Christmas following a young sudden cardiac death by Cardiac Risk in the Young

Christmas

following a young sudden cardiac death

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

Editor Alison Cox MBE, CRY Founder and Chief Executive 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 - 2015

Foreword Preparing for the internationally celebrated Christian festival of Christmas is a prospect that haunts every family having to cope with the tragedy of a sudden cardiac death of a fit and healthy young person. Finding ways to confront and deal with this massive public event requires enormous courage. Finding the motivation to survive it is a huge challenge for most of our bereaved families Whether father, mother, sibling, partner or loving friend it produces a maelstrom of emotions that can dominate the last quarter of every year - and for the rest of their lives. Seasonal music, traditions, celebrations and decorations lead up to a crescendo of excitement that explodes into Christmas Eve, Christmas Day and carries over into the following week as the New Year approaches. It is unforgiving in its dominance of everyday conversation, the media, attempts to go shopping, and the inevitable social commitments that crowd the calendar at this time of year. There is no escaping the memories of past Christmases “before” their lives were destroyed by their tragedy. They flood back invading every moment. The pendulum of mood swings endured becomes an unpredictable hazard of life “after” and this is particularly exacerbated at this time of year. Of peace and tranquillity, widely held frontline aspirations during this period, there is none for an affected family. Any experience of, or suggestion how to is sought to “get through” this excruciatingly painful time. My hope is that this booklet of stories written by some of CRY’s Bereavement Supporters, will help provide you with how others have developed coping strategies which are intensely personal and which they have so willingly shared. If it makes anything you have to manage even just the tiniest bit easier, by digging into and exposing their own “grief control” tactics, they will be well rewarded. Risking opening up their own Pandora’s Box of carefully crafted ways to address the agony of Christmas will then not have been in vain. Alison Cox MBE Caroline Gard: CRY Representative and for 10 years a Bereavement Supporter:

As Christmas is such a family time, the impact of loss is still and always will be heightened, because everything seems to be about family and being together. Nearly 20 years later and we still set time aside to think about Andy and to remember our happy times as we celebrate with the newer family members. I save some of Christmas Day to go somewhere quiet to have my own thoughts and memories. Years pass, memories remain but pain eases and happy times can return even at Christmas. © Cardiac Risk in the Young

Grief Booklets 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 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. © Cardiac Risk in the Young

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.

A bereaved Dad’s feelings at Christmas The time leading up to Christmas can be very difficult - from the happy TV advertisements where everyone is sitting around the Christmas table tucking into the perfect dinner, to simple things like the emotional music you hear playing in most shops from September onwards. But if you accept and ‘Prepare’ then a fairly normal lead up to Christmas is possible. However, have I bolted out of a shop when a certain tune is playing? Of course I have! It helps to only go out with a supportive friend or relative who knows you are finding things difficult. Explain there are some things and some people you cannot cope with! People can be very un-Christian while preparing for Christmas! On Christmas Eve and Christmas Day I find that friends and family worry about me being alone, feeling they should do everything possible to make Christmas a lovely time. This is impossible, but I have found that being in company helps. If you do not feel up to it, be honest enough to say so and spend the time how you see fit. I call this being kind to yourself. It is a most important time to be kind to yourself. I do what I want to do, with the people I want to do it with. Accepting there will be an ‘empty chair’ around the dinner table (‘Preparation’) can make this just a little easier to deal with. My eldest son likes to spend Christmas in his own house with his own family to avoid the annual discussion about whose parents he should be with. Spending a couple of hours around his house on Christmas morning with our beautiful grandchildren is the highlight of our Christmas and it gives me the impetus to see that life does go on and Christmas can still be wonderful. At the risk of sounding cynical, I admit to taking solace in the fact that some (unaffected by a bereavement) are having a thoroughly miserable time and not everyone is enjoying themselves! On Boxing Day we tend to hold an open day for friends and family to pop in whenever suits them, which gives us the opportunity to meet up informally and is something to look forward to after Christmas. I think the week between Christmas and New Year can be very difficult with the media seemingly focussed on meaningless advertisements, and people fighting for bargains in the shops. New Year’s Eve is the start of another year with our someone special ‘missing’. It is the event I ‘Prepare’ most for - as in, ‘Prepare’ for nothing. I cannot bring myself to celebrate whilst preparing for another year of loss. I think of those revellers who will suffer, as we have, at some time during the next year, unaware of the fragility of life. I try to use New Year’s Eve as my force to continue supporting and helping people along the way. I don’t celebrate, but do wish others happiness. © Cardiac Risk in the Young 5

