Anniversaries following a young sudden cardiac death.

Anniversaries Anniversaries following a young sudden cardiac death

help and support to @CRY_UK CardiacRiskintheYoung www.c-r-y.org.uk

Editor Alison Cox MBE, CRY Founder Sub-Editors Lily Burke, CRY Bereavement Support Programme Manager Nat Jenkins, CRY Communications and Publications Manager Produced by Cardiac Risk in the Young (CRY) Unit 1140B The Axis Centre, Cleeve Road, Leatherhead, Surrey KT22 7RD Phone: 01737 363222 Email: cry@c-r-y.org.uk Web: www.c-r-y.org.uk First edition - 2016

Grieving Grieving is not something that can fit in to a specific slot.

Sometimes there can be a great deal of anger about what has happened.

Sometimes trying to cope with the feelings of other family members can exacerbate the grief you are trying to come to terms with.

Sometimes it is difficult to understand and accept that men and women can grieve in very different ways.

Sometimes it is easy to forget that children need special attention.

At this time their needs can so easily be overlooked.

Sometimes family members literally wonder if they are going mad with grief and are fearful of sharing such thoughts with others they love.

Sometimes there is a terror of letting family members out of sight and immediate control, in case the same thing happens again.

Sometimes there is the knowledge that the condition that has been diagnosed may be inherited, with all the serious and ongoing implications.

Sometimes you will feel the need to talk things through with a professional counsellor and sometimes you might crave to talk to another person who has suffered in similar circumstances to your own.

Steph Hunter

My husband died suddenly at 32 playing rugby, and then the eldest of our 3 children died age 15, playing rugby like his Dad. Family and friends helped me hugely but with 3 infant children I had little time to reflect. Although I greatly missed my husband I don’t think I grieved for him properly until my son died. I realised this as our family spoke about them both, because we found that the same genetic condition had killed them. The stream of Anniversaries repeatedly remind us of how much more profound and sad they are than any other day of the year. We go for a walk along the beach, light candles and look after each other as a family, but find that receiving a card or text, or seeing an extra basket of flowers placed on the grave, makes such a difference as they are always loving reminders that we are not alone in our grief.

Family and friends have raised over £500,000 to establish CRY’s Centre for Cardiac Pathology. If a cause of death is “unascertained” and the deceased was aged 35 or under, the centre provides the free, fast-track diagnostic service which is so crucial to identify these genetic conditions. © Cardiac Risk in the Young

Foreword As a nation I have always felt that we have specialised in anniversaries, understanding their true significance, which reminds us all of the importance of marking an event of magnitude.

If someone inextricably close to you suddenly dies, anniversaries are something that I have learnt most of our bereaved families and friends cannot, indeed do not, ever want to escape from. Their suffering is immense but is not easy to share. Their feelings grind and jangle with the demands of every day life as they struggle to come to terms with the inexplicable tragedy that threatens to take over their present – and future too.

Anniversaries provide a framework within which their recollections of time spent together can be harboured. They create a predictability which confirms that the person who dies will not be forgotten. It holds the promise that their great loss will always be remembered.

There is, at first, no softness in their memories. They are a brutal reminder of what is missing from their lives, reinforced by those who remember too. Life is intransigent and they have no option but to cope. However when family and friends can show they have not forgotten the impact is massive, reinforcing their craving that their loss will always be shared.

Creating traditions for an anniversary, especially those that can be inclusive, provides stability. It can reduce the excoriating anxiety that people will move on, or become immune to the sensitivities of their own private suffering. A harrowing burden that the bereaved will carry throughout their lives.

Some of these days of remembrance remain private, known only to themselves. Others are days earmarked for sharing, and can lead to increasing confidence around friends and family that loved the person now missing from their lives, and who have their own needs to share their own experiences.

Those bereaved that can slowly, cautiously, move the agony of their mourning after a young sudden cardiac death towards developing annual anniversary celebrations, have created a bedrock for their grieving. They open up an opportunity for all those that loved the young person who has died to join them. This can anchor the management of their catastrophic grief, and relieve their harrowing nightmares.

Anniversaries crystallise memories. They become a focal point, offering precious protected time to reflect on cherished moments plucked from their brief lives spent together. Moments that are needed to serve a lifetime.

Alison Cox MBE, CRY Founder © Cardiac Risk in the Young

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Grief Booklets A Sibling’s Grief The stars of this booklet on Sibling Grief are the young authors of these 10 stories. Their courage in articulating their feelings about the impact on themselves of the inexplicable, instant, sudden cardiac death of their apparently fit and healthy brother or sister has not been published before. After such a catastrophic event siblings are often sidelined, shielding their parents from their own torment whilst trying to fill for them the gap left by the dead child. Dealing with the loneliness of isolation, and others not understanding the deep personal issues the death exposes within the immediate family group, is compounded by their fear of making things worse if they made their voice heard.

These stories express how they coped with: the catastrophic effect that reverberated through their family; how the expectation of having to take control feels; the terror of wondering who might be next; their grief being dismissed; finding themselves invisible; having friends too young to know how to cope with the impact of the death of a young person; the legacy of loss of a relationship still maturing; witnessing the agony of their parents suffering; wondering if mum and/or dad would have preferred them to have been the one who died. This booklet was inspired by their desire to help other affected siblings feel less alone and perhaps contribute to family and friends’ improved understanding of the complex issues that affected them, and which they have so readily shared in this booklet - in spite of their tears.

A Father’s Grief

Rich’s tribute to his son

Young Sudden Cardiac Death: A Father’s Grief

This booklet has been compiled to help other Dads feel less alone. After such a catastrophic event the expectation is often on “the head of the family” to manage those closest, whilst their own searing grief is sidelined. Endeavouring to relieve their wife and children from further suffering, they focus on trying to be useful and the practical challenges – expressing how they coped with: planning the funeral; worrying what their dead son/daughter would have wanted; trying to get it right; the finality of the burial. Meanwhile, they are dealing with the guilt of believing they failed to protect their dead child; the distressing implosion of the family dynamic; and siblings struggling to settle into a rearranged order.

Mood swings, vulnerability, turmoil, disbelief, loss of control and the lurching from hope to despair. This booklet bears witness to the brutality of a grief experienced over a decade ago, through to the rawness of a Dad’s feelings after the recent death of his son. Their courage in revisiting the agonising impact of their tragedy has been inspired by their commitment to help other fathers affected.

A Partner’s Grief The young sudden cardiac death of a partner is pulverising.

