans because of the Down syndrome, but I didn’t believe them. Now, I do. We may have challenges in the future, but I am sure that we will for our other children as well.
Sean is the most settled and easiest of our five children (apart from our oldest daughter, Alex, so she says) and an absolute pleasure to be with. Thankfully, Sean hasn’t had any complicated medical problems and he has been constantly developing, just like the other children. He has done so many new things in the past few weeks that I have not been able to keep track of them all. He is achieving all his milestones, albeit a little later than the other children. For some reason, I don’t feel pressured about him meeting the next milestone. I’m happy for it to be achieved in “Sean time”.
Michelle Somerville is a busy mum to five young children. She grew up in Wangaratta and studied accounting at university. She is currently working in the assurance practice of KPMG in Melbourne, Victoria, but is soon planning to retire to pursue a career as a non-executive director.
Early on, a wise person said to me that we shouldn’t change our life plans because of the Down syndrome, but I didn’t believe them. Now, I do.
One thing I am learning as a parent is that it requires a lot of patience. Iâ€™m not sure I was a patient person before having children. But being patient helps me to cope better with the unpredictable demands of child raising. Teresa Haddock | Randwick, New South Wales
We fell further in love with Lily the moment we saw her. Now she was our baby, not a diagnosis.
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Lily’s story By Tracey Giles
We had been trying to fall pregnant for six months and when the two lines showed up on the pregnancy test as positive, we were so excited. We were going to have a baby of our own, something my husband and I had talked and dreamed about since we met seven years earlier. We remained in that blissful state, keeping the big news a secret until we were about 11 weeks into the pregnancy. Then one night, I happened to tell my mum how tired I felt, and she asked, “You’re not pregnant are you?” That was it; I beamed a smile and couldn’t hide our secret any longer. Our news spread like wildfire as we began to tell our friends. Everyone was so excited. A short while later, it was time for the routine 12-week scan. We would see our precious baby for the first time. We were in awe as a wriggling little jellybean showed up on the screen. We joked that it was going to take after Chris because it hardly stopped moving for the whole scan. Chris has always said, he knew even then that something was up; he had this strange feeling. But for me, the reason for the scan – to search for abnormalities – and the possibility that our baby could have Down syndrome, or any other condition, never crossed my mind. It still didn’t enter my thoughts as I received a reminder phone call to see the doctor about the results of the scan. I was on a 10am start at work that day and mine was one of the first appointments at the doctor’s for the morning. As I sat in the doctor’s office and she explained the results of the scan, overwhelming fear set in. I tried to remain strong, I tried not to cry and I asked questions as the doctor explained that our baby had a 1 in 11 chance of having Down syndrome. The doctor handed me a box of tissues as the tears started to fall. I was numb as I walked out of the office to the front desk to pay for the appointment. I was numb as I walked to the car and got into the driver’s seat. I quickly rang Chris to tell him the results; I needed to hear his voice and feel his love and support. He quickly told me everything was going to be OK and explained that he was leaving work immediately to come meet me. On the way, he rang my parents to tell them the news. It wasn’t long before I got a phone call from Mum and Dad. My tears kept coming and now it was mingled with their tears as I explained the results. Then it was time to ring work; my shift had already started. I again explained the results to my work colleague while choking back tears. I expressed my appreciation as she expressed her sympathy and told me not to come to work for the next two days, so I could get my head around everything. Chris arrived and we stood there hugging each other. I was so scared and kept asking him, “What if the baby does have Down syndrome?” I had never known anyone with Down syndrome and I had no idea what it meant for our baby. Arriving home that day, Mum and I sat down at the computer and read all we could about Down syndrome. We looked at beautiful pictures of children with Down syndrome, we read stories of how parents coped when finding out, we learned about the possible medical complications and much more. Then taking the advice of one parent, I stopped reading. I knew enough now, I had an
understanding. Every child is so different and it was no use worrying myself. Anyway, our baby might not even have Down syndrome. We had a 1 in 11 chance the baby did, but a 10 in 11 chance he or she didn’t, right? The next month was a blur of tests and waiting. Thoughts niggled at the back of my head and I would burst into tears for no apparent reason. After much thought, we decided to have an amniocentesis. We needed to know either way so we could deal with the results before the baby was born. I especially needed the confirmation. Chris had decided that whatever would be would be. He held fast to the idea that children with Down syndrome were a gift and God doesn’t let us face things we can’t handle. After the amniocentesis, at 16 weeks, we had to wait an almost unbearable two weeks to find out the results. I carried my phone with me at all times. Then one afternoon, while I was at work, it rang. I left the room and stood in the corridor as the doctor told me the news and explained our options. Termination was never an option for us. A baby’s life is a gift from God and we could never end that precious life. Although I had known there was a real chance the baby would have Down syndrome, as I hung up the phone, it hit me like a brick. When I rang Chris, he reassured me again that everything was going to be OK. Chris left work early and began to tell family and close friends the result. As I cried with my mum, we talked about the things I was scared of and tried to come to terms with the results. I was scared of how other people would treat our baby, scared of possible health issues and scared of the unknown.