A bereaved Dad’s feelings at Christmas The lead up to up to Christmas was organised by my wife and son - who loved giving presents, decorating the home and making his Christmas present wish list. My job was to try to get the lights to work. As a Dad it is now a very frustrating, sad and lonely time, seeing many happy and excited families shopping, work colleagues sharing their Christmas arrangements and coping with the question “What are you doing for Christmas?”. I ask myself how they could have forgotten what happened to us, but then why should they remember? I’m always thinking back to the many great times we had which have now gone in a flash. I feel jealous seeing other families waiting expectantly for the big day and as I watch them, I think how very lucky they are to have what they have and I think “I used to be like that.” A ‘low’ creeps in making me feel different from the others; as if I’m on the outside looking in and no-one I see is aware of what’s happened or what I’m going through. TV advertising is difficult as you just cannot escape it, but over time I have learnt to manage this. It’s taken a while but each year I get a little better. On Christmas Day my son’s routine was to place his best present at the top of the stairs, and we were instructed to alert Father Christmas to this. The day started being woken noisily by him at 5am reminding us that it was Christmas Day. Dealing with the silence now is such a dramatic shock and one I am still struggling to adjust to. We try to keep the day as normal as possible with no decorations, gifts, or celebration. Just being there for each other. I would feel guilty doing otherwise without my son. It’s an emotional time for me, questioning again and again “why us?”, “why him?” However, each year that passes I manage the situation better and although I will never get over it I’m gradually learning to accept what’s happened. I can now reflect back to the good memories and times which make me smile, and always buy a Beano annual at Christmas, as he loved them so much. When Christmas is finished it is a relief. I don’t feel sad it’s over, it just another year that I’ve achieved. We don’t celebrate New Year’s Eve and try to treat it also as just another day. I do stay up to see in the New Year though and always make a wish (“Happy New Year son”) in the garden, that I know won’t come true. The noise of fireworks starting, car horns sounding and hearing parties all going on around me reminds me that I once did enjoy that too. I think that maybe over time I will do so again. New Year’s Day is treated as an ordinary day. I am aware how I have improved and believe there comes a point that your body and mind can properly acknowledge what’s happened. This doesn’t mean I have forgotten, nor shall ever forget; but I am more positive now after all these years and know I will pull through. 6 © Cardiac Risk in the Young

A bereaved Dad’s feelings at Christmas Christmas, the year my son died, was a non-event. We just didn’t do it. We were recluses, stayed at home, had no visitors round, no tree, no decorations, kept the curtains closed, ate as normal and I think went to bed by 9pm. It was just another dire day, amongst a stream of dire days, during those first few months; a living hell every day. What were we going to do? Wear silly hats? Pull crackers? He went in mid-October. He was our only child, although my wife was 7 months’ pregnant at the time. Our beautiful daughter was born three days after that first Christmas, so it was a very odd few days anyway, preparing for the birth whilst grieving a death. One thing does come back, though; wanting to fulfil the promise I made to buy his presents. I didn’t wrap them, just left them in his empty room and showed him what I had bought. I said “no thanks” to the shop assistant who asked if I wanted batteries, thinking these toys won’t need them. They won’t be played with. The following year Christmas was cancelled again; our daughter was about to turn one, so we celebrated her birthday only. No tree, no decorations, a few cards, no meal. It was not just about ‘the absent chair’, with him not being there. It was more general than that; just a robust refusal, which we shared, to have anything to do with that time of year, regardless of any religious aspects. New Year’s Eve, for years after, was a deliberately early night. I think it still is. The sound of others having fun (or pretending to), being loud and late, was something we did not want to see or hear. Still in the deep end of our misery we found we could not handle fun, frivolity in ourselves or others - even laughter got on my nerves (and still does). To the extent that we could, we shut the world out. So dealing with Christmas and the New Year was not really an issue; we just did not take part in it. I recall at year 3 - our life post his death is often expressed by us in terms of the year after his death - we finally went up to stay with my family for the Christmas period. This was mainly for our daughter’s benefit, to be around some wider family, but in all honesty the self-imposed exile was becoming awful; the deliberateness of our attempts to avoid it just made a miserable period even worse. Did I tolerate it more with family around? Not really. I was glum and quiet. I just wanted it to end. I was going through the motions. I was aware that it was no fun for my wider family either, although I recognised the effort made for us, that they felt for us, but I would rather have been at home. My advice? Don’t listen to me, don’t follow my example. Do what you feel you are able to do, what is appropriate if you have kids; but I don’t think anyone can tell you or expect you to take part in a ‘fun’ season.

