Page 1

I was ashamed of myself, and rightly so. I pulled myself together, showered and headed with purpose to the nursery. I can tell you with all honesty that I have loved her ardently ever since. It was a full twenty-four hours before I was allowed to hold my beautiful, darling girl and my heart is awash with emotion even today 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, having spent five days in the Neonatal Intensive Care Unit 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 and four months of age she was diagnosed with Juvenile Arthritis, which was a dreadfully sad occasion for me. When I examine my feelings around that time I think 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 as well. 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.

Daisy’s story Of difference, acceptance and love words & image Kate Vernon Kate is a Registered Nurse currently working on Nurse Bank for Eastern Palliative Care in Melbourne. Her partner Richard is a builder and has his own busy business. Together they have three beautiful girls, Charli, six, Daisy, four and Matilda, two. They have a lovely little Jack Russell terrier called Joey and a little bunny called Snuggles (who is anything but snuggly!)

We were not prepared for the news that we received when Daisy was born. ‘We think your daughter may have Down Syndrome.’ And, bang—just like that, the world as I had known it had changed, imploded. I was thrust into the middle of a cyclone. How could this be? Surely I would have known that there was something wrong. A gut instinct during pregnancy, perhaps? This just 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 that Richard had been crying. I allowed him time to grieve and reassured him it’d be okay. Then he seemed to pull himself together and then it was my turn. I cried and cried and 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? I had felt euphoric the moment after she was born. Compared with my first delivery I couldn’t believe she was out and with such little effort. I

had been lying on the bed in a pure, unadulterated state of bliss when Richard returned from the Special Care Nursery. I couldn’t have imagined a happier time than right at that moment. It seemed to be only moments after hearing those fateful words that the questions started in my head. 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 two year old…how was this going to affect her? She wouldn’t have the adult relationship with her sister that I had imagined. Then, worse news. A nurse came into the delivery suite and alerted us to the fact that she wasn’t doing so well. She was having trouble maintaining her oxygen saturation, her platelets were dangerously low and she was entering perilous territory for risk of brain haemorrhage. And then bang, again. It was over. My maternal instincts kicked in and I was away. My baby needed me and here I was wallowing in self pity.

My main fears for Daisy have been and still remain 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 sciences 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 very early on, it would be unwise to base my hopes and aspirations for Daisy on how I see adults with Down Syndrome (DS) today. Thirty, forty and fifty years ago when a baby was born with DS their parents were encouraged to give up on them, 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 let alone their potential. We now know better. We know that people with DS can and do achieve extraordinary things. More importantly perhaps, we also know that people with DS achieve ordinary things.

tists are valuable members of our society, however, we must realise that just because they discover that something can be done, does not necessarily mean that it should be done. I am continuously amazed at how well Daisy has been received in our society. If she can’t elicit a smile out of the coldest, stoniest heart then I feel it must indeed be an impossible task. What warmth one of her smiles can generate! Ours is not a sad story but rather one of joy. It was very soon after meeting 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 and has the innate ability to bring out the very best in people. I have become particularly aware of people who look and act differently to those of the mainstream and it’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! They have been sent directly from the most important pool of angels available. They are here for a purpose and an extremely vital purpose at that. They’re here to warm the hearts and minds of anyone privileged enough to be touched by them. If you’re reading this and you have been blessed enough to have been chosen by one of these angels to be their guardian and protector, then congratulations. You are privileged indeed. And if you’re reading this and you know somebody with DS then congratulations to you, too. You have also been blessed. And for those of you reading this who have had no contact with a person with DS, then do yourself a favour and go and learn for yourself just how our world needs these people to keep us grounded and to teach us such invaluable human lessons as treating each other with warmth and kindness. My heart aches when I allow myself to feel just how lucky we became on May 28th, 2006. Thank heavens for you, Daisy.    

I feel that the most important factor about people with special needs, like DS, 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. Scien-

page

page

34

35

Daisy's story  

The story of a family and their journey with Down's Syndrome.

Read more
Read more
Similar to
Popular now
Just for you