We fell further in love with Lily the moment we saw her. Now she was our baby, not a diagnosis. Over the rest of the pregnancy, I tried to remain positive. I joined the local Down syndrome association and talked to a parent of a teenager with Down syndrome. I talked to a genetic counsellor that a friend had put me in contact with and I read positive information and stories. I had so much love and support from family and friends. Chris especially dealt with the whole situation with such ease and was able to help me through so much. However, there were still many times when the niggling thoughts in the back of my head brought fresh tears. Then the day finally came. I had gone with Chris to his work because Mum and Dad and my grandparents were all out for the day and no one was going to be around to keep an eye on me in case I went into labour. I spent the day reading and watching Chris work. At about 6.30 that evening, we were eating dinner and I began to feel unusual cramps. Our baby was coming. After getting to the hospital, the labour went well, and by 5.11 the next morning we were holding our precious girl, Lily May. We fell further in love with her the moment we saw her. Now she was our baby, not a diagnosis. We had so many visitors, flowers and gifts over the next four days in hospital. We enjoyed the bliss of having a newborn. However, there were still feelings of fear and apprehension. Apart from a short breastfeed straight after her birth, Lily didn’t feed at all during her first day. That night they took her to the Special Care Nursery and she spent the night on monitors with a feeding tube. I felt so sad. I had just had our precious baby and now they had taken her away from me. I so wanted to breastfeed but she wasn’t latching on. After seeing a few lactation consultants and introducing a nipple shield, 202 |
Lily took to breastfeeding. That was one obstacle out of the way. But the tests, visits to the doctor and early intervention haven’t stopped since. We have had times when we’ve had two or three appointments in the one week. Each time Lily is given the all clear or she makes progress, I feel a sense of relief. We have been so blessed. Lily’s heart is fine, she has good eyesight and hearing and we have had only one medical issue so far. Lily has hypothyroidism, which means her thyroid is underactive. She now takes half a tablet each morning, which has boosted her levels back to normal. Lily turned one last month. She is such a happy, active and determined girl. She has already achieved so much and taught those around her so much. Lily has been crawling since 10 months and has now started to pull herself up on things. Each time she reaches a milestone, it is so exciting. She brings us such joy. There are still times when I worry about the future but I must remind myself to take each day at a time, because nobody knows what the future will hold. If the past year is anything to go by, our future with Lily will hold endless amounts of joy and happiness and the trials along the way will make us stronger and more appreciative of what we have.
Tracey and Chris Giles live on a property at Mount Royal, New South Wales. Tracey trained as an early childhood teacher but now enjoys being a stay-at-home mum. Chris is a field operations supervisor. A little brother, Spencer, has since joined Lily and they hope to have more.