The present, with lifeless options, offers no respite. The future, carefully crafted through a maturing relationship, has been destroyed in an instant. Unlike the memories from birth that exist for a child or sibling, partners can often only reach into their recent past to relive excruciatingly precious moments that must sustain a lifetime of grieving. The pain may soften in time, but will never be extinguished.

Moving forward into a future built for two seems a betrayal of the love shared. Every step embedded with risk.

Endeavouring to again find the independence that had been discarded like a loose unwanted spare skin, becomes part of the overwhelming nightmare each moment represents. Flashbacks haunt dreams and the future lies cold and uninviting; reflecting becomes a passport to despair.

Losing a partner to young sudden cardiac death rewrites the expectation of life for the one who is left behind. Nothing is safe. Life can turn in an instant, leaving a trail of destruction and desolation. Scrutinising the cherished past, with their back to the solitary future awaiting them. Reluctant to turn and face the prospect of the bleak life ahead and agony of what might have been. Reminded, by their empty bed each night, that they are now alone.

A Mother’s Grief Jenny and Adam both died of SADS

Young Sudden Cardiac Death: A Mother’s Grief

The agony that obliterates every corner of consciousness in the moment she gets the news. And after – the silence, numbness, barren despair. The grief of a mother dealing with the inexplicable sudden death of an apparently fit and healthy child, with no time to say goodbye and a coroner’s verdict of “natural causes” to cope with, establishes young sudden cardiac death at the cutting edge of grief. To then learn that her child was carrying a genetic undiagnosed heart condition – leaving other children at risk until they have been screened – and that death is instant with little chance of resuscitation, leaves her not only dealing with her tragedy but also living with the terror that they too could be affected.

The impact on a mother of her child’s death is well documented. It is now properly recognised that her child cannot be “replaced” by mother having another baby; “time does NOT heal” nor will mother one day “move on.” It is my hope that this booklet will not only help affected mothers, but also others to better understand why Mum has such a massive battle to reinvent herself. Why her endeavours to “reconstruct” her life must first work past the “broken woman” she has become. Family members all grieve differently and in her battle to help she can be swamped by mourning the intolerable loss that frequently, and vividly, encapsulates her with feelings so raw as to defy survival.

Managing anniversaries, by a bereaved Dad Our son died in mid-October 2008 just after starting primary school. We have now passed the seventh anniversary of that event. It’s always noticeable that the build up really affects us, like a dreadful black cloud, with my mood and varying state of depression worse than usual. I can’t put my finger on why until I realise it is late September, coming up on “that time of year”, and my subconscious seems to know it even before I have consciously thought about it. That said, when the actual anniversary day comes, it’s rarely as bad as feared, due to the heavy time in the run-up.

October for us is therefore something of an emotional write off. Just the word gives me a twinge. And whenever I see reference to the date of his death in writing anywhere, it is like a blow. I usually can’t carry on reading, in case it triggers flashbacks of that night.

A few people often send emails, texts or cards and sometimes flowers, but we rarely receive visitors. I guess they want us to have some space, peace and quiet. That is appreciated by us, although we do sometimes wish people would offer to visit his grave, either with us or sometime during the day. Although we are not very conversational it’s helpful to know you are not suffering alone.

I always take the day off work, and we visit his grave to tidy it up and take fresh flowers.

Other than that, we just take it easy on ourselves. The anniversary is, to me, just something to get through intact. Part of me is reluctant to mark or acknowledge it, as it was such a horrible event. But then it would be disrespectful not to, to just ignore the day.

However, I do think that as a date it is no sadder or more significant than the day before, a week before, or the day following. Surely every day is equally sad; so why should we make it worse for ourselves by letting the anniversary sink us any lower?

His birthday is in early February, not long after “surviving” Christmas. He would be 12 this year. This is a bittersweet time; on the one hand we want to focus on something positive – on him, his birth, that he was part of our lives. A returning theme for us is speculating what he would be like now; how tall he would be, what he would look like, what he would enjoy doing in his spare time. But we do not dwell on that for long as it quickly becomes too painful.

We always have a birthday cake with candles, and our daughter, who is now 7, blows them out. Others who have lost older children – teens, 20s and so on – would probably not consider doing that, but for us it always feels like a lovely and suitable thing to do. We feel as if he is in the room with us, watching with amusement, although I don’t recall us ever having sung happy birthday, as that would be a little weird.

So the birthdays to us are far less an emotional time than the anniversaries of his death, and we intend that to be so. That does get easier as each year goes by and we seem to control, to some degree, how much we allow it to affect us.

I think it is important to clarify to friends and family whether or not you would like them to participate in some way, and to what extent. Otherwise they may assume it is better to stay out of your way on those days to let you “grieve in private”, when actually that may only make matters worse.

6 © Cardiac Risk in the Young

Managing anniversaries, by a bereaved Dad After the sudden death of our fit and healthy 24-year-old daughter it was clear to me very quickly that anniversaries were going to be difficult and distressing times.

My daughter died on March 2nd and after repatriation of her body and the post-mortem in the UK, we were given a funeral date of March 19th. This was my son's 16th birthday!

I could not allow his birthday to clash with my daughter’s funeral so we asked to move, the funeral by one day. My rationale for this was that we would remember my daughter’s birthday and the date she died, but hopefully the date of her funeral would not be so poignant. My son was brave and understanding and subsequently this was a good decision.

When CRY asked me to contribute to this “Anniversaries” booklet my immediate thoughts sprang to my daughter’s birthday and the anniversary of her death, but there are also so many other special times to consider which might be less conspicuous but are still anniversaries. I found that any of them can suddenly hit right out of the blue. These for me are the most difficult ones to cope with.

I have always thought of Father’s Day as a bit of an afterthought, a bit of a “bolt-on” to Mother’s Day for the commercial guys to make another few bob. I told my kids not to bother with-it but they would always get me a card and a little gift. I can tell you that the first Father’s Day following our loss with that one card “missing” literally floored me for days. This was my first recognition that “there will always be” a card missing.

My daughter actually died on Mothering Sunday so this day will never again be the same to my wife. I have to say that for her to pass away on Mothering Sunday felt extra cruel.

I have learnt that the best way to deal with these anniversaries and special dates is to confront them, to plan for them, and to prepare for them being tough. Organising in advance things that I hope will distract me, reassures me that I have carefully considered the options available so feel safer that I will find some way through. This can be sinking myself into a busy day of work, gardening, going somewhere nice for the day, or just spending time with special friends and family who understand I might be struggling.

Sometimes I feel like I just want to be on my own for the day and do not want to bother with anything or anyone else. I find though this is somehow a little easier if I have planned to do it and it just doesn’t “end up” being the case.

