I think it’s important to tell you that I do not think my life is over. Or terrible. Or that I feel that somehow by having a disabled child I’m paying for something bad I did in a previous life. I really don’t. Hand on heart, for me, it really is just bad DNA luck (and sometimes good luck – who knew I’d feel that way?). No doubt life is challenging here but, currently, I don’t have trouble getting out of bed every morning. Well, I do, but not because I can’t face it, I just can’t face the time. For some reason we thought shabby chic bare floorboards in our rattly Victorian home was a good idea – so not only do they let in the wind they also aid the travel of the sound of Small waking up at 6 o’clock. Closely followed by giggles, hand clapping and rampant thumping of his feet on the bed in delight. Repeat till Mummy gets up. But anyway…
What I hadn’t banked on was the constant comparisons. I had somehow thought that by having a disabled child I’d be on this great big mythical boat with lots of other disabled children and their equally befuddled parents as we all tried to navigate this different life with whatever care and support we required. But actually, to continue the analogy, there are many separate boats and they all seem to look very different to each other.
Pre-Small I hadn’t realised the extent of the word disability – what does it mean? At that point to me it had really meant Kid in a Wheelchair. But it doesn’t. It can mean so many different things – child unable to walk, child unable to get out of bed or get dressed, child unable to eat very much, child tube-fed, child unable to deal with loud noises without dissolving into thrashing tears in the middle of the supermarket. I could go on. Most of you know what I mean. And quite often it’s a combination of at least 10 very different items from the disability shopping list.
In the world of ‘normal’ children – where I lived for a while when it was just us with Big – we had different comparisons. Were they walking yet? Were they sleeping through? could they make that toy work? ‘Oh, is yours not doing that yet?’ (I love the use of the word ‘yet’ – that certainty that it would happen). But here in the land of disabled children there is another unspoken sliding scale – how disabled is yours?
And there it is. I don’t see ‘Disabled’ – it’s always a slight shock when someone uses the word in reference to Small. Many of you would look at Small and his long list (dysmorphic features, unable to move independently, only able to feed if aided, pre-verbal) and think, Ooh, now *there’s* disability. I see Small. I see his wonderful laugh, his smile of pure delight, his voracious appetite, his love of movement, his enjoyment of being pushed in his pram in the wind, his utter delight in seeing his sister, his arms stretching out for a hug. He *loves* hugs. I genuinely could go on. I’m fully aware that his needs are complex and he will require lifelong care (though ‘fully aware’ and ‘totally accepting of’ are two Very Different Terms) but I don’t feel pity for him or me and am always mildly surprised in a ‘Who-me?’ way when someone offers it. I need time, support, wine and chocolates (not necessarily in that order) but not pity.
‘How disabled’ they are shouldn’t matter and shouldn’t be relevant. What matters is that their (and their parents’, and their siblings’) many and varied needs are understood. And met.