Angie 204 |
Our angel in disguise By Christine Early
Our precious long-awaited daughter, Angela Christine Early, had arrived. The joy and delight of being told we had a “perfectly healthy wee girl” was short-lived. Not long after, we were dealt the most shattering blow we had ever faced: “We’re sorry to have to tell you, but we think your daughter may have Down syndrome.” Dreams of sharing my life with a vivacious, gorgeous daughter were shattered into a million tiny pieces. The grief cut so deep, I couldn’t face people. I wanted no visitors. I thought they were just coming to stare at my child and to steal a glimpse of how “different” she might look. My tears seemed to flow constantly and anything would set me off. Fortunately, my husband, midwife, family and friends were amazingly supportive, surrounding me with their love and acceptance. I met innumerable doctors, nurses and specialists in that early phase and soon everyone’s name became a blur. Days melted into one big haze. Less than a week after we left hospital, we were readmitted. Angie had stopped feeding altogether and was in a constant state of sleep. A nasogastric tube had to be inserted and remained in for the next six months. The trauma of listening to our little girl scream as the tube was pushed down her tiny nose still brings tears to me today. Angie hadn’t chosen this. It wasn’t her fault. Life seemed so unfair. Why should she have to suffer? It was awful to watch needles being jabbed into her and to forcefully hold her still so the nurses could find the right spot. Hospital staff were well meaning, some full of compassion, others left a lot to be desired. One very unhelpful nurse told me, “These type of children would have died quickly years ago,” and that it was, “Probably for the best.” A kinder nurse told me I was, “The sweetest mother she had ever met and that Angie was a very lucky girl to be born into our family.” Conflicting advice left me confused and unclear about how best to look after my daughter. Our paediatrician was a lovely lady. She would visit us regularly in hospital with a whole troop of trainee doctors. One day she asked them to wait outside so she could talk with me about how I was coping. Her acceptance and understanding of how difficult it must be for me was so sensitive and thoughtful. She never pressured me into leaving and I was able to stay with Angie in hospital until I was ready to use the feeding machine with Angie at home. What a daunting process that was. Tubes had to be fitted around all sorts of knobs, no airlocks were allowed and cleanliness was kept at a premium. I hardly left the house for the next six months. The process of feeding Angie took up to eight hours a day. I felt like an overworked dairy cow with my double milk express machine. I would pump, then feed Angie with the machine, while having her mouth pressed up to my breast so she would associate food with me. I would freeze any spare milk
and then have to clean everything up. But it paid off. At six months old, Angie was able to have the nasogastric tube taken out. She was being fully breastfed, a cause for celebration. I now had more freedom. I could take Angie out to meet the world, but I was hesitant of other people’s reactions. Would other children accept Angie or make fun of her? Our first trip to the local Mums and Bubs music group was a time of uncertainty for me. How would Angie fit in? I need not have worried; she fitted in just fine. People treated her like all the other children. What a relief it was. Angie grew to love music. Singing is now top of the fun activities she likes to do. Angie and I attended the Champion Centre, a clinic set up for children with Down syndrome, to have early intervention therapy. “We welcome your child,” was their motto. What a wonderful phrase that was. It showed that others accepted and wanted to help my child. Getting to meet with other parents each week was fantastic. It was good to see the actual faces of other people who had children with Down syndrome, proof that we weren’t the only ones. It helped to be able to compare stories and support one another.
I mainly envisioned a bleak future when I was first told Angie had Down syndrome. But with all the early intervention, and the acceptance of others, I now feel so positive about Angie’s future. It took me nearly two years before I felt Angie and I had a truly two-way relationship; not just me giving all the time. But it did happen and it was well worth the wait. Angie is a gorgeous girl, full of energy and life. She started school at five years old and is going for full days, just like any other child. She is learning to read and can write her name. After four months at school, Angie knows almost all the letters of the alphabet and can count to 10. She continues to love singing and music and enjoys dance classes with other girls her age. Angie also likes to be outside, jumping on the trampoline, swinging on the swing, riding her tricycle or scooter and splashing in muddy puddles with her gumboots. We live on a farm and Angie loves going on the tractor or motorbike with her dad. She can catch a ball and likes “swimming” in the school pool. (She is certainly a water baby.) Angie will grab our hand to show us what she wants, saying a word or two when needed. She is determined and knows her own mind. She isn’t toilet-trained yet but I know this will come. It is our next holiday’s big focus. I mainly envisioned a bleak future when I was first told Angie had Down syndrome. But with all the early intervention and the acceptance of others, I now feel so positive about Angie’s future. If you have just received news that your baby has Down syndrome, be aware that the first few years may be tough, but it gets easier. You form a bond with your child and life mostly gets back to normal. Special people come into your child’s life who help to make life that much richer. We had a wonderful preschool teacher who took time to listen, care and try new ways with Angie. She accepted Angie whole-heartedly and paved the way for the whole preschool to love Angie. 206 |
She never saw Angie as a burden, but a delight. These were her parting words on a card to Angie when she left preschool to go to school, “Dear Angie, you have brought me so much joy and I have learned so much from you. Keep in touch.” Last month, Angie escaped outside our house without an adult and merrily scaled the builder’s ladder leaning against the house roof. She climbed onto the roof and cheerily made her way up to where her dad was working on the chimney. What a fright I got when I realised she was missing and then saw where she was. What a blessing her dad had seen her and clasped her safely in his arms. She was all smiles and full of her adventure. It made me realise anew how fragile life can be and how we need to cherish every moment.