A bereaved Mum’s feelings at Christmas The thought of our first Christmas filled me with sheer dread and made me feel sick to the pit of my stomach. I didn’t know how, but knew that somehow I’d got to get through it. It hit me like a steam train just after the October half term when I went into a shop and everywhere was like Santa’s grotto. I fled from the shop and was violently sick and decided not to go shopping again until after Christmas. I shopped for food online and my lovely family organised my present shopping. I’d always been like “Mrs Christmas”, decorating our house with trees, lights, and baubles. Our home had always been a happy and lively place to enjoy Christmas. But now I didn’t want to be at home for Christmas. How could we wake up on Christmas morning without my eldest son there? So we decided to spend it with our family and then my younger son could wake up on Christmas morning with his cousins, who he could share everything with. We hoped that this would ease his pain and make everything a bit easier for him to cope. A few weeks before Christmas he asked if we were “allowed” to put up the tree and if he was “allowed” to make a Christmas wish list! Athough my heart was breaking and I couldn’t bear the thought of it, I reassured him. Friends and family offered help but it was something I had to do myself, so I hung all the decorations, recalling the memories attached to many of them, crying constantly as I did it; but there were no Christmas carols playing in the background or noisy excitement from my boys as in years gone by. I awoke early on Christmas morning, had a good cry and then put on my brave face to take on the day ahead. We opened our presents together and it was nice to watch my young son having fun with his cousins. My husband and I just went through the motions but I think we did a good job of appearing normal and managed to join in the festivities even though we really just wanted to lock ourselves away. I dreaded New Year’s Eve, knowing we had to do something different to try and get through it, so we went off to the races with the family. The day passed quickly and by the evening we were all shattered so just went to bed, and when we awoke it was the New Year! Another year had arrived, but still all the pain, heartache and yearning for our lovely son and brother who we had lost so tragically. Subsequent years have got easier to deal with, although the pain of spending Christmas without him is still as bad - we just get stronger at dealing with it. The whole family have fun recalling my son’s notorious funny antics and how he would amuse us when they did their Christmas shows, treasure hunts, etc. Although he isn’t with us, we still miss him terribly but remember him with a smile - he is talked about constantly and still a part of every minute of all our Christmases. Happy Christmas son – love and miss you! xxxx

8 © Cardiac Risk in the Young

A bereaved Mum’s feelings at Christmas The first Christmas was a blur. We were still in shock and celebrating was the last thing I wanted to do. I couldn’t envisage looking forward to, or enjoying, another Christmas ever again and knew I had to change the way we dealt with the festive period. My family and friends were a massive support and never protested - just going along with anything I decided on. Since my son died I have not sent Christmas cards. This is because I cannot write ‘Happy Christmas’ anymore. I have always found Christmas cards a chore that seemed a waste of money, so now I give that money to CRY. It felt alien to omit his name from gift tags but I was aware that people might find it odd to include it, so started putting his initial with a heart around it. That way, he still stayed a part of us and is always in our hearts. Putting up the tree was another struggle, but one that has eased as the years have gone by. We buy ornaments to commemorate him, such as a glass bauble with ‘son’ on it. We also take an arrangement to the cemetery and place a small carefully chosen tree on his grave. I feel very sad that he is no longer with us, and still need to include him. If I don’t, for me, it feels as if I am not acknowledging that he existed. I find that the build up to the actual day is the worst part, so try and soften the blow a little by planning something to look forward to when it’s all over. That first year we went to Northumberland trying to ‘get away from it all’. Christmas Day used to be celebrated at my parents’ house, but after his death I needed to go to my sister’s instead, so he did not feel so painfully absent. Christmases since have been spent at our home. Doing things that are completely different helps me to cope better and gives me something to aim for. One year we decided to treat Christmas Day as an ordinary day without celebration, but acknowledged it on Boxing Day. Coping with losing my son was extremely difficult all year round, but family events seemed to highlight the fact that someone was missing, making the occasion more intolerable. I can’t cancel this period because we are a close family separated by our locations and Christmas is when we can get together. We always raise our glasses and toast my son though. It makes me feel that he is still part of us, which of course he always will be. New Year has been difficult too... it is about new beginnings, and again, a traditional time for celebration. But we never leave him out, always raising a glass to his memory. I find now, to my surprise, that although this special time will never be the same again we still can enjoy festivities - which I would once never have believed possible. A great expression which I find inspires me is: “It’s not the load that gets you down, but the way you carry it”. © Cardiac Risk in the Young 9

