It's a brilliant piece of writing. Ian & Linet Birrell and his wife are so clearly devoted to their daughter, who, although she has been dealt a bad deck in so many ways, is so very lucky to have them as her parents.
Like most families, we struggled to handle the shock of the diagnosis, our dreams seemingly destroyed and fearful of the future while desperately trying to hold a shattered family together. We went from the joy of birth to the depths of depression at breakneck speed. There were periods of intense brooding and tortured discussions. The Camerons also went through a similarly grim period, sleeping beside their son on hospital floors and endlessly discussing how to cope as the hot spring of 2002 turned to summer.
David has spoken very movingly in public of how "you grieve for the difference between your hopes and reality". Eventually, you do learn to cope with the trauma of living your life on an edge, of having your sleep disrupted and your social life occasionally wrecked. More importantly, you come to adore the child as much as any of your other children even when, as Sam admitted to me, you worry about their welfare every second you are apart. I once asked David if he thought Ivan enjoyed life. He paused for a long time, then looked up and said: "Not really, I think his life is very tough." But he called him his beautiful boy and Ivan meant the world to him and his family...
...Listening to some of the coverage in the media yesterday, there is a common sentiment expressed that Ivan's death will be a form of closure, that there might be a sense of relief that the struggle is over. This is a view that reveals so much about attitudes to people with disabilities. No one should be fooled: the only feeling will be one of numbing grief at the death of a cherished member of a family. People have asked me if the death of a disabled child is less traumatic, given that it is always a possibility. I can't imagine that the trauma is any less intense.
We are fortunate that Iona is still with us and that we can still enjoy her life. But no parent ever gets over the death of a child – and a disabled child, even one with profound learning difficulties for whom life is a struggle and filled with pain, is no different. Our daughter's life brings us sorrow, but it also brings us intense joy and meaning. Ivan's death means only that, beside the happy memories, there will be a scar on his parents' hearts that can never be healed.
Thursday, February 26, 2009
I challenge anyone to get to the end of THIS terribly moving article without tearing up. Ian Birrell is a journalist for The Independent. He and his wife have a profoundly disabled child. They met the Camerons at a dinner party and have been friends ever since. He tells the story of how he and his family have coped with their daughter, Iona, and how their experiences been mirrored by those of the Camerons.