Christine Early has three children, David, John and Angie. She and her husband run a sheep and cropping farm in Canterbury, New Zealand. Christine helps out on the farm and relief teaches at her children’s nearby primary school.
Now I rejoice in the everyday achievements and realise that things could have been a lot worse.
Jackson 208 |
Life is a highway By Belinda Triptree
Isn’t it funny how life happens? One minute you’re driving down the highway of life with an itinerary – a plan of what you want to do and where you want to go. Then, out of nowhere, you find yourself on a detour, travelling down a different road – one you never expected to be on. But you keep driving and eventually discover that this road isn’t all that bad, just different. In the end, you realise it isn’t about the destination, it’s all about the journey. This is like our unexpected journey into the world of Down syndrome. Our journey began the evening Jackson was born. Following a trouble-free pregnancy, and two weeks early, he was born by caesarean at 10.45pm. The next day, the doctor came in and explained that due to some of Jackson’s features, they suspected he had Down syndrome and wanted our permission to do blood tests. Being in denial, I thought they had made a terrible mistake and told my husband, Andrew, that they didn’t know what they were talking about. I thought I knew better. Two days later the diagnosis was confirmed. What were we going to do now? This wasn’t supposed to happen to us. During the rest of our week in hospital, I managed to cope by focusing on Jackson, who became jaundiced and required feeding every two hours. I pretended that the “other matter” wasn’t happening. Jackson had to spend time under UV lights because of his jaundice. He looked so helpless and fragile. I felt so angry and useless. He was also diagnosed with a heart murmur. Things were going from bad to worse. I cried at night, wondering why this had happened, how we were going to handle it and how it would affect Lachlan, our then three-year-old son. By the time we went home, we were determined to move forward and do whatever it took to give Jackson everything he needed to live a happy and healthy life. One thing we knew for sure, very quickly, was that we loved him. Once home, we got on with the business of looking after our baby. I left it to Andrew to tell people “the news”. I didn’t want to have to deal with their feelings as I still wasn’t sure about my own. The first months passed by in a haze of coping with a new baby, a toddler and an endless round of appointments with doctors and specialists. Jackson’s heart murmur hadn’t healed by itself so he was scheduled for an operation at the Royal Children’s Hospital in Melbourne when he was four months old. It was a turning point for us. We spent two days at the hospital, with Jackson undergoing further testing on the first day and having his surgery on the second day. It was relatively minor heart surgery but it was heartwrenching for us to see our baby having to go through all this. It was also a huge wake-up call. In the cardiac ward, there were many other families going through far worse situations than ours. The other kids had all manner of problems – medical, physical and intellectual. Some had undergone
major open-heart surgery and had the scars to prove it. Andrew and I realised that what was happening to us wasn’t actually all that bad if you looked at the big picture. We vowed on the way home that we would stop feeling sorry for ourselves and just get on with it. And that’s what we did. Jackson recovered quickly and life settled down to some sort of routine. At six months of age, Jackson began attending an Early Intervention Program (EIP), where he received occupational therapy, speech therapy, music therapy and physiotherapy. It was confronting at first but needed to be done for Jackson’s sake. We met other families going through the same circumstances as us and others coping with far more severe and, in some cases, life-threatening disabilities. Again, I realised we weren’t that badly off. Jackson walked at 18 months and by the time he was two, he had outgrown the EIP. He needed more stimulation. We enrolled him in the Early Education Program (EEP) at Mornington Special Developmental School for two mornings a week. He also had grommets inserted in his ears to help his hearing. At the EEP, he started learning sign language and I learned that communication isn’t always about speech. We started toilet training, which turned into a long, arduous affair, taking about a year. At four years old, Jackson started attending the local mainstream kindergarten. He attended two sessions a week and spent the other three days at EEP. Jackson enjoyed his time at kinder. He participated in most of the activities and at the end-of-year concert he played Santa. I cried with joy at the realisation that he was doing what all the other kids his age were doing.