It has been my experience since losing our daughter that pretty much every day there are “triggers” that can just suddenly make me emotional, whether it be a tune on the radio, a place, a smell, a sound, a sudden realisation that this situation is real and not just some horrible dream.

I think as time has moved on I have learned to live alongside these feelings and can now also see some of these anniversaries as an opportunity to celebrate. I am able to look back on some of the good times we had on these anniversaries, remembering the lovely places where we celebrated them together as a family.

We will always hugely miss her but I have learned to appreciate the joy of having her as well as feeling the sadness of her loss. © Cardiac Risk in the Young 7

Managing anniversaries, by a bereaved Mum Anniversaries are still very difficult 6 years on. I would like to say it has got easier, but each year, especially on birthdays, my thoughts are around what might (and should) have been. What would he be doing now? Be married? Have a family like most of his friends? Working where and at what?

He died on a Sunday and for months they felt like an anniversary. I would look at the clock and relive events of that awful day.

Initially it was so painful that I needed to talk to other bereaved mothers expressing how I felt. It reassured me tremendously to know they had survived.

The first anniversary of his death was surreal. I had planned a day walking with my daughter and close friends – something we had done with his friends after his death. As it worked out that day coincided with when his headstone was erected. Because I was away for the day, his friends visited his grave and were sending me photographs. It still didn’t seem real.

After the walk, we all had a meal together which included a toast to him. Later I would remind myself that I had survived this first anniversary and, however difficult, knew I would survive the ones to come.

Subsequently I have tried several different ways of spending the day to learn what feels comfortable, depending on how I am. One year we had a get-together at home, but it felt too much like a “party” and as it wasn’t something to celebrate, I have never repeated it.

For the last 2 years his friends have invited us to their get-together on his anniversary.

This is bitter sweet. Whilst it’s lovely that they remember, it underlines the fact that he is missing... and he was a huge part of all of our lives. Seeing them growing up, moving on, highlights our loss. I feel we are suspended in time as far as his life is concerned and he will always remain ageless.

We visit the cemetery on all anniversaries. Although he is no longer with us, I still feel a need to acknowledge him and instead of presents, take a wreath. This breaks my heart.

Birthdays follow a similar pattern. Having tried everything from going away for the day, arranging CRY charity events, and recently choosing to spend it alone... know that nothing can ease the pain. It is, however, becoming more manageable. My very supportive family and friends understand, and continue to listen when I need to talk – something I’ve found vital to my wellbeing.

Whatever the anniversary I try and have something positive planned to look forward to when it’s over. This gives me something to focus on and aim for. I still cannot believe I have got this far, but I have and will continue to do so.

I am a great believer in survival being inherent and have surprised myself with the strength I have found... though I’m not sure where it has come from!

8 © Cardiac Risk in the Young

Managing anniversaries, by a bereaved Mum Anniversaries; “The first ones are the hardest”, I was told by a well-meaning person after our son died suddenly on July 21st 2007. Well they were wrong, each one is hard but for different reasons.

Birthdays, these are now low key affairs, it is difficult to celebrate getting older when our son will never have that luxury.

Our grandsons’ birthdays are of course celebrated, quite rightly so, but it is bitter sweet knowing another year has passed and they are no longer the small children he left behind but are now teenagers into their music and technology that he would have loved.

He would be so proud of them both.

On our eldest son’s birthday we do try and make it a special day for him. Always the quieter of the two, he has never liked a fuss, but we will go out for the day, somewhere of his choosing, and then finish the day with a pub meal. It is I think so important for other siblings to know that it is alright for them to enjoy their birthday and not feel guilty about it.

Then there is our son’s birthday. This is the day he came into our lives, and we were so blessed to have him albiet for a short time. This is how we now look upon this day. 3 years ago on what would have been his 40th birthday we climbed a favourite hill of his and released balloons with messages that we had written on them. There is something quite soothing watching a balloon drift slowly up and up into the sky. We will visit where his ashes are interred then go for a quite meal together.

Mother’s Day and Father’s Day. These have always been regarded as a “retailers’ bonanza” in our house, but I do so miss the bouquet of flowers that he always sent. On this day we will go out for a nice long walk away from all the hype.

The anniversary of his death. This is the hardest day of all. Our son died the day after his 35th birthday so we have the 2 days together. This is the day that I re-live in my mind everything that happened the day he died. I still find it hard to believe how it could happen when we only spoke to him the night before to wish him “happy birthday”. On this day we will go out either for a long walk or to a National Trust property, I cannot bear to be in the house that day.

There are of course other anniversaries. June is the month of his wedding anniversary and memories of what a magical day that was are tinged with sadness.

September is our wedding anniversary, he always remembered and was the one who always reminded our other son of it. In two years time it will be our golden wedding anniversary and yes we will celebrate it, he would so want us to.

So yes the first anniversaries were very hard and they still are but over the years we have learnt to live alongside them. The pain of losing a child you just cannot put into words but I am so glad that we had him in our lives and I like to think that he is somehow helping us to go on living.

© Cardiac Risk in the Young 9

Managing anniversaries, by a bereaved Mum It is soon the 10th anniversary since my son died, and looking back I can only describe it as being a horrible, confusing, painful blur. Five weeks later he would have been 17, and had his first driving lesson. Instead we visited the cemetery shattered and in the depths of despair. His friends came and organised a “birthday” get together, including his younger brother, which they have done every year since and will continue to do for evermore. Always a key anniversary for us all.

We are a very close family and celebrated all our birthdays together. That first year we still got together for birthdays but the happiness was missing, because of the gaping hole left in our family by our son not being with us. But we muddled on as best we could, wanting to protect each other.

Trying to celebrate Mother’s Day when one of my children had died was terrible. But my other child needs me now more than ever, so I’ve got to be a “better” mother to try and help him deal with the devastation and realisation of becoming my “only” child! I attempted to ease his pain by keeping smiling though my heart was breaking.

His first birthday without his big brother left him crying inconsolably, wanting him to be there to celebrate with him. My husband and I could not bear birthday cards with my dead son’s name missing but tried to make these days as bearable as possible for the rest of the family.

He had been an avid cricketer, and the first day of the cricket season was monumentally sad for us and for the rest of his cricketing friends. We stayed with friends that weekend as we couldn’t face turning up for the first game of the season and not seeing him proudly striding out on the pitch with his beaming smile, ready to take on the opposition.

