I often wonder what people really see when they look at Small.
If you just looked at him for the briefest of seconds there, in his buggy, watching his sister being pushed on the swing, you might think nothing. Or you might think, ‘Well, what a lovely scene’.
But if you looked closer, for more than a second, you might see more. You would see that his buggy was, well, oversize? for a child of his age, he’s 3, right? Surely he could just manage in a MacLaren. Well, no, he can’t walk you see, so he needs something comfortable to sit in for long periods of time. And because he has hypotonia – low muscle tone, a bit floppy if you like – he needs those supportive struts on the side. You would see that he flaps – both arms and legs – which is unusual in a child. Not for Small, he loves a good flap. It’s incredibly sensory for him, he loves the feel of air on his limbs, it gives him a sense of self in space. And you would see that he isn’t necessarily looking at his sister, he’s looking at, well, it’s not clear actually. No, and it isn’t to me either. He has CVI – Cortical Visual Impairment (you’ll have to look this one up) – but, essentially it means that what he’s looking at isn’t necessarily what he’s seeing. He might be looking at Big, way up high in the air, but what he’s seeing is a small boy running across the payground.
From all this you might extrapolate out… oh no, he’s disabled, poor, poor them. Thank God that’s not me, and you’d walk off. But you’re only getting half the story. Granted, this is not a path I would ever have chosen. It is, without doubt, the hardest thing I’ve ever done. A disabled child in the family affects everything and that maternal guilt we all get with ‘normal’ kids? Double it. The effects ripple out to your marriage, your career, your friends who, with the best will in the world, just Do Not Get It. And the siblings… Good God the siblings. Always placed second in order that the other child is happy, has done their therapy, is asleep.
However, like in Sleeping Beauty with the magical last fairy that just turns it around from awful to actually ok… here is the more than ok. A disabled child holds a mirror up to life. You learn to really value things. Achievements when they happen are huge, they are not taken for granted. You learn to stop moaning about the little things, because the big things are the only things that matter. And they are still children. I can only speak for us and Small here, but Small finds things funny, he is so easily amused and we queue to make him laugh. He is amiable, good-natured, able to play by himself. And now that he can sit up, the world is his oyster.
I have seen such kindness in people who just want to help. And Big. She adores Small. And Small. He worships Big. Big and I were sat at breakfast the other day and she said, ‘When I grow up Mummy I want to be a Ninja, a writer and a teacher to SWAN children to help them learn’. And I paused, not wanting to say too much or tell her how happy that made me and said, ‘That’s lovely Big, but see how you feel when you’re older?’
‘Well, I definitely want to be a ninja!’ She is only 7…
But the point is, and here I know it’s not just me, having a disabled sibling has made our other children more considerate human beings. And hurrah for that.
As with all children, Small is more than just the sum of his parts – you just have to look a little closer.
Small is my child, This is my Child.
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