Friday, 27 February 2009

Ivan Cameron's legacy to the living (Telegraph)

Full Article:

Mother of two disabled sons Henrietta Spink offers an insight into the anguish of the Camerons
My heart goes out to the Camerons. A few years ago, David wrote me a letter saying that my book, Henrietta's Dream, about the heartache of caring for our disabled sons, had touched him and Samantha profoundly. Parents of disabled children are an emotional club, brought together by the constant fear of our children dying.
Death is such a presence in our lives that my husband and I rarely discuss it. Every morning, when we go in to our boys' rooms, we wonder if they will be alive. We have seen so many of their school friends die. The parents of those with degenerative diseases have the agonising experience of watching them slowly losing their faculties, while those whose children like Ivan Cameron have cerebral palsy and/or epilepsy and are prone to fitting, often find that children who seem fine one day can be gone the next.
People who don't have a severely disabled child will think that death must be to some degree a blessed release. A tiny part of you does feel that, but a parent's guilt and the grief is so overwhelming that it far outweighs any relief. When you have a very disabled child, you feel totally responsible and overwhelmingly protective. Such children so totally swamp your life that, if they are no longer there, the void is enormous.
It is hard to move on. I once spoke to a mother for four hours about her son and only discovered at the end that he had died six years earlier. I've seen parents burst into tears at the sight of my sons because theirs were no longer with them, even though theirs had lost all function and awareness. Even if you have always known at the back of your mind that your child might die, nothing prepares you for the reality of loss.

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