I talked a while ago about how William has been refusing to wear his hearing aids. I think he started pulling them out about 2 months ago and we haven't had them in for longer than about 3 seconds at a time since. We tried everything; being nice about it, being mean about it, being strict about it, bribery, treats, threats. Ev-ery-thing. And it always ended up in William crying and more often than not ended up in me losing my temper and crying and sometimes Shaun doing one or other or both of these too. So we gave up for a little while. Tried occasionally but more or less resigned ourselves to this period of 'self expression' and concentrated on signing (which has come along 3-fold over the summer so no time wasted).
And then today. Today was the day it all changed. Today Will wore his aids for 3 hours this morning and 4 hours this afternoon. Sure, he pulled them out every now and then but we put them back in and he continued about his business. No-one has cried. No-one has lost their temper. It's day one so I am anxious and patient and excited and nervous and very very pleased that even if tomorrow doesn't bring the same, today did. It feels like we have turned a corner.
But the overwhelming emotion I have felt today is, surprisingly, sad. And it's taken me a while to figure out quite why. It started as soon as Will walked into the kitchen with his hearing aids in so that should have been my first clue. I am happy he is wearing them, of course. I am happy because he can now access more sound and speech. I am happy because he is no longer fighting us about it. I am happy because he is happy. But I just feel so so so sad that he has to wear hearing aids at all. I just can't shake it.
When we were in Cornwall for a week, we stayed with two other families. He didn't wear his aids and at no point did we tell any of them about Wills hearing impairment.
We spent this past weekend away with some old friends and some new ones. No hearing aids and no-one talked about his hearing.
When we were out today and he had his hearing aids in, I could see people looking at them and all I could think was 'what are they thinking about me?'.
I have talked to you before about the heavy weight of shame I carry around with me and I guess what I am trying to say now is I thought it might have moved on, lessened somewhat. Since writing this blog, I have felt a huge weight lifted from me. Talking, writing, processing has helped me sleep better at night and laugh more during the day. I thought I was feeling better.
But turns out, it wasn't the blog at all. It was just the lack of that brutal physical reminder that is the actual hearing aids. They were gone and so was my guilt. And now they are back and although I am very, very happy. I am also, once again, utterly distraught.
This guilt business is going to be harder to shift than I thought.
Showing posts with label shame. Show all posts
Showing posts with label shame. Show all posts
Monday, 29 August 2011
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.
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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