This is Daniel.Hilary and I have the joy and privilege of looking after him. His main home is with his mum and dad, two disabled brothers and three able sisters. As respite for his main family Daniel spends part of every week, and most or all of some weeks with us. The arrangement is supervised, monitored and supported by our local Children's Services department. It's called Shared Care.
Daniel has lissencephaly (lissencephaly, we say, we shall say this only once.) His brain is smooth when it shouldn't be. A smooth brain can lead to a jerky life. In Daniel's case jerky episodes can turn into prolonged epileptic fits. Daniel can neither walk nor talk, though he can get about and make very meaningful sounds and gestures.
We think of Daniel as ours - but not ours.
We didn't choose him. He was given to us. We were vetted and selected - but we didn't select him.
We don't know how long we've got him for - or how long he's got - or how long we've got.
He'll never be able to repay us - or disappoint us. Our pleasure and rewards are of the simplest kind.
Every moment matters - is all there is.
Wherever Daniel goes he takes a very big cushion (bigger than him) and a Sky TV remote control - and that's when he's travelling light.
His rule for life is: If you want the full attention of someone, sit on his head.
3 comments:
What a beautiful boy, a lovely expression in his eyes. I gazed at his little face for quite some time.
Wow - two disabled brothers and three able sisters. That's a handful. They must thank God for you guys. Do the brothers have the same condition?
Such a cool thing you guys do, David.
That's a great picture, and very evocative. Just look at the eyes - he's in there, somewhere .... somehow.
Sue,
You're so right about Daniel - and so encouraging to us. Thanks.
Anonymous,
Anonymous you may be. Perspicacious you certainly are.
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