Tuesday, 20 December 2011

Still a shame but less ashamed

PhotobucketSo the idea behind ghosts of blogging past is to republish a post from your first week blogging. I picked the post below and, to be honest, it was hard enough for me to read it back, let alone republish it. But as heart wrenching as it was it was also wonderful to see how far we have come. From a baby who couldn't talk or sign or keep his hearing aids, in 5 short months, we have a toddler who can say about 5 words, sign about 50 words and keeps his hearing aids in all day every day.

But the huge thing for me is how far I have come. I still carry a massive burden of guilt. I still blame myself and I still spend a lot of time worrying about the future. But I am a good Mum and I feel like a good Mum. I am so proud of how many signs I know and how quickly I can pick up more. I am so proud of my ability to do whatever it takes to communicate with my son. In a lot of ways we have our little world. I understand his little grunts and noises and half words. I understand what signs his clumsy baby fingers are making. But more importantly for both of us I no longer feel ashamed. Ashamed of him or ashamed of myself. I feel proud of both of us, of how far we have come and of how far I am certain we will go.

But this is not supposed to be a new post, it is supposed to be an old one...

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.


  1. I am happy to hear from your preface that he is doing so well. The mommy guilt when such things are in our lives is excruciating. And very little anyone says ever assuages it. William has such a loving and aware mum that I have no doubts that he will have a marvelous life :)

  2. I can tell he already has a great momma! I'm sorry for what people say to you! I can see your love for him through this post and it's beautiful.
    Stopping in from Lovelinks :)

  3. I'm glad you and he are both doing better now. You shouldn't feel ashamed of the feelings you experienced (and still do I'm sure) related to your child. It sounds like you're a wonderful mother!

  4. Oh, I"m so glad you added the "new" post that you aren't feeling ashamed. Sounds like he got his fierce determination from you - which is really one of the most important things we need in life in order to be happy, isn't it? Good for you, and good for him. Even though his experiences will be different, he'll still have great ones, and hard ones, like everyone else.

  5. Anything can happen in 5 months, yes?!


  6. This is why I loved this link up so much. To go back and look at who we were vs who we are now. I get what you mean about the guilt. My middle son was born with a hole in his heart and I had a lot of guilt, like you, because I made him. Love hearing that things have changed in the last few months!!

  7. Mum, yes, that is what you are, regardless of what your baby is going through. That will never change. It takes a special mum to do what you do. Keep doing it!

  8. I think it's wonderful that the both of you have come so far.

  9. I can't tell you how much I relate to this past post. My son suffered a stroke in utero, and I have been worried about how different he will be when he grows up. I'm ashamed of that. Also, I want to ring the necks of people who say things like, "God only gives special children to special people," and, "He's fine. You can barely tell." Grr.

  10. I can so relate to this as well. I am glad to hear how far you all have come. My first posts were close to yours in trying to make sense of what we were experiencing through sharing my vulnerabilities. I have the "could I have done something differs t?" thoughts even now but like you have found acceptance and faith in what we can and will do for our little E. I hope your mini continues to progress! Happy Holidays to you!

  11. Thanks so much for all your wonderful, kind comments, they all really mean a lot to me.

    Ali. xx

  12. Sweat pea... I know exactly how you feel as my son too wears hearing aids. He also wears SMO's in his shoes (insert braces for his feet). When I found out that he was going to need hearing aids, I lost it! I had just found out about the inserts a couple weeks before... and now this. I remember thinking to myself - Why don't we just tattoo "Hi! I have special needs!" on his forehead. But after my initial anger wore off, I realized that things could be much much worse. As that thought and/or statement didn't take away the pain in my heart for the challenges my son will face in his lifetime; I did find that it helped me accept the cards we he was dealt. I am so happy to hear that you too have found some peace in your heart for the challenges your son faces. It in no way shape or form is your fault. We as parents only want to protect and provide the best life possible we can for our children. Not only will you be amazed at how well your son will adapt to his disability... you will be proud of how he'll overcome it and become an inspiration to others.

    Hang in there, Dear! Sorry I'm so behind on commenting - I'm still playing catch-up.

    Thanks so much for linking up this special post with us for Ghosts of Blogging Past! :)