The approach of his first anniversary filled me with dread. How was I supposed to acknowledge the death of my lovely son? I just wanted to run away and pretend it hadn’t and wasn’t happening. I learnt though that the lead-up to the anniversary was actually worse than the day itself. We arranged a get together at the cricket club where he and his friends had spent so many happy hours. Around 120 people joined us and the night turned out to be “not too bad”. This is something that we have continued to do. Although a lot of his friends are now out of the area, they all come, and because they book the next day off work have nicknamed this as his bank holiday!

I realise now almost 10 years on that our anniversaries with families and friends are far more light-hearted and filled with fun and laughter and my son is talked about with ease.

This is a sharp contrast to the early years when everybody was frightened of saying the wrong thing for fear of upsetting each other. Now we can all mention his name, still with sadness, but also with a smile as we recall many memories of his fun-loving and addictive personality.

It isn’t just anniversaries that are hard to deal with as every get-together reminds us he isn’t there. Our family was ripped apart when he died, and I have accepted that my heart will never mend. However we have gradually readjusted and adapted to a new life without him, knowing he is always alongside, whatever we are doing.

10 © Cardiac Risk in the Young

Managing anniversaries, by a bereaved Mum After my son died I dreaded both the first anniversary of his death and his birthday. As his birthday approached my heart ached at the prospect of getting through a day that he should be celebrating. The family got together for a meal in his favourite restaurant, this included all the people he loved. We raised our glasses to him and shared the funny memories of previous birthdays. At the end of the evening we let balloons off and sang happy birthday. I was exhausted for days and felt as though I wasn’t going to be able to face living without my beautiful son. I learned so much from that first birthday.

I now take a week off work following anniversaries to reflect on my son’s life, the joy of his birth and the blessing he truly was to us for those 19 years. It has become a day of celebration not sorrow, a day our lives became richer from his existence in this world. He was a spirit that was full of energy and adventure so we celebrate it with his brothers, sister, nieces and nephews, aunts, uncles and cousins and have gone ice skating, to dry ski slopes, football Zorbing and this year go-karting is booked.

Every year we laugh and talk about our beautiful boy, especially the reaction he would have to seeing his mum and aunts stuck in a football Zorb upside down, or falling over from ice skating, the laughter from my family is so beautiful I can almost hear him laughing too.

We let off balloons and sing happy birthday. This year another CRY mum suggested that each family member attached a funny written thought of him to their balloon. I smile when my nephews say with excitement in their voices “Aunty, what are we doing for his birthday this year?” The week that follows I feel my sorrow and try to be alone recollecting memories of his birth, his first words, steps and the milestones that meant so much to me. Time to connect with my son.

The anniversary of his death is a day I still find incredibly difficult with the run-up always being the hardest part. I struggle through these weeks feeling all the sadness of my loss.

On his anniversary I get a flower arrangement done of a Portsmouth football crest, which was the team he followed loyally throughout his short life, and I visit his grave.

In the first years my husband and other three sons came too but as time passed I learnt that my family cope in different ways and going to his grave on this day is too painful for them to bear. I have learned that trying to avoid my pain causes more pain, so have an acceptance now that the day my son left this life will never stop hurting. The memories of that devastating day will always be part of my being and now I try to carry my grief, rather than drag it. At times I have to put it down to regain my footing.

Family come to the house, my husband makes one of his famous curries, and we just spend time together in the unity of our loss. I take a week off work to give myself a while to stabilise.

My son will continue to teach me, in life and death, and has made me a better human being. The sorrow I feel is the reflection of the deep love I have for him which is the testament to his memory. © Cardiac Risk in the Young 11

Managing anniversaries, by a bereaved Mum My son died, age 30, three and half years ago leaving a beautiful wife and twin boys of 20 months. What do anniversaries mean to me now? How do I cope? I am not sure yet that I really do.

Each dreaded passing day, week and month from then seemed to only mean that I was leaving him further behind. The joys and laughter of those years, slipping into a bleak painful future without him. All gone. There was now none of his future to share, none of his dreams to watch come true.

However together with his dear wife and family, who had only known him for such a very short time, we have celebrated and remembered him for what he was. In fact now anniversaries of special dates, his birthday, his wedding anniversary, the boy’s birthdays, Father’s Day and the day of his death have become opportunities for us to talk about him so we can continue to include his memory in our lives.

Both his wife and I find the time leading up to a special day is much harder than the day itself. So I have come to relish the opportunity to be with family and friends, which gives me permission to laugh, grieve, cry or just reflect. I like to hear how much everyone misses him and love the re-telling of old stories. I know and understand that some people do not know what to say, and find it too painful to be a part of this. However I take comfort, perhaps selfishly, to hear how much others miss him and also find it painful and sad. This reassures me that I am not alone with my agony. At these times I like to light a candle in the Abbey and in watching it glow I can almost feel his warmth. I have found solace in my attempts at poetry or just writing my thoughts and never fail to include his sister, who loved him so very dearly, within these reflections.

There is a bench in memory of him near his family home which is often the focus for our anniversaries. It is where we can gather or be alone come rain or shine and some of the “happenings” at our bench have helped us lighten our burden of grief. This year proved no exception. On “Daddy’s Birthday,” it was decided by the twins and I that we would send up helium balloons in his memory and they thought Daddy would like these to come with a “choc roll” attached to the balloons. When these, predictably, proved they could not fly, the twins decided it would be best to eat the choc rolls first so that the balloons would then be free to fly and – after all – they were sure that Daddy would be glad and not mind at all.

Over Christmas, when a horrible gnawing loneliness really sets in, I wanted to go for a quiet time with my brother to reflect, and just be still. But our peaceful sojourn was destroyed when he tripped in a nearby ditch, and then just rolled on and on down the hill.

The serenity of the moment I had hoped for was destroyed as we cried and laughed and remembered why we were there. But it brought me a sense of peace and perspective and I felt my son smiled and enjoyed it too.

It reinforced how much I always want to remember the warmth of my son around me. It helps enormously to share our anniversaries with people who loved him so much. And if a smile along the way surprises us, to take it and hold it and dwell on the joy, fun and laughter he brought to us all.

12 © Cardiac Risk in the Young

Managing anniversaries, by a bereaved Mum “Anniversaries are just dates on the calendar,” says my younger son, who misses his brother every single day. But to me the anniversaries since my son’s death are dates redolent with meaning and memories. The first year was the worst, but I know now that the anticipation is almost always worse than the day itself. And as the years have passed we have marked the different anniversaries in different ways – to celebrate his life and grieve his loss.

His anniversaries come in quick succession in those grey months at the start of the year; the date when I last saw him alive, the date of his death and the date of his birthday. It can feel quite overwhelming – like a long dark tunnel; but I try to take it as it comes, one date at a time, until I can see the light at the end.

