We always knew Ivan wouldn't live forever, but we didn't expect to lose him so young and so suddenly. He leaves a hole in our life so big that words can't describe it. Bed time, bath time, meal time - nothing will feel the same again.
We console ourselves knowing that he won't suffer anymore, that his end was quick, and that he is in a better place. But we all just miss him so desperately.
When we were first told the extent of Ivan's disability I thought that we would suffer having to care for him but at least he would benefit from our care. Now as I look back I see that it was all the other way round. It was only him that ever really suffered and it was us - Sam, me, Nancy and Elwen - who gained more than I ever believed possible from having and loving such a wonderfully special and beautiful boy.