A bereaved Mum’s feelings at Christmas Christmas is a time for families, good cheer, laughter and parties; that is, until you lose a child, when your whole life falls apart. Then I found the word ‘Christmas’ filled me with dread. I have been asked many times since our son died “How do you cope with the festive season?” - a question I asked of many others prior to our first Christmas without him. I find the build up intolerable. Our tactic is to shop early for presents, and only where carols are not played! I watch TV with the remote control in one hand ready to switch over when the adverts start. I hate how the shops compete for business. I do now open (rather than bin) Christmas cards and display only those from people who have troubled to choose carefully. Christmas Eve is when we visit the garden at Bristol Cathedral, where my son’s ashes are interred, taking holly and foliage from our own garden. I dread the 45-minute journey - it is the one we made the day he died. We spend from 10 minutes to half an hour or more, whatever feels right. I no longer beat myself up about it, knowing he is not there but is forever in our hearts. After lighting a candle in the cathedral we have a coffee or walk along the harbour, before visiting the tree we planted in his church. Then to our daughter-in-law and grandsons, staying late into the evening. Christmas Day brings a strange sense of relief that it has finally arrived. I no longer attempt to recreate the Christmases we once had. The first 2 years we went to friends, but nowadays find walking in the countryside, being in the middle of nowhere with no-one around, is therapeutic, calming and offers time for reflection. About 4 or 5 hours later we are ready to go home, physically tired but able to face the rest of the day. An evening meal and sitting in front of the fire with our other son rounds it off. The week after Christmas and leading up to New Year’s Eve I start planning future projects and holidays - I have to have something on the horizon to aim for. New Year’s Eve is harder for me than Christmas Day. It is the end of another year without him and it feels as though we are leaving him further behind. We spend the evening with our son, trying not to look at the clock and willing the fireworks not to start up to herald the New Year. And so another Christmas passes. It always feels as if we have climbed mountain after mountain to get through it, and we have. We have learnt over the years that it does not matter if you cannot put up the Christmas tree, or decorate the house, or stand in the kitchen trying to cook Christmas dinner. Whatever feels right is OK. Our children will always be with us. But responding to the first person who asks “Did you have a good Christmas?” is still and I suspect will always be - agony. 10 © Cardiac Risk in the Young