At the end-of-year concert Jackson played Santa. I cried with joy at the realisation that he was doing what all the other kids his age were doing. The following year, Jackson began his formal education, moving into the school-age program at Mornington Special Developmental School. He has been there ever since. At various times, we have considered integration into a mainstream school but decided against it. We felt that his lack of speech and habit of “wandering off” would make life difficult in a mainstream setting. Jackson has made great progress throughout his school years and now, at 10, is in the senior level of the school. He loves school, travelling there on the bus, spending time with friends and participating in all the activities on offer. He is always a star of the annual school concert. Jackson is much like any boy his age. He is cheeky and has a great sense of humour. He plays basketball, goes horse riding and loves football. He can play his own DVDs and use the computer, sometimes better than Mum and Dad. He dislikes eating his vegetables and taking a shower. His speech is a work in progress and is improving rapidly due to a fantastic speech therapist and lots of practice. He is happy and healthy. He brings joy to everyone around him. My anger and self-pity have long gone. Now I rejoice in the everyday achievements and realise that things could have been a lot worse. I can honestly say I am glad I have taken this journey. Without Jackson, we wouldn’t have met all the wonderful people we have. Often, when we are out and about, strangers will come up and tell us about someone they know with Down syndrome. We feel proud and privileged to be part of this great group. Belinda and Andrew Triptree have two sons, Lachlan and Jackson. They live in Somerville, on the Mornington Peninsula. On weekends the family enjoys watching Hawthorn play football, relaxing at home or going camping. 210 |
The pain I felt is now a mist that vanished in the sun. Itâ€™s given birth to days of joy. My new life has begun. From Ode to Amelia, by Lynn Dainton | Perth, Western Australia
Had I a magic wand, I could not dream of changing Sam, for then the magic he brings into a room would be lost.
Sam 212 |
Coming of age By Judith Kelly
I’ve gone outside for a quick break. The kitchen heat is stifling but the helping hands are plentiful and the conversation lively. The music has been pumping life into this glad gathering since early evening. It has an energy, a youth and a life of its own. Tonight the local bowls club is a sea of light and sound, sitting on a softly fragrant bed of manicured grass. As I turn back to go into the hall, it sits proud and appears afloat in the dark. I want to bottle the moment – to capture it in a snowdome forever. The evening has been punctuated with laughter, cheers and stories resulting in the same. The thrum of bass guitar belies a wild, teenage get-together, rather than a family function. The dance floor writhes and wriggles, crowded with young men and women on the edge of adult life, energetic in response to the music. Hope is in their hearts and lights are in their eyes. We’re cocooned in a welcoming place with people who simply accept. There is no benchmark for “cool”. Everyone is dressed to the nines. Tonight, it’s all good. It’s speech time. The music stops. There is a pregnant pause in the stream of conversation that had been rippling across the crowd. On the stage, by the blinking lights of the DJ console, stands a stout, handsome young man in a black shirt and jeans belted a little too snuggly with a dragon buckle. That’s my boy. He is resplendent in rub-on tats and his light brown hair is slick with sweat after dancing up a storm to Who Let the Dogs Out. He is waiting for the crowd to quieten, but is in no hurry; let this night go on. Sam’s face is almost split in half by a wide, proud grin. It’s a grin, able to make your heart stand still with the sheer joy shining behind it. No malice. No hidden agenda. No attempt to look anything but himself. The grin, the stance and his attire say loudly, “I’ve arrived. I’m Sam; this is my moment. I’ve come of age!” Glancing around at dear friends poised with a toast at the ready, I see misty eyes, knowing smiles and hearts full of pride. There is a palpable sense of privilege in attending the coming of age of a very special young man. Sam is not a typical teenager by any stretch of the imagination and had I a magic wand, I could not dream of changing him, for then the magic he brings into a room would be lost. He has Down syndrome and a host of health difficulties. The list is long but the end product is perfectly wonderful. The hall is hot, crowded and full of cheer. As we wait for quiet and a microphone, I strain to see the baby he was; small, floppy and listless. It surely can’t be this joyful young man before me? On the stage we stand shoulder to shoulder: my husband, daughter and youngest son, folding in around Sam. I manage to hold back a floodgate of tears and a feast of emotions that gnaw at my throat for expression – which one to choose?
