Living in limbo

I’m in a funny place at the moment. Having a diagnosis so early is tough. It’s very difficult to face the fact that your child could be severely disabled and (the killer) mentally retarded. Funnily enough that takes the shine off the babymoon pretty quickly.

Yet if I didn’t have it, I’d be worrying even more about Ted’s development. At least I can let go of analysing every move for signs of the next milestone. I’m free: he’s on his own schedule and he’ll get there when he gets there. Or not, if the predictions are true.

The good thing about him being so tiny is that we blend in. I can see that he’s behind already but it’s not hugely obvious. In casual meetings most people won’t pick up that he hasn’t found his hands or has no vocal skills beyond his funny little cooing. Or that he doesn’t know how to roll and won’t be able to do baby-led weaning because he can’t hold a slice of mango, let alone stuff it in his mouth. But I know. And therein lies the rub.

If we hang out with the regular baby crew, it breaks my heart to see them jiggling about, sucking on toys/fingers/toes, laughing and rolling around. But the other option – the special needs brigade – well, that’s just as hard to take, to be honest. I’m not ready for the world of special chairs, and g-tubes and masses of meds. Will I ever be?

It’s a process, coming to terms with disability. I feel wrong saying that, but it’s true. Surrounded by very sick or compromised kids makes me feel odd. Like we’re a raggle-taggle bunch of misfits on the periphery of society. Maybe that says more about my attitude to disability than I would like. But all I know for sure is that wherever we go, I just don’t feel we fit in. We’re not like everyone else, but we’re not obviously disabled yet either.

So, after a life of yearning to be different and special, now all I long for is to be average, to blend in.

I just want to be normal, whatever the hell that is.

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