A little piece of ‘normal’

We went away as a family this weekend. This, to most people I know, would not have been a big deal, but for us, with Small, it was huge. Paramount in our heads was WILL HE SLEEP? But it was also: will he cope with new surroundings and all those shouting children all the way down to…. have you brought his cups, his booster chair and enough warm clothes? For Small, with his inability to move about, gets chilly when we go for those bracing winter walks. Big, within 10 minutes of running around tells me she’s hot, hands me her carefully-thought-through-by-me layers and disappears. Small loves being outside, but his nose goes red, his feet and hands go cold so he needs careful watching.

This weekend is something that we have done every year for as long as I can remember. First we went in couples, just the 10 of us, then slowly, slowly, children appeared until as of two years ago we all had 2 a pair. 20 people descend every year on some unsuspecting holiday rental. Until we had Small, it was always an unequivocal yes, but then, well, a little more trepidation. Not just the above, but also how will we cope with other people asking questions, with the children wanting information on this little boy, who is not a baby, but acts like one, with the adults voicing more guarded, more searching, more sympathetic thoughts.

We talk a lot about our Bubble. The world we inhabit where we know just where everything is if we need it, just where we can go if things bcome too stressful. It is, if you like, our safe place. But goodness, we have to break out of it sometimes.

We had the best two days. Big was in her element, running around with 8 other kids, round the house, round the park, in the cafe. She has her own little mate in that group, a boy a year younger. There is a post for Big, all in her own right, coming… but Big is not a girlie girl and sometimes she finds it hard to find a level with her girl friends at school who do still like fairies, and with the boys who won’t always play with her because she’s a girl… but this little boy and her bonded. They swapped facts on Harry Potter and space and dinosaurs… they were inseperable. And Small, he had a blast. New children to watch, new toys to play with and all these grown ups who wanted to make him laugh! And we… we relaxed because our children were happy and these friends who had known us since before Small just accept him.

Small slept and with that came two days of talking very little about disability but just chat, about people’s lives, and where we’d been on holiday and how we were all arranging Christmas. And we ate good food and drank good wine and OH and I remembered that we have to push ourselves – push ourselves out of the house, into different environments, with different people because otherwise there’s the danger that we’ll forget how life is outside our Bubble. And I can’t think of anything more debilitating for our whole family than that.



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