We stand together as a family, a unit, and look out into a sea of friendship as deep as the ocean itself, thick with the life of memories, stories and hopes for a future just as rich as Sam’s past has been. Sam’s friends from Special Olympics stand tall at the front of the crowd. They beam with pride and anticipate words of wisdom from the birthday boy. It’s the stuff a mother’s dreams are made of. This isn’t quite the way I had imagined it would be, but I’m looking through rose-coloured glasses tonight. Sam’s arrival and diagnosis came as a jolt. He launched us into unknown territory, into friendships we would otherwise never have made or perhaps have chosen. Yet here we are – loved, supported and solid. We feel wealthy in the support of friends who stick with us through tough times and celebrate with us in the calm. Sam reminds us each day of the value of perseverance, gratitude and bravery in facing all a day brings forth. Down syndrome does not define who he is. He makes his own choices, though they may be small.
We feel wealthy in the support of friends who stick with us through tough times and celebrate with us in the calm. Sam takes charge and holds the proffered microphone as though he were born to it. He takes a deep breath and begins his 15 minutes of fame. He thanks everyone for coming, says he loves his presents and he loves the dinner and he loves the dancing and he loves the video of John Williamson that his uncle arranged and he loves the music and the DJs. I suspect he may also fancy the pretty girl who has filled his dance card so far this evening. Her eyes are full of stars looking up at Sam. That’s another issue we’ll learn to manage – seems Sam has already beaten us to Adolescent Relationship Management 101 and we need, once again, to fall in behind his lead. Sam’s new, manly voice, amplified by the speaker system, sounds unfamiliar to us with its confidence and joy. It bounces off the walls and fills the room with a timbre of a small brown bear. Sam’s voice comes from deep down – somewhere between his heart and his soul, I believe. His particular flair in storytelling and conversation is that he always states the obvious and truly revels in sharing the joy of the small things – the details so small and ordinary that the rest of us fail to see them pass us by. Perhaps Sam has the benefit of reacting slowly, so he notices looks, actions and people in his life as they float past like dust motes. The rest of us become so locked in and focused on what lies ahead, or what needs to be done, that we overlook the joy of the moment. Tonight, again, Sam grounds us, pulls us up short and reminds us that at the end of the day, the joy of life is in sharing it with those we love and with those who sometimes, unaccountably, love us, stand by us and urge us on; those who know our story and truly see who we are. His father, Damien, speaks with pride and emotion. He is now the father of two very different adults. Their choices and options are poles apart, but as people they are closer than ever. Damien looks around the room and relates some of his favourite stories, legends made famous in our closest circles by the birthday boy. There is the story about Sam giving away some of his mother’s jewellery to his high-school sweetheart and of him giving away his MP3 players; both of which have gone to good homes we hope. When chided for doing so, he responded with, “Mum, you share.” Sam’s generosity of spirit with the belongings of others is legendary. 214 |
There is also the story of how Sam knocked a neighbour’s car out of gear and rolled it down the drive. She had to chase it as Sam sat calmly, perched in the driver’s seat as the BMW rolled back and forth across the street, from curb to curb. There is another story about Sam putting his new baby brother into the wheelie bin while his mother sat helplessly on the toilet, aware only of the bin lid closing loudly. The tales continue to fill us with laughter as we remember Sam painting himself with white house paint, and drinking cans of hot beer from the garage at age 13. (Now that was a letter to the teacher I’ll never forget writing.) Another story of becoming locked in the school toilet, forcing the kindly but portly principal to scale the dividing partition… and on it goes. We laugh ’til we cry. When it’s my turn to talk, all the preparation I’ve done deserts me. I had wanted to talk about Sam’s arrival into the world and of the bleak, grey picture painted of his future that day by