Really sad news yesterday about the passing of Ivan and my thoughts and prayers go out to the Cameron family at this time. It is, and has been said a lot, a devastating thing when a child dies - even if its kind of expected.
As an adult with a less severe degree of Cerebral Palsy, I can recall the anguish of my own parents as they had to live with the expectation of a shortened life for me. As things have turned out, despite living with a major illness since my late twenties. I have now out lived my Mother and I expect to outlive my father too, who is now struggling with old age.
My point is this (and I think its important to say) that, while there are many children in the UK with complex disabilities, a significant number will grow up into adulthood and with the right support and love from the community in which they live and the support of the government which they will have the right to vote for, can go on to have a good quality of life and contribute to the rich diversity of this world.
I'm very mindful that perhaps for some parents of a disabled child Ivan's passing has brought a keener sense of anguish for there own particular circumstance. And I would encourage anyone reading this entry, if you know of a parent in that position just offer them your support.
It may be something as simple as offering them a cup of tea and an opportunity to talk, or perhaps something more involved like, if possible, taking their child to the park for an hour so they can get a break.
I think bringing up a child with any sort of long-term illness or disability is the hardest job in world. For some parents it can be a most isolating and lonely experience and they need all the support they can get from those around them.
Buts let's also remember too that though there is anguish and heartbreak, the courage of children like Ivan does bring joy and makes the human race just a little more humane. Don't you think?