'When you lose a child, you bleed and keep on bleeding'

More than five years ago, Paul Clabburn's son Tom died suddenly from a rare and undiagnosed heart condition. He describes how he and his family have learned to live with their grief

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Tom died in his sleep on Friday, 5 October, 2007. He was 14. Unusually, he had felt unwell and been diagnosed with a virus the day before. I checked on him in the morning, glad he'd been catching up on his rest. I knew straight away that we'd lost him but I tried to save him. When a paramedic arrived, he took one look and said, "Oh Christ."

I remember feeling detached. I remember the unearthly cries of my wife, Claire, and trying to think, to organise. I rang Claire's mum and dad. I remember the tone of my mother-in-law's voice as she tried to take it in. I remember thinking even then I was glad my own mum and dad had died and I didn't have to tell them.

At some point during this period we had a house full of ambulance staff and police. The senior ambulance officer was keen to tell me the response time and how many ambulances had been dispatched. I wasn't keen to listen. A police doctor told me that he thought Tom had probably died from appendicitis. Something the GP should have spotted had killed my son.

Tom's sister, Ellen, a year younger than him, had already gone to school. The police drove me to her. She'd been taken out of class. She knew. I knew she knew. You weren't taken out of class without it being bad news. I can't remember what I said to her but I can remember her face. I wish I couldn't.

Back home, the family had gathered. Those of us who wanted to say goodbye to Tom did so. I'm glad I spent time with him.

I can't remember much of the rest of the day, only the evening. For some reason, we decided to go to the pub and raise a glass to Tom. All our friends gathered. I've still no idea how it came about but in hindsight I'm glad we did it. There was a large turn-out. People were primed to do what they could.

I spent a weekend wondering how Tom had died from appendicitis. The coroner's service, who were excellent, said they'd call Monday and did so. If I had to have such a conversation, then this coroner got it right. I can't even remember his name but I can remember what he told me and how he sounded. He was very gentle. Tom had died from an extremely rare heart condition. Nobody could have predicted it. Nothing could have been done. He advised that our family should be checked.

I was stunned yet oddly elated. It hadn't been anything we could have prevented, nothing straightforward. I wish I could recapture that feeling. Now I realise there was a possibility, the slimmest chance that Tom might have survived if diagnosed correctly or screened.

The funeral was organised for the following week. It felt unreal. The service was in the church where both Tom and Ellen had been christened and gone to Sunday school. At least there was a link. We all spoke. I remember the courage of Claire and Ellen, tearful one minute, speaking the next. The church was overflowing. It was a celebration of a life. It brought no relief.

After that the cards kept coming and people kept helping. Then the cards came to an end and over time, a long, long period of time, there were fewer expressions of sympathy. Only to be expected, of course, but not what I wanted or needed. I always recall the thoughts of a woman whose brother had died suddenly. She wrote that for the first year she cried every day, the next every week, the next every month and now not as often; but, when she did, it was every bit as hard as that very first day. That's me, too.

Much of my life hasn't changed. I feel I still think the same things and make the same choices. I still get irritated by the small things in life and angered by what I consider the bigger injustices. To the latter, I've added the all-too-often preventable loss of 12 young people a week.

I didn't consciously re-evaluate my life or my outlook. Life carries on with a Tom-shaped hole in its fabric. Sometimes it rips further, sometimes it's less frayed, but it's always there. It's there in a way I accept yet occasionally resent. Sometimes it makes me smile but more often it makes me sad, a sense of longing for what might have been.

Typically I'll feel upset if I think about Tom, and guilty if I wish the thought had never occurred to me. On top of this is the overarching sense of guilt that I didn't protect him. I failed my son. I'm told it's not rational to believe that but it's how it is.

That Claire and Ellen inspire me to put one foot in front of the other is also how it is. Claire and I are still fighting, still laughing, still struggling to live with what has happened. As ever we have different views on Tom, different ways of dealing with loss. But we endure.

The perception that men and women grieve differently – for example that a man might be more inclined to "bottle it up" while a woman is freer to express her emotions – may well be true. However, that doesn't alter the fact that, in my experience, whatever your gender, when your child is cut from your life you bleed and keep on bleeding. There's no "right" way to try to deal with that except the way that's right for you. Finding that way, of course, is the problem.

Ellen, meanwhile, is both my greatest hope and my greatest fear. Hope because I now see a young woman who appears, despite everything, to be a rounded human being. Sure, she's spent her teenage years discovering booze, fags and goodness knows what else, but she seems to have done this in a way all teenagers do. Fear because who knows what goes on in somebody's head, especially that of your own teenage daughter? It's not the easiest or most communicative of ages. Do I just see what I long to see? However we think we dealt with Tom's death as parents, Ellen will have a different perspective. I simply hope for the best.

Our wider family and closest friends have stuck by us with love and grim determination. It's not easy. With family, some cope by talking about Tom, some not. Whatever the attitude and whether born of age or character, it can lead to tension. There's no obvious compromise and therefore, on this subject, we rub along.

With friends, I see Tom's peers are now young men who look completely different from the boys he knew. Children who were younger than Tom are now older than he'll ever be. I don't like that. If Tom died when an imaginary clock struck midnight, it's still only a couple of minutes past to me. For our friends, of course, it's five years on. That can't be helped. That's reality.

It's reality, too, that Tom was a happy, loving, live-for-the-day boy. I'm glad he was as special as only a "normal" person can be. I've also realised as I write this, that it's not quite true only Claire and Ellen keep me putting one foot in front of the other. Tom does, too.

Cardiac Risk in the Young has produced a downloadable booklet for bereaved fathers. Go to crydadsgrief.org

Life after loss: support for fathers

Paul Clabborn was one of the fathers who contributed their own stories to the booklet "A Father's Grief", put together by Cardiac Risk in the Young (CRY). The booklet intends to address the fact that men often react to the death of a loved one in unexpected ways – they may not express their grief in what is considered the "correct" way.

The grief of men, says the chief executive of CRY, Alison Cox, is not properly understood. "Men grieve differently from women," she says. Fathers are often seen as the head of the household and so are "expected to 'manage' when faced with such a devastating situation".

The Compassionate Friends, an organisation which helps to support the bereaved families of children who have died, suggests that a father's grief may be more difficult to understand because it may not manifest itself in an obvious way.

Fathers may be more likely to try to hide their emotions in order to care for their spouse or the siblings of the deceased child. They are more likely to go back to work sooner than the mother after the death of a child, feeling as though they need to continue to provide for their families.

Grieving parents can contact the Compassionate Friends UK helpline on 0845 123 2304 for support and guidance through the difficulty of losing a child.

Cruse Bereavement Care provides support for anyone suffering the loss of a loved one and can be reached on 0844 477 9400 or by email at helpline@cruse.org.uk

Elsa Vulliamy