I last saw him on Sunday January 17th with his girlfriend, waving back at me at the station before the train hid him from my view, after his last weekend at home. I want so much to retain that snapshot moment, and to remember him that way – happy and smiling. As I write this, that anniversary is very near; in my mind’s eye I can see my son, as I last saw him on that day.

He died in February. Over the years since his death I have painfully learned how to survive that most dreadful of anniversaries. This is the day when I just wallow in the grief of losing him. I don’t want company, or distractions, though friends and family make contact to say that they are thinking of us. I devote the day to my beloved boy; this is his time – and my time for him.

I submerge myself in memories, and regrets, and open up the treasure box sent to me after his death. Cards, letters, photos and video clips of him having fun, which I had never seen before. Colleagues created a folder of international tributes from people he had worked with. Friends filled a memorial book with photos and words, sharing memories, their love and sorrow. The hours pass while I go through the box and spend the day with my son. While my heart is breaking, I find some comfort knowing that his short life was such a full one. And so I get through the day.

We do not have a grave to visit. He was a naval architect, a sailor, and the sea was his spiritual home. On the first anniversary of his death, his sailing partner from uni took us out in his boat to where he had loved to sail, to scatter his ashes. The sun broke through the clouds at just the right moment on a grey day, and it felt as if he was smiling on us.

We set a small wicker boat filled with flowers onto the water and watched it sail away until it turned over and sank beneath the waves. Every year, on the anniversary of his death, I remember that day too, when he sailed away from us.

He died just short of his 30th birthday and each year since his death his friends have arranged a get together at a riverside pub in London to celebrate his life. Family mingle with his friends from school, uni, work; people who loved him, remember him, and want to share stories about his life. Sometimes there are tears, but this is such a happy event and I am so grateful to his friends for inviting us along. This is the day when it feels as if there is a light at the end of the tunnel. This is the anniversary that celebrates the life of my wonderful son, who I miss more than words can say. © Cardiac Risk in the Young 13

Managing anniversaries, by a bereaved Mum The birth of each of my children far outweighed any previous pleasure and emotion I had ever had – as was watching them grow and develop, secretly anticipating their future which was my future too. The sudden severing and consequent aching void was unbearable. I wondered if I could survive such pain? Birthday cards bearing their names stared at me from shelves. I was drawn to presents that I yearned to buy for them.

In early grief, time became the enemy with empty hollow days to face – especially anniversaries. Christmas, Easter, birthdays, family celebrations… painful moments taught me not to dine in restaurants during peak family events like Mother’s Day. I’ve subsequently learnt that grief also has a life span and that feelings do evolve and change, given time. It takes courage to live through anniversaries and I found discovering the little ways that help me through these times has varied or changed over the years.

In my grief I made an analogy between “snakes” and “ladders”. It took many years to understand that the emotional rollercoaster of “sliding down a snake” will be miraculously followed by a ladder into a more comfortable space. The effort and willingness to climb out of the darkness also changed. But the anniversary of my children’s deaths remains the hardest to face. The sense of ‘build up’ for weeks before made it impossible, during my working life, to work on these days so I learnt to take annual leave during any dates that I needed space and time for. I didn’t explain the reason for my absence to colleagues, wanting to avoid the interaction that I found hard to deal with.

My children’s friends remain faithful to their memories, taking time to get together to let off balloons and share a meal with us. I realise how lucky I am and draw strength and comfort from them, even though this is tinged with the sadness of seeing their lives taking shape in ways that I had hoped for my own children.

The time in-between remains difficult and with every anniversary and each passing year I try to avoid things that cause added stress and fatigue, now finding space for tears and rest. During this time I burn a special candle within a beautiful candle holder that I keep especially for these days, placed next to specially chosen photographs. The central part of my day is to place spring flowers on the grave. I feel that attending the grave helps to provide a semblance of structure and purpose and a sense of “doing” something to honour my children.

I realise that we have to each find our own path and have found talking to other bereaved parents very helpful. The suggestion, for example, to buy a new Christmas decoration for each child to be placed on the tree. I eagerly search through countless shops for such a purchase which has over time become a satisfying task in my life.

I value the friends who unfailingly remember the anniversary dates that are hard to get through and feel that such acts of kindness have been the mainstay of my journey. Just a few lines received by text to remember my children are uplifting and help to steady weary faltering footsteps. I try to confront the changes that time will inevitably bring. Some of these changes have enabled me to find new paths and I know that I am far from alone on my journey. My children are with me every day and I give thanks for the utter joy of having shared the lives of such beautiful souls.

14 © Cardiac Risk in the Young

Managing anniversaries, by a bereaved Mum My daughter died 9 years ago and I found the first of all the anniversaries was especially hard because I couldn’t help but keep thinking back to “this time last year” and how different it had been and how happy we all were, with no inkling of what was to come.

Each anniversary was one that I found an ordeal that had to be endured.

I faced these anniversaries by making a plan for the day and keeping busy. Being busy has been one of my main coping strategies and has served me well.

The day my daughter died was my birthday. To help me deal with this I now always keep this as a quiet day as I cannot bear to mark it. I have changed the date of my birthday to the day before and keep it low key with nothing special arranged.

The first birthday after she died would have been her 21st and she had such great plans for it. So when it came round we decided to give her friends some money to go out for a meal together and raise a glass to her. Her young friends were simply amazing. I felt so proud of them and the way they coped. Her grave was a mass of flowers, cards and balloons. Since then on her birthday I go to the cemetery on my own, with her birthday card and two gin and tonics and sit and have a drink (or two!) with her, and talk just as we used to. In September my daughter would have been 30. I will make a plan for the day and try to do something special with friends and family, filling the day with things that she would have liked.

My husband finds Father’s Day the worst day and likes to be on his own and quiet. This in itself upsets him especially as he is aware that our son must find that difficult to deal with. On Mother’s Day I try and remember all the good times and the happy memories.

I still feel that I am a mother of two as I found being her mum was such a privilege and joy and I feel so blessed to have had such a lovely daughter. I can look back and find comfort in the memories but find looking forward and thinking about what she should be doing far too painful so I don’t go there.

I miss my beautiful daughter every day and there is always an empty place at our table.

Anniversaries are really just another sombre day without her. Perhaps they mean more to other people, who still text or phone us on certain anniversaries, and do not think of her every day as we do.

For me anniversaries are no different really from any other day and I have learned not to fear or dread them. I just make a plan, and endeavour to keep busy so that there is not too much time dwell on what happened and what might have been – if it had not.