specialists and staff: “Don’t expect much” (I never know what to expect on any given day I assure you); “They are all so placid” (my boy never sat still for a moment and shone with the glow of mischief); “They all love their music” (well, that much is true tonight, though I could do without Black Betty blaring at 2am some mornings at home). If the professionals who saw him on day one could see him now, how differently they might map out a future. How differently they might look at that soft, flatfeatured, angelic baby face. Perhaps they might say something like, “You never know. He has the world at his feet.” Well-meaning visitors who made grand statements about God giving “special people special children” might just change that comment to, “He will take you places inside yourself you have never dreamed of and show you a side of yourself you could never have imagined laying claim to, for love evolves you.” I had wanted to speak of his achievements. It’s Sam I call when I can’t work the DVD player or Foxtel – for he understands how confusing the world can be and gently goes about helping me, with never a cross word or impatient sigh. It’s Sam I call when I see an amazing spider’s web or rainbow, for he expects wonder but is not overawed by the remarkable or different. It is Sam who notices when I am unwell, sad or excited, for he has a sense of people, an emotional compass that leads him to comfort people or to join in their joy.
It’s Sam I call when I see an amazing spider’s web or rainbow, for he expects wonder but is not overawed by the remarkable or different. Sam has made his mark in the world. He represented Queensland in soccer and swimming for Special Olympics. He completed a hospitality training course. He takes pride in being capable and in doing jobs around the house. He enjoys weightlifting and gym work without being bribed (unlike the rest of the family). Sam can write and read (he once wrote his name in silver spray paint one metre tall across the red brick wall of our house). He is able to use the phone (he once called the ambulance to the house when I had the flu) and makes my day with a cup of coffee in the morning (although he once added barbeque sauce and later told me it was Mexican coffee. I can still taste it.) I had planned to talk about these achievements and of his battles. I wanted to talk about how bravely he manages vision impairment, hearing impairment, intellectual impairment, heart problems and the long shadow of depression. Somehow, though, it doesn’t fit the jubilant mood tonight. Somehow it just doesn’t matter. It’s part of the weave in the tapestry he has become. It’s part of the rich hue of colour in the tapestry of his life.
I’m dumbstruck by the realisation that Sam is a young man beloved, well provided for, well known – there is nothing else of importance. He has his place in the world. He lives each day with no expectation of personal gratification or forward planning, but with an open heart and an open mind. He is eager to embrace whatever comes along. He lives for “now”. Eventually, all I can offer is a heartfelt two minutes. How proud I am of the young man you have become Sammy and the best is yet to be. I want more for you than the crumbs from the table of life that were described when you were born. Grab your life with both hands, enjoy it and continue to be glad of each day Sammy. You are our splash of yellow. You are our hero, our guru and our tour guide. What a ride. Hot tears of pride slide down my face. Sam’s friend, Martin, then takes centre stage. He, too, has Down syndrome. He, too, has forgotten to let it rule his options. He sparkles with energy and purity of intention. In the fog of emotion that engulfed our efforts at speechmaking, we have forgotten a time-honoured tradition the crowd relishes most. Martin hoists his glass aloft and shouts to the sky, “Three cheers for Sam. Hip hip …” It is music to our ears and there isn’t a dry eye in the place. To say now that the past 19 years have flown by is a gross understatement. It has been the journey of a lifetime so far, through uncharted territory. I’m clutching fast to the seat of my pants and hoping beyond hope for inspiration, energy, wings for my hopes and the resilience of a rubber ball. It’s been a joy, a pleasure, a privilege, an education. It’s been terrifying, humbling and gut-wrenching at the same time. It’s taken its toll, offered rewards and left an indelible mark on my family, my face and my heart. And I wouldn’t change a thing.