A bereaved Mum’s feelings at Christmas The first Christmas without my son was definitely the hardest to cope with. My fatherin-law, stepdaughter and her boyfriend spent the day with us and somehow I managed to cook a lunch, but can’t remember much about it. After that I tried to create strategies to deal with the festive season. I shopped online; asked my niece to decorate the tree with my daughter; and the “Happy Christmas” cards received went straight in the bin. The lead up to Christmas, continues to be a challenge with shops playing Christmas music and gifts and decorations everywhere. I used to buy the children a bag of chocolate money for their stockings and the last Christmas we had with my son, I remember him saying “Christmas wouldn’t be Christmas without these!” so, the minute I see those in the shops I get upset and realise that Christmas is round the corner again! Usually I only venture out with a list of what is needed so I can get what I want then go home. Online shopping is best for me, or a voucher if I am unsure about any gift. Small, quiet Christmas parties and get-togethers with close family and friends are easiest to cope with, because if I feel really sad they understand and hopefully don’t get offended if I cancel at the last minute. We’ve tried many different things on Christmas Day – spending it with a small group of relatives, on our own, and even going abroad. I’m from a very big family so spending the day with 20+ people was the norm, but I’m not sure I could do that again as there would always be one person missing. However, we have grandchildren now, and a niece with small children nearby who we enjoy seeing on Christmas or Boxing Day. They still appreciate the magic of Christmas and I get a lot of pleasure from seeing their little faces opening their presents. We tend to spend most of the day on our own though. After Christmas we often go away until the New Year. There is such a huge relief when the day is over that it feels like a reward for getting through it, and helps us prepare for the New Year. On New Year’s Eve I often volunteer to babysit as this gives the perfect excuse to stay in and go to bed early! The New Year is a hard time and just reminds me that I’m getting further and further away from my child. I haven’t seen the New Year in since losing my son and usually go to friends’ houses where we sneak away after a couple of hours. I am always in bed by midnight. We try the best we can to get through it because we can’t escape it. I have a friend whose brother died young and she told me that all she remembered of her Christmases was her Mum crying. My daughter was 12 then and I vowed that this wouldn’t be me - but I’m not sure if I’ve really achieved that. © Cardiac Risk in the Young 11

A bereaved Mum’s feelings at Christmas Christmas trees, baubles and music filled the shops within weeks of my child’s death. All things I used to love, but then found I dreaded seeing because I couldn’t bear being reminded of the happy Christmases I used to have, which I would never have again! I must have upset a few shop staff as I looked at window displays with tears running down my face. So I avoided the shops and found the wonderful world of online shopping! Christmas Eve always used to be a rush getting things organised for the next day, but after she died I felt things had to be different as my whole life had changed. I’m now very selfish in ensuring I have time to contemplate. I go to the midnight service at my local church, on my own or with family, then sit in silence and remember, before going home to put up the tree. It’s something we always did together but now I do on my own, with tears running down my face as I recall the stories behind each ornament. This has become a new tradition. That first year, I couldn’t face sending cards without all of my children’s names on, so my husband wrote a few for close family and friends and I trusted my neighbours to understand that it was just ‘too hard’. Now I sign them from myself, my husband and family, which includes us all. I remember vividly the feeling of dread in the run up to Christmas. The sick feeling in the pit of my stomach when I thought about Christmas Day. I still get that feeling but know I will get through it. I feel the anticipation of the day is usually much worse than the day itself. The first Christmas morning we stood at my child’s graveside with our wreath and wept. Now - first thing - the family goes to the cemetery with festive flowers and wreaths and sometimes send a helium balloon soaring into the sky. We stay a while remembering past Christmases, and cry some more. The rest of the day is informal and whoever shows up is welcome to join us for dinner. If we accept invitations out it’s on the understanding that if we leave early it’s OK! Everyone else is gearing toward New Year the week after Christmas. It is just as hard, but I only see it as another year without my child. In the early years I avoided social events, where I would need to shake hands and wish people all the best, but it’s got easier as the years have passed. Only do what you want to and if you want to sit in front of the TV with a cup of tea then do it. I have learnt not to do anything unless I feel like it - just what feels right for me at the time. As I write this I realise there are a lot of tears at this time of year, but they are not all sad. I have lots of happy memories which help me cope. I am not the same person anymore and have found comfort in the new traditions that have been created which have helped us travel through our journey of grief. 12 © Cardiac Risk in the Young