Family events are different now. Special birthdays, weddings, new arrivals, parties and get togethers are all happy occasions but my daughter’s absence seems to be highlighted at these times. She is never forgotten. We talk about her often and somehow, because we are reflecting frequently, feel safe that she is in our hearts and minds all the time. We always raise a glass whenever the opportunity arises and know that she is still with us and part of the family – but in a different way. © Cardiac Risk in the Young 15

Managing anniversaries, by a bereaved Mum The lead-up to a birthday or anniversary is always a difficult time. It sits in the back of your consciousness. Counting down the weeks and days can be all-consuming. My son died on a bank holiday and so the date changes from year to year. Regardless of the date, his anniversary will always be that Bank Holiday Monday.

Several months before the first anniversary a close friend suggested performing an evening of “Songs from the shows” with a small operatic society she belonged to, as a way of remembrance and the proceeds would go to CRY. At the time I felt I couldn’t possibly cope with all the arrangements but a small group of neighbours and friends promised help and support. They were true to their word and it was held at our local town hall. It did give me something to focus on. The evening was sold out and very moving for everyone.

I now smile and remember it as a wonderful tribute but inevitably at the time there was no escape from that heart-wrenching pain of the loss of my much loved and precious son.

Anniversaries that have followed are always so painful that I tend to leave deciding what to do until the last few days but I always do something. Usually it is a long walk along the river, remembering, reflecting and laying flowers at the spot where he died. I meet up and share this with close family.

I have often done a car boot sale for CRY as a bank holiday means a good turnout, so put up posters and give out literature to raise awareness as well as raising money! I now understand that this is who and how I am at this time.

I embrace the heartache of a love that will never die or fade away. From the beginning I decided to mark and celebrate his Birthday doing something memorable, that will stay with me always. These usually include other members of the family and take planning!

We have had several very special walks, along the coast, the New Forest, up a mountain where we shouted “Happy Birthday” from the top of a waterfall and one year shouting it from the top of a ski lift. Picnics in his favourite spot, Chinese takeaways, homemade pizza, letting off balloons, lighting a candle and remembering him in a church memorial book. As his Mom, celebrating his birthday and his life is very important to me.

Annual anniversaries such as my own birthday and in particular Mother’s Day are still, after some years, the very worst, especially as my daughter and grandchildren live abroad. My feelings on both occasions can only be described as bereft.

Usually I take flowers to his grave, knowing in the circle of life it should be the other way round. Tears fall, those wonderful drops of sorrow and happiness of life, loss and love. I know too that I am not alone. Somewhere close another mother feels the pain and cries the tears. I understand.

Sometime ago I read a plaque on a park bench which I would like to share with you.

“They whom we love and lose and are no longer in the place they were, they are always where we are.”

16 © Cardiac Risk in the Young

Managing anniversaries, by a bereaved Mum There are so many “first anniversaries” to think of; the day she died, her funeral, her first birthday without her, the first Christmas, the new school year starting, the first family holiday, her sister’s and brother’s first birthdays without her. I was fearful she would be forgotten, and somehow would seem never to have been a part of all that had happened as she had no future. In the early days my desolation knew no bounds and each day was a struggle.

She died the day before our silver wedding anniversary. I greatly love my husband but we just don’t celebrate our wedding anniversary anymore. I fear the cards arriving as they remind me of the many messages of condolence. I can’t bear having cut flowers in the house as the smell reminds me of that first week when our whole world was turned upside down.

We had three children with June birthdays. How could we celebrate two and mourn the third? So there were birthday cakes for two and balloons and flowers for one. The first birthday after she died was her 18th. Her friends wanted to celebrate her life so we had an open house and anyone who came released a pink helium balloon with their personal message attached. This has become a family tradition.

In the run-up to the anniversary of my daughter’s death I get very emotional and cry more easily. I think from the fear and anticipation of the date rather than the day itself.

In the beginning I took time off work but as the years have passed now find I can carry on my normal day, and if I’m rostered to work, I go. I order a nice sparkly wreath and my husband and I take it to the cemetery together, taking solace in our wonderful memories.

The first anniversary of her death we were still struggling to make sense of her loss but wanted to mark it in some way and so the fundraising nights for CRY started. It was more of a family party and an excuse to keep saying her name. We wanted to share photographs of her growing up, reinforcing that she was here, and did live. I wanted her acknowledged and found talking about her helped so much. We try to host a fundraiser every couple of years, especially to mark ‘big’ anniversaries. It makes it easier to mark these occasions if we include her, as by hosting an event we can honour her memory by raising money to screen other young people and help to fund research into the silent killer that took my youngest child.

Her friends remembered her through social media and we loved the memorial page made for her on Bebo with her initials laid out in candles, and included the music we had for her funeral. There were photographs I had never seen and I visited this site a lot in the early days. Facebook is the new media of choice for her friends who still remember her on birthdays and anniversaries which I find very comforting.

As the years have passed we have new anniversaries to celebrate. Our family has increased in some ways but there have been some deaths too so we have new anniversaries to cope with. However none tears me apart as does the anniversary of my daughter’s death. It is just not right that a parent buries a child. The pain of that day will never be forgotten. It has not lessened but it has dulled, and now on each anniversary it is easier to remember the special times we shared and not worry about the future. © Cardiac Risk in the Young 17

Managing anniversaries, by a bereaved Mum Anniversaries – the marking of another year passed, another year got through, the reminder that you do go on and that you have no option. Last year I wrote in my diary “10 years since my son died”, and this year I’ve written “his anniversary – 11 years”. I sometimes wonder how I will feel when he has been gone for longer than he lived, when I will have lived longer without him than I lived with him.

The first significant date we hit that year when we were wiped sideways by the death of our son and brother was his birthday. When my son died I remember realising suddenly, shockingly, that he was still a teenager. I was amazed – I thought of him as a grown man on the brink of adulthood and here we were on his twentieth birthday. He was a teenager no longer but he was no longer here either...

His dad and I spent that June day together, as we had the day he was born. We went down to the Pits, a family picnic spot for four generations. We had spent birthdays there many times in the rough and tumble of an outing with a group of small boys. That first year it was a beautiful day and we sat together silently on the picnic “plateaux” where my children had played, where I had played, where my father and his sisters had played, where my grandmother and her siblings had played, and remembered and grieved.

The girls’ birthdays came around and our diminished, “one missing” family celebrated quietly. My birthday that year followed a “big” birthday the year before. My memories of him from that party were so strong: pictures in my mind and feelings of pride in my son.