Judy Kelly lives in Queensland with her family and works as an inclusion support teacher in a primary school.
Then there are the well-meaning souls who make umbrella statements about children with Down syndrome. ‘They are all beautiful.’ ‘They are all good-natured.’ ‘They are all very placid and passive.’ ‘They are all wilful and stubborn.’ (Passive and wilful – that’s interesting!) In other words, they all have exactly the same personality. And there is the repeated question: ‘Has he got it badly?’ ‘For heaven’s sake, it’s not measles,’ I mutter under my breath. Glenys Collis | Proud grandmother of Okoe, a three-year-old boy with Down syndrome
Acknowledgements The compilation of Now I See, from start to finish, has at times seemed long and challenging. But mostly, and thankfully, it has been a beautiful witness to goodwill and generosity. Many friends, family members and acquaintances have unselfishly offered their skills, time, finances and emotions to help see this book through to fruition. Without this help, the making of Now I See would have been much harder and much longer. For you all, we are thankful. We are grateful, in particular, to the parents who have made such a significant contribution to this book and, hopefully, to our readers by sharing their stories. Their experiences are woven with the soaring joys, near crippling sorrows and everyday ordinariness of life. For some, these stories were hard to tell, requiring bravery in the face of their fears. But for all, these stories have been an act of love; the love these parents have for their children with Down syndrome, indeed all their children. For that, we thank you for your generosity of spirit and desire to make a difference through your stories â€“ to provide insight for the wider community and to comfort and encourage those mothers and fathers who may have just begun this journey. We appreciate, also, those people who generously gave of their time and finances to support this book. Margaret Grant, who soon after losing her beloved husband, raised the main portion of funding for this book by instigating and organising two fundraising functions. Thank you to everyone who attended these functions and gave of their money and goodwill. There is Frank Costa, businessman and former Geelong Football Club president, who contributed financially early on, and gave us a strong indicator of the ways this book could help people not directly touched by Down syndrome. And thank you Michelle Somerville and Sarah Klein, two amazing yet (as they would say) ordinary mothers, who have contributed their stories to the book and who, at different stages, have taken their own initiative in raising funds. There have also been those people who have freely given of their precious time and particular skills: Lynsey Blakston, for his diligent proofing and editing advice; Peter McDougall, Judy Baulch and Jean Leary for their accurate and thorough proof-reading; and Karin Blakston, for all her help with looking after (Angelaâ€™s) children so there was time to work on the book. We appreciate Andrea Dunstan, our designer, and Justin Ridler, our main photographer, whose work has surpassed our expectations for the appearance of the book. Thank you for your specialised skills, goodwill and belief in the book. And thank you to the particular families who willingly gave their time to attend our photo-shoot. (It was a beautiful day because of your trust and support.) Thank you also to Cathy Satre who photographed our beautiful cover shots. Thank you to our husbands, Joel and Gordon, who gave so much emotional support and time to ensure that we were able to work on the book. And lastly, thank you to our gorgeous sons, Gabe and Clem. Without you both, there wouldnâ€™t be a reason for us to create this book. We love you in ways beyond measure. Angela Blakston and Carolyn McDiarmid
About the bookâ€™s creators Angela Blakston is a journalist and mother of three children, Ezra, Gabriel and Alberta. She has more than 20 yearsâ€™ writing and editing experience in newspapers overseas and in Australia, and most recently worked at The Age in Melbourne for 13 years. She lives with her husband, Joel, and children in Geelong, Victoria.
Carolyn McDiarmid is a midwife, who also works with families who have children with a disability. She lives in Geelong, Victoria, with her husband, Gordon, and four sons, Clancy, Fergus, Clement and Sidney. She wishes that this book had been available when she was pregnant with Clem and hopes that it will make a difference to others.
Published on Mar 2, 2014