Wednesday 13 July 2011

Such a shame

I feel like I need to point out that I love my son. To me he is everything. He is the smartest, funniest, cheekiest, most handsome boy there ever has been. And I love him more than I ever thought it was possible to love anyone. And now this is the part I say 'and I wouldn't change him for the world'. But I would. I wouldn't change his temper, or his fierce determination, or his need to throw half his lunch on the floor and I wouldn't change his beautiful ginger hair even though I lose sleep over worrying about him being bullied at school.

What I would change is the fact he can't quite hear what we can. He's not profoundly deaf, just partially. This is supposed to inspire some kind of hope in me. 'He has got some hearing though' people say. As if that makes it better. As if that means that just part of my heart is broken, not all of it. Even if he does learn to talk, he might talk 'funny'. He might sound like a deaf person, because that's what he is. He already doesn't babble like other children his age. It's more of a grunt. He will never be able to listen to an iPod without everyone else listening to it with him. He can't play sport because what is 'wrong' with him will get worse if he hits his head. No rugby, no American Football and soccer only if he wears a helmet. He will be that kid that wears a helmet in PE. He will be that kid who wears hearing aids. He will be that kid whose iPod is laughable loud. He will be that kid that talks funny. He will be that kid who doesn't hear the mean comments the other kids make about him.

When I think about all of these things, and the hundred more that cross my mind every time I look at my beautiful baby boy I feel ashamed. Ashamed of his hearing aids. Ashamed of his funny sounding babbling. Ashamed of the fact he is deaf. I am so very very ashamed. And then I feel ashamed of being ashamed of someone so very wonderful. But it's not him I am ashamed of. It's myself. I am so ashamed that I gave him less of a chance at life than any other child. I failed him from the beginning. Denied him a world of experiences.

Now I know that you are all screaming 'but it's not your fault!' and you may well be right. Despite a barrage of tests, we still don't know why William has dilated vestibular aqueducts. Perhaps we never will. But the facts of the matter are that I built him and even though I can see in my head that it is not my fault and nothing I did or did not do would have made any difference, in my heart I will never ever be able to forgive myself for letting my baby down.

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