How could I have been so happy only five months before he died? Why didn’t I know that it was the last time I would celebrate my birthday with him?

And then it was a year since the day he died. We’d got through Christmas and his father’s birthday and then I began a countdown of memories and regrets from those weeks a year before, which lead to that day at the end of February. Did we say goodbye properly as he returned to university? There were emails about the test match – taking place that year, as this, in South Africa – and our weekly phone calls – the last time we spoke, a Sunday evening six days before he died. I remember the snow that fell that week as I struggled back from choir on my bike the Monday five days before. It felt unbearable and recalling it now still brings tears.

The four of us went to his grave – less than a year since we had put him into it yet it felt like an eternity. The day itself wasn’t as bad as the anticipation of it – the weeks before were hard and remain hard even after a decade. It helped to come home and find cards and flowers from people who remembered and had taken the trouble to say that they remembered what had happened a year before. And it helps still, a decade later, to have the day of his death acknowledged. We bring back a sprig of the prunus that grows near his grave for my mother – it’s usually in bud and the flowers open in the warm of the house.

Why should a day in the year, a date in the calendar, have such power? But it does and seems to sharpen memory; to focus hurt and sadness; to allow a space to remember and mourn.

18 © Cardiac Risk in the Young

Managing anniversaries, by a bereaved Mum When it comes to the anniversary of my son’s death, or birthday, I spend it alone, quietly with my husband, or daughter and family. I often go walking, sit on the beach, write a few words. Have some “my son and me” time.

The first birthday anniversary we went to our remote beach chalet where we had spent so much time with our children. The first anniversary of his death, I spent an hour alone in a cathedral, lit a candle, tears running down my cheeks. I could not speak to the member of the clergy who tried to console me, seeing my distress. Afterwards I met my husband, my daughter and her family for lunch. I was with people who knew how I was feeling and were feeling the same.

Christmas is hard. The year before my son died, he came home for his sister’s wedding.

Who could have known that this was to be our last Christmas together. Such a strong, handsome, beautiful, young man.

The “silent” anniversaries are the ones only I, or a select few, know about. The last time we visited him on holiday, the last meal together, the last game of golf, the last hug.

Mostly they start on Christmas Eve and go through January. These five weeks, when my son was often out of breath, saying he was so cold he had to warm up in the Jacuzzi, of the last time we spoke (on my birthday), of his death, of getting on the plane, seeing him in the morgue the first time, second time, and then the last time. The anniversary of making the funeral arrangements in another country, having a service in another country, of flying home and the anniversaries of making all those arrangements again: the church service in this country, the crematorium service the next day. The list goes on and on. My silent anniversaries when nobody knows of my agony.

Each is very personal and only a few know of my suffering. As I write this I am on holiday with friends. I don’t tell them that three years ago, we were abroad at our son’s funeral.

I won’t tell them tomorrow that three years ago we were flying home from that country, following his body which had been flown home earlier. They are very good friends, helping us through a particularly hard month who we enjoy being with and help us immensely.

I use Facebook to mark his birthday and the anniversary of his death with a few lines, and take great comfort from his friends comments showing they still care. It feels like a link to him, and that he is still with us. The positive attributes are wonderful.

It is now three years since we lost our son and we are experiencing these anniversaries as I write this. It is the dreaded month of January, following the “so-called” celebrations of Christmas. We have no choice but to cope. As they approach I become selfish, avoid stress, am alone with my thoughts surrounded by people I feel safe with, who know how to help me. Somehow, very gradually, it is getting slightly easier to bear.

I have learnt to be kind to myself. Not afraid to keep talking about my child and bring him into conversations. I allow time for my private thoughts.

Bless you my boy – I don’t need an anniversary to think of you for you are with me all the time. Love Mum xxx © Cardiac Risk in the Young 19

Managing anniversaries, by a bereaved Mum Anniversaries mark the passing of time and this is something that frightened me in the early days after losing my son. There was a fear that I was moving further away from the time he was with me and that at some point I may not be able to feel the closeness of him.

During the first year, each new week, each new month and even the changing seasons would highlight that time was moving on.

The weeks leading up to the anniversary were as hard as the actual anniversary day.

Without any prompting my mind would wander back to the previous year. I can recall the events leading up to my son’s death very clearly – they are imprinted on my mind and always will be. He died at Easter time, so when spring came and the shops were full of Easter provisions I automatically thought “this is what the world was like the last time my son was with me”.

We all know how to celebrate special anniversaries and birthdays – we buy cards and wish everyone well and hope that the day is filled with joy and happiness, but when faced with the anniversary of my child’s death it was difficult to know what to do. In some respects I didn’t need the day to remember my son but I did want to mark it in some special way. On visiting my son’s grave earlier in the day and seeing the flowers that had been laid there I felt comforted to know that others had also remembered him.

I remember standing in the middle of my local supermarket wondering how everyone could go about their usual routines as though it was just a normal day. At this point I had a strong urge to shout out “Stop! Don’t you know that my son died a year ago today.” I didn’t, of course, but the emotion I was feeling was so intense. It was hard to imagine that I could no longer say “Last year my son…”

In the evening I arranged a get together for my son’s friends and for anyone else who wished to join us. It was lovely to share memories, in which I found comfort, and there was laughter. During the evening we held hands, formed a circle and I let a silver balloon into the night sky. There was silence as we watched it get smaller and smaller until it eventually disappeared. A simple symbolic act but very emotional.

For the second anniversary we held a ball where friends gathered in his memory and raised funds for CRY. It was good to do something positive.

I wasn’t prepared for the effect the 10th anniversary had on me. It was a huge milestone – a decade – where had the years gone? Again, it highlighted how long it had been since I was with my son and the urge to see him became stronger during this year. we marked this “milestone anniversary” with friends, both his and mine, with a ceilidh. My fear was, and still is, that he should be forgotten.

My son died on Easter Monday and was buried the day before his birthday so that time of year is possibly harder to deal with than the actual date of his anniversary. It is difficult to think about his death and birth in the same week – two anniversaries that are poles apart.

To me it is important to set time aside for reflection and remembering and in recent years I have tried to focus on the joy he brought and the love I have for him.

20 © Cardiac Risk in the Young

Managing anniversaries, by a bereaved Partner I found all anniversaries painful after my husband died but just in different ways. There always seemed to be something; his birthday, my birthday, our son’s birthday, our wedding anniversary, the anniversary of his death, the list goes on and in the early days it almost felt like the anniversaries seemed to be a constant wall of pain when I spent time building up to the day only to get past it and have to think about the next one.