A bereaved Mum’s feelings at Christmas The build up to Christmas that first year after my son died heightened my feelings of sadness and loss. Instead of the usual enjoyment there was now uncertainty, dread and fear. Christmas traditionally started with his Advent calendar and the simple act of not buying one was upsetting – a small thing but something I had always done and now would never do again: it hurt. As he had always decorated the tree, I substituted this with displays of twigs with lights and a few baubles. Walking through the shops in a daze I felt I wanted to escape, but there was no way of avoiding the Christmas frenzy. It was happening, whether I wanted it to go away or not, and I had to somehow find a way to get through it. I couldn’t get my head round buying cards, let alone writing them - and was angry with uninvited advice telling me that if I didn’t send cards that first year I never would. So I did, and have done ever since. Receiving cards without my son’s name on was hard and I found the greetings insensitive. People only seem to understand the impact of the loss of a child if they have experienced it. On Christmas Eve my husband and I enjoyed the welcome distraction of delivering presents to friends, but I did miss filling our Christmas stockings with small gifts, which were always opened in my bed! On Christmas day I knew that I had to be free to do whatever I needed to and leave my options open. We only had ourselves to think about as my son was an only child, so chose to have lunch in a familiar restaurant and later spend time with my family. I don’t think they understood why I didn’t want to eat lunch with them as usual, but without my son it felt unbearable. We have since declined other family invitations too, as the thought of not being able to ‘escape’ panics me. I need to be near home, where I feel safe with my emotions. Now we visit family either on Christmas Eve or Boxing Day. Once the first Christmas Day was over it was a relief. We had gone through the motions without the excitement, and returning to my daily routine provided a comfort blanket. Christmas has since got easier, although it’s still the most difficult time of year with unpredictable emotions. The week after Christmas can also be hard but we stick to our strategy of doing whatever we feel like, often making last-minute arrangements. Going away for a few days after Christmas helps. Moving into a new year seems to take me further from my son, highlighting that part of me doesn’t want to move on. I dread hearing the words ‘Happy New Year.’ ‘Auld Lang Syne’ still brings tears and I can neither sing nor listen to it. Memories of past Christmases are always at the forefront of my mind and are like a precious Christmas gift to be treasured. They fill me with joy and sorrow in equal measure. The happiness I remember is in sharp contrast to how I feel now, but I wouldn’t be without them.

A bereaved Mum’s feelings at Christmas Coping with Christmas has become a big part of my life, although it seems hard to put into words how I cope. I suppose it is because I don’t really know how I do - if that makes sense? Before my son died I loved everything about Christmas. The shopping for presents, hours spent writing dozens of Christmas cards, standing for hours in the cold and crowded city centre with the children whilst waiting to see a B-list celebrity turn on the Christmas lights and finally the excitement of Christmas Day watching them open their presents. After his sudden death, Christmas, like the rest of my life, has never been the same again. The first year was the worst, I just wanted to spend the time in bed, but felt I needed to go through the motions for my daughter. During the year I used to do my weekly shopping online and the Christmas shopping in the supermarket, in order to experience the atmosphere leading up to Christmas. Now the thought of wandering around any shop with decorations everywhere and listening to Christmas music makes me depressed and angry. Seeing people laughing, joking and enjoying the Christmas lights and decorations hurts intensely. I try to get into town before the decorations go up to get a few necessary presents, but I am in and out as quickly as possible. Every year I wish I could go somewhere where I don’t have to think about it or could go to sleep and wake up when it’s all over. Our son loved Christmas, so I manage the lead up to Christmas by thinking that I need to try and enjoy it for him. I find the only way to get through this time is to take one day at a time. Literally not think too far ahead and just concentrate on getting past Christmas. Each year my dislike for Christmas gets a little easier. Once Christmas Day has passed I feel a sense of relief that it’s all over. The anticipation of the New Year brings the tension back all over again because it’s the beginning of another year without him and a repeat of dates and anniversaries and bad memories. The first Christmas Day after our son’s death, I set a place at the table for him. It was as if I had received a message to say that he may be arriving late, or there was a possibility that he might not make it. But in my heart I knew he was there and it got me through the day. I have never repeated it, but sometimes I feel I should set a place for him every year. This year I think I will. 14 © Cardiac Risk in the Young

