Yesterday I was chatting to someone on one of the many sites I browse in and out of, and I was asked about my children.
I gave my standard reply.
"I have two boys aged 15 and 18, and the 18 year old is disabled."
I've found it is a good idea to add this as it stops difficult questions, for example about how I get on with his girlfriends as that just makes me miserable.
Sometimes, as yesterday, people ask what the disability is, and after trial and error I give learning difficulties and mild autism as a standard reply again.
Yesterday, however, this met with a different response..
"Come on, that's not really disabled, is it?"
I was a little stunned, only afterwards wondering if it was a misunderstadning of the word learning disabled. I usually add "more like 8" to give an idea of his level of functioning, but neglected to yesterday. So that comment burned on me last night and into today and came back to haunt me at lunch time.
We had gone round to see my brother and his family, staying at my mother's house. Their delightful 5 year old was, as ever, star of the show, running round like a mad thing before becoming enthralled, as many children are, by Son1's little dances.
Son1 loves standing in his grandmother's hall, in front of her mirror, doing strange movements, while making equally strange noises. His cousin watched and then by some ruse, probably by throwing teddies at him, got Son1 involved in a game.
It seemed to be a complicated one, with rules designed by Son1, who loves making up games with rules which involved shrieking, throwing teddies up stairs and through the hall until both were exhausted. I filmed some of it with my new cam and all said how sweet it was to see them playing together so well.
At one point they sat on the floor together, mentally ages so similar, physically oceans apart. One small and compact and cute, big black eyes, dark hair and cheeky little face, the other tall and chunky and covered in eczema, awkwardly stooping down to be small like his companion.
I watched as cousin put out a friendly hand to son1 who patted him on the back. "Well done, you won" he said.
And my heart broke, as it often does in moments like this.
Son1, 18, "not disabled" but happy to play a 5 year olds game.
Because he is at a 5 year olds level, in many ways.
Seeing nothing strange about it, seeing it as natural, relating to his cousin as an equal.
And in the meantime, son2 his in the front room, so he wouldn't get drawn in.
Acting like a teenager should and would.
And I thought once more of what could have been, should have been, if only those medics had taken more care....
The pain never goes.
It just becomes more naturally a part of life with son1.
Something to be expected and accepted.
To be borne till it goes, till it fades into the background again.
To emerge once more when the next challenge comes along.........