Birthdays were hard because I couldn’t believe that he would not see any more milestone birthdays and almost felt wrong celebrating mine as the years passed. This coupled with the fact that some family and friends wanted to mark the day with a celebration and others didn’t know what to do, so all seemed to be looking to me for an answer, which I found tricky to deal with.

Our son’s birthday was extremely upsetting and difficult to handle if I’m honest, I was just so upset for them both as they were missing out on sharing so much and as he got older it only served to remind me of all those things he was never going to see as his son grew up.

We only celebrated one wedding annniversary together so I felt cheated, angry and extremely sad when this day came round. I kept reliving it, imagining what we would be doing together, what we would have achieved together as a couple and how we would have grown as a family. I found the first anniversary of his death extremely draining emotionally. I reflected how far I had come, and how I had made it through the other important dates. I kept going back to the day it happened and reliving everything over and over in my head trying to make sense of the sheer injustice of it all and asking myself constantly: Why him? Why us? Could I have done anything differently? Should I have noticed anything?

I found the anticipation of “the day” more stressful and upsetting than the day itself. I would spend a couple of weeks beforehand panicking about it, getting in a state about how awful it was going to be, and deciding how to mark the occasion. Once the day materialised it was a relief to know I just had to get through it and then it would be over for another year.

I did find it important in the early days to make plans as it felt better having some structure.

I ended up getting into a bit of a ritual, and always visited the cemetery on those days, let balloons off with our son on his dad’s birthday or Father’s Day with personal messages written on them. On our wedding anniversary I spent time looking at our wedding photos and managed to eventually join friends on his birthday to raise a glass to him, happy in the knowledge that he would never be forgotten. None of this was easy as it often brought pain back to the surface.

Finding a way to manage your grief and get through those days with the minimum amount of stress and upset is not easy but what is important is to tackle it your way, whatever that is, and never feel pressure to behave in a specific way; even planning to be alone I found liberating on occasion and it allowed me the space and time to grieve. As with everything in bereavement there are no rights or wrongs, it is simply too personal.

© Cardiac Risk in the Young 21

Managing anniversaries, by a bereaved Sibling Although each year presents a number of reminder days which seem to stand out more than other days for various reasons, and which change every year, the two main dates which have become most significant to me, year after year, are my brother’s birthday and the anniversary of his death.

Anniversaries are always hard. Although I get used to having them every year and am slowly learning how to cope better, every year is so obviously another year without my brother, and so much longer since I last saw him, that it really hurts. I often find it hard to believe that another year has gone by without him here; when I haven’t been able to see him, or hear him, or give him a hug.

I find the birthday anniversary the hardest by far, mainly because our birthdays are on consecutive days.

I only ever remember sharing my birthday time with my brother, and I really loved that.

In fact, the last birthday we had together, we had a combined birthday party with all of his and my friends. We had so much fun and I was so proud of him. So my birthday just doesn’t feel the same now I can’t share it with him. It feels empty and I’m not overly interested in it so I prefer to just mark his day with my family instead.

The date of my brother’s death is different again. If I see or hear the date anywhere, I still shudder. It is a date which brings only the most awful memories. That doesn’t mean that day is terrible each year, but the date itself is just one I don’t like and would prefer if it didn’t exist!

I don’t have a set way of dealing with either anniversary, or a defined activity I do each year, but for both, it feels very important to me to mark them appropriately. Not celebrate, but mark.

I like to do that by doing something different (even if just for a small part of the day) and often something I knew my brother really enjoyed. I try to spend time with my family or we at least contact each other through the day and tell each other what we have done to remember it. We usually end up smiling at the memory that creates.

To me, it doesn’t matter what we do, as long as we are all acknowledging the day in some way and thinking of my brother as we do it. In fact one of the things which makes me smile the most is when someone in the family has his favourite meal for dinner – it brings such a clear memory of him on so many occasions and is something we all associate with him.

No day goes by without me thinking of him. Every day, every event is another when he isn’t here and I am reminded that I cannot share it with him. But those two anniversaries just seem to stand out more painfully than the others. I find they are more difficult to cope with.

Yet as much as the dates bring sadness, they also bring an opportunity for me to reflect and smile and enjoy reminding myself of all the happiness we have shared.

22 © Cardiac Risk in the Young

About CRY’s Bereavement Support Programme CRY was founded in 1995 to help families affected by a young sudden cardiac death (YSCD) and young people suddenly diagnosed with a life-threatening condition.

Sudden death syndrome is an umbrella term used to describe the many different causes of cardiac arrest in young people (aged 35 and under). These include cardiomyopathies, coronary artery anomalies, ion channelopathies (such as long QT or Brugada syndrome), myocarditis, Marfan syndrome and Wolff-Parkinson-White syndrome (WPW). The exact prevalence for many of these conditions is still not known. Most are due to hereditary disorders. 80% of young sudden cardiac deaths have no prior symptoms.

CRY’s Bereavement Support Programme has been developed to help people with their grief following the unaccountable sudden death from one of these conditions of an apparently fit and healthy young child, sibling, partner, relative or friend.

CRY provides emotional support through a network of volunteers who have themselves suffered the sudden death of a child, sibling or partner in this way. These volunteers have achieved British Association of Counselling (BAC) accreditation with Skills and Theory certification, following two years’ training, so that they can help others come to terms with their tragedies.

Hundreds of people have contacted CRY wondering if there are others that they could talk to who have suffered similarly. No matter how much professional support is offered (either medical or therapeutic), sometimes just talking to someone who has been through such an experience helps the most. CRY offers telephone support, with our trained bereavement supporters, which is arranged by contacting the CRY office (see below).

We also have National Bereavement Support Days which are held for people who would like to meet others in the same position and understand more about how to cope with the sudden loss of a young person from an undiagnosed heart condition.

People travel from all over the country to attend these days and further information including dates is available at www.c-r-y.org.uk/bereavement-support-days.

These events are specifically for mums, dads, siblings and partners who have lost a young (35 and under) person due to a sudden cardiac death. Each of these days addresses a different aspect of grief. The tragedy affects all family members but each person will feel their loss in a different way.

Our largest annual event is CRY’s Heart of London Bridges Walk. The walk is for bereaved families and supporters to raise awareness and funds for CRY, whilst remembering the young people who have died from sudden death syndrome.

For more information about the CRY Bereavement Support Programme please call CRY’s Bereavement Support Programme Manager on 01737 363222, or email bereavementsupport@c-r-y.org.uk

We would like to thank the CRY Bereavement Supporters who have contributed to this booklet.

© Cardiac Risk in the Young 23

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