A bereaved Mum’s feelings at Christmas The start of Christmas for me – I resolutely ignore the shops – is making the puddings in November. It’s my grandmother’s recipe and the smell of the puddings as they steam for hours is where Christmas begins. There are lots of memories, not just of my son, but of all my children, stirring the overflowing mixing bowl and making a wish. My wish was always ‘just for happiness’ but that feels odd now it is just the two of us who stir the mixture and wish. He died in February, but by the time Christmas cards were due to go out that year there were still people who knew nothing of his death. That was hard, to send cards and pass on such dreadful news. In the run-up to Christmases since then, nothing has felt as difficult as that. That first Christmas I did wonder how we would get through. I strongly needed it to be just the four of us - my husband and I, and our two daughters. Our wider families respected that - and the next year too. It was the third Christmas before I pushed myself, prompted by the girls, to re-join the big family celebration. My son’s absence is, of course, a constant; but the fact that he is not here is most obvious at family gatherings. In line with ignoring the shops and ‘Christmas from September’ I like to put a tree up as late as possible – Christmas Eve if I can. The tree is the most important part of Christmas for me. It was something he did with me. We’d get the tree upright, or nearly, in its pot and cut some holly. I could do with him this year, as the holly badly needs the top taken out of it. And each year as I tackle the high cobwebs I wish he was still here to wield the vacuum and get them down. This year when we decorate the tree I will still embarrass the girls with their primary school decorations and particularly the decorated cardboard bow with our five names written on it. It would devastate me not to have that on our tree – a memory of the time when there were five of us. And I will turn the lights on each morning until Twelfth Night, remembering the small boy whose job that was and the six foot plus young man who would lie on the floor later to flip the switch. At some point I will sit in the dark with just the tree for light and the smell of pine and remember. Writing this has made me cry. What is it about Christmas – and I am writing this in September – that brings the emotions to the surface and makes me feel vulnerable and sad? But I know I will get through it again this year, that Christmas Day will not be as difficult as the anticipation of it and that there will be a space for him and his absence. As for New Year, it’s never been a big thing for me – simply the start of another year without my son but with hope for the two of us and our daughters. © Cardiac Risk in the Young 15

A bereaved Partner’s feelings at Christmas Christmas is about spending time with the people you love, but what do you do when your husband isn’t there anymore and your world has been turned upside-down? I wanted to escape and shut the door on the world. An impossible task. The thought of Christmas filled me with dread, especially as the build up starts so early. I felt bombarded by invites to parties and endless images of the idyllic family Christmas. I wasn’t sure I could face it on my own. I wanted to carry on with our traditions and the fun plans we had for our son, but needed to make it different knowing it would be just the two of us from now on. This helped create some order. My husband was a big kid at Christmas and I wanted to ensure that his spirit lived on. We still got him gifts, I played the same awful music, watched the same rubbish films - all very emotional and difficult but something I felt I must do. I couldn’t bear to write Christmas cards without my husband’s name so just didn’t. Christmas Eve was the worst time, when my child was asleep and I was sitting alone with my thoughts with no husband to share anything with. Christmas was not as bad as the build up. Having a little one with a mountain of presents kept me occupied, but each new memory was tinged with sadness that my husband wasn’t able to share it. I concluded that coping with the day itself became easier when I realised I could not run away from my emotions, and nor did I want to. That as lonely as I felt I was not alone, because most importantly I had a gorgeous son who loved me and needed me and who deserved a magical Christmas to remember. Managing this helped me get over the post-Christmas lull when everyone returns to their lives and the bubble bursts. Then I was thrown back into the acute realisation that I was on my own. The house became exceptionally quiet again and the prospect of the New Year loomed. New Year was always spent with our closest friends, and I was fearful of going out but also being on my own. I even contemplated staying at home, but decided to go out and found everyone else was dreading his absence too! So the evening found us reminiscing, whilst laughing at the fact he was once again the centre of attention without even being there! What caught me out the most though was not being able to give him that first kiss on the stroke of midnight to say ‘Happy New Year’ and look forward to the plans we had made. I had no kiss and no plans because they had all been cruelly taken away from me. Nothing could have prepared me for the intensity of that feeling. What I did have was my baby son, loving friends and family and the knowledge that I’d survived my first Christmas. Where that strength came from I have no idea. 16 © Cardiac Risk in the Young

