Nobody asks to have a disabled child. I can think of none of my contemporaries who would have sat down in their NCT class and said:
‘I’d like a child with disabilities please. I’d like to spend the first year in a state of total confusion, not knowing if they will see their first birthday. Moreover I’d like to spend all the times I’d usually have spent at baby group – discussing poo or lack of sleep – in a hospital near me, getting on first name terms with the A&E nurses. Lastly, as they grow up, I’d like to never really know if they will be able to walk or talk – I like a challenge’.
This is not what we ask for. This is not what we envision.
Society is afraid of imperfections. Our glances slide over the things, the people, we don’t wish to see, are somehow embarrassed of or embarrassed for. We fear the unknown. Would prefer to box it away in special schools and special homes. Out of sight so we are not reminded of our own frailties. But it is not so scary. There will always be imperfections, because they are what shines the light on all of us, and surely better to embrace them?
We say this with a knowing nod, we know it is a cliche, but I am a better person and my life is richer for having Small. He has taught me so much about myself and life that I would never have unearthed otherwise…
… I’ve stopped sweating so much of the small stuff. I’d be a liar to say that a messy house doesn’t bother me, or that I didn’t wish I had the energy to pick up the dropped food from the floor every single meal time. But I’ve learnt not to always do it, and that time spent with Small, just playing, cuddling, giggling, that’s what makes us both happy.
… We try to make the most of time. This isn’t as big as it sounds. We don’t do Great Big Symbolic gestures, huge presents, but we try and find a positive. Not every day, because some days are just so awful – so awful – that all I want is for them to end, but most days. What good thing happened recently? This did. Small kissed his Daddy. He asked him and he kissed him. Today was a more gallows humour moment over, should we get a stairlift, what a great way of conveying the laundry up the stairs it would be.
… I’ve stopped tolerating bureaucracy, being accepting of the easy option of It Will Do. I’ve started complaining. This most times revolves around Small, but who else will be his voice, his advocate? So I question more – why isn’t this in place? has this been thought about? who can help me do this thing? It’s wearing, but getting a result, moving a process forwards. Huzzah.
… I am more patient. Developmentally Small gets there in his own time and there’s only so much I can push him along. Getting grumpy that today he doesn’t want to practise the saving reflex over the peanut ball, that today he just wants to roll around giggling whilst I try and manhandle my slippery fish of a boy over it… that helps noone. So we stop, try something different. Or we go for a walk. Smell the fresh air. Give in a little to my little boy who’s just a boy. This also applies to simply getting out of the door. Small has so many ‘accompaniments’ that anything less than 10 minutes can’t be done. So there.
… I relish movement. Watching Small fighting against his body to turn around, reach a toy has made me appreciate my own body. The ease with which I can get dressed, walk up stairs, do up my buttons… it is a small miracle that I take notice of and am grateful for every day. And watching Big… I am not sad for Small, just happy and grateful for her ease of movement. Every day.
… I have met, and spoken to, the most wonderful group of parents that I would never have met but for Small. You all know who you are.
… I am always tired. But I think this may be just parenting.
If Small had been… not-Small, if he had been a’normal’ neuro-typical little chap my life would have been different. Less challenging maybe, less sad for sure and my back and knees in better shape. He has taught me a lot, this wise boy of mine and for that, and for the wide-eyed cheekiness that he has, for the blink-and-you’ll-miss-it wonder of his development, the motivation he now has to get that thing, THAT THING MUMMY!!!! I love him, and would have him no other way.