A bereaved Sibling’s feelings at Christmas I used to love the lead up to Christmas, enjoying every moment as it was so exciting and magical. The thing I loved best was that I knew, for a few days, the whole family would be together and we would have so much fun. The magic has gone now, as I know we will never have that same experience again. I do find it a difficult time, especially when people talk so much about being with their families (whether that is a positive thing for them or not). I can’t say I have any great solutions, as it is hard, but I manage it now by accepting I don’t feel the excitement and magic anymore. Simply joining in and having fun with friends and family means it is still a nice time of year. In doing that, I do have fun and enjoy it for what it is; and if I feel a bit low at any point, I let myself, as that’s OK too. On Christmas Eve and Christmas Day we had some great family traditions for both days but now have none - no traditions or pattern at all and just go where it makes most sense to be. Although it was odd at first, and initially only something we did to get through, it actually works quite well and has enabled us to be more flexible to changing family structures and locations than we perhaps would have been. We have also, more recently, been able to do a Christmas which was not so far from the tradition we used to have and, although we were all apprehensive, did have a really lovely time. We don’t intend to revert back to any pattern, but knowing that we can do it feels good. It is also a huge help to have children around. They just add so much fun and laughter to any occasion. Most importantly, we make sure my brother is very much part of the occasion, as he is throughout the year. We talk about him and laugh at our Christmas memories - tell the kids about him, and make sure we toast him a few times at least! When Christmas is over and the New Year approaches, and because I find the lead up to Christmas and the day itself so emotional, I like to use this time after Christmas to take a break. I go with how I feel and don’t force myself to do anything I don’t feel like doing. This is a period when I am happy to settle back into a routine more quickly than I would have done. I take time to myself and enjoy just having the opportunity to relax. I don’t go out to celebrate New Year anymore, but am quite happy with that, as I enjoy things being quieter. Above all, and much the most important thing to me by far, is that my brother remains a significant part of Christmas, no matter where we are or what we do.

A bereaved Sibling’s feelings at Christmas Christmas is meant to be a really happy, family time but when it feels as though your family has been shattered, what chance is there of a happy Christmas? After my brother died everything felt wrong and broken. Things would never be the same again. We had five months until the arrival of Christmas but how were we going to get through it? There’s always a big gap, an “empty chair”. It’s the same at all family gatherings or important occasions. At the beginning I thought I would never enjoy anything again. I’m not sure if my parents enjoy Christmas or if they are just getting through it, putting on a brave face. It’s been hard and painful, but I do now enjoy Christmas again. The first Christmas we all pulled together and came to my parents – my older brother and his family, my family and me, and my brother’s wife and four children. I felt that he would have been proud of us, trying hard to support each other; but it wasn’t a happy Christmas, although it’s got easier for me. I focus on my two boys. At times, over the years, it has felt like it’s something to just get through, but there are times, these days, when Christmas doesn’t feel quite so overshadowed by loss and grief. I suppose it’s the passage of time, something you don’t really want to hear or admit, but the initial trauma does fade. Although I am not sure if that’s true for my parents. Over the years, we have formed patterns. I go to his grave before Christmas and take some flowers and my parents always put a wreath there. We raise a glass at lunch and remember him. The lead up to Christmas can sometimes be worse than the day, with people trying to work out who is spending Christmas where and with who - but when there’s been a sudden death in the family, Christmas can feel like a dreaded day. In the early years, I didn’t feel happy and I didn’t even want to feel happy; and then, as time went on, if I did feel happy, I felt guilty. I have heard of families who do something completely different to mark Christmas, it’s like it can’t be celebrated, so they abandon the traditions. The week after Christmas can sometimes feel flat for everyone, but I think it has felt quite a relief over the years that it was over and we got through it. Initially the thought of celebrating New Year seemed completely crazy. It seemed that there wasn’t anything to look forward to and any party spirit seemed completely frivolous and out of the question. Again, over time, you adjust and I think my brother would want to think of us all having a good time, he loved a party! For us, it has been a gradual process of managing over time. We have tried to support each other as a family; managing Christmas with a deep sadness but trying to build some new memories and remembering him, sometimes with a tear and sometimes with a smile. In some ways, my New Year resolutions are now more purposeful - don’t waste a moment, live life to the full, grab every opportunity. Maybe that comes from not knowing what is around the corner and from experiencing the fragility of life. 18 © 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 held in a central Birmingham hotel which is 5 minutes walk from New Street station. They 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 19

Bereavement Coroner

Shock

Help Pathology Love

Inquest

Mourning Information

Anger

Isolation Sadness

Caring

Desolation

Numbness Yearning

Funeral

Distress

Support

Kindness Reconstruction

Grief

Life

Love