As you probably know, since we found out about Will's hearing deficit I have blamed myself. It's hard not to. The way I saw it, I built him in my body and therefore it was my body that had failed him by building that particular bit to a substandard level. I use the past tense in that there sentence because I no longer feel like that to that extent. It's taken a lot of time and blogging but I have, for the most part, accepted that we can't change it and blaming my self was helping no-one.
We recently learnt that Will definitely has Pendred's Syndrome; a genetic defect affecting his vestibular aqueduct and cochlea.
For this to happen, Shaun and I both have to carry a gene defect that when paired with the same, create the syndrome. It has to have been in both of our families for generations, hiding silently. Lurking.
I sometimes thought that if this turned out to be the case I would resent him. I thought I would resent the universe for bringing us together. I thought I would be angry. And I thought I would doubt our relationship and our future.
None of these things happened.
I felt guilt. Horrible, drowning, suffocating guilt. I felt sorry. So very, very sorry. Sorry for saying hello on the stairs. Sorry for sending flirtatious emails (we met at work). Sorry for letting him fall in love with me. Sorry for having the gene that, when it met him, meant he had disabled children. Sorry for not being one of the millions of other girls he could have met. Sorry for having the gene. Sorry for ruining his life, for making it that much harder, for causing him all this pain.
Guilt, a mother's ruin.
But not sorry I met him. Not angry I met him. Not sorry I fell in love with him. Not angry that he made my children disabled. I felt bad for him but not bad for myself.
It made me love him that much more. There is no-one I would rather travel this journey with.
Showing posts with label cochlear implants. Show all posts
Showing posts with label cochlear implants. Show all posts
Tuesday, 3 April 2012
Tuesday, 4 October 2011
A disappointment
When William was 6 months old we went for the first time to what is officially called 'Toddler Group'. In our house it is called 'Deaf playgroup'. Because that's what it is. Playgroup for deaf kids, kids with hearing aids, and cochlear implants. Kids who communicate through sign language.
It was hard. I didn't want to be there, I didn't want a deaf kid. I didn't want to learn sign language, I didn't want my kid to have to. I didn't want to hear what the other Mums had to say. I wasn't interested in how it was going to get better, how successful their kids were, how 'normal' life could, in fact, be.
But we persevered. And it did get better. And William did achieve and develop. And life does, more often than not, have a semblance of normality about it. There was one Mum in particular that helped me a lot. That very first day, she was the only one who talked to me. She asked how I felt, how my partner felt, my parents, his parents. She discussed tests with me, told me her story. She made me feel welcome and comfortable and most importantly, she made me realise that life goes on. That this wasn't the end.
And deaf playgroup became a wonderful thing. It was first thing on a Monday morning, it got us up and out the house. It was a 30 minute walk so it got me exercising and in the fresh air. William adored being there and socialising with the other children. For a long time Monday afternoons were the only day he would nap for 2 hours. It was part of our routine and we loved it.
And then the Government had to make cuts. The NHS had to make cuts. Playgroup is every other week now, somewhere new. On paper it's just a different children's centre in a different area, fortnightly instead of weekly.
To us, it is now two buses or a 20 minute walk and then a bus to get there. It takes 50 minutes.
The room it is in is upstairs. I have to leave my pushchair outside, even in the rain. I have to carry our bags and William up 2 flights of stairs.
The room is much smaller. Today there were 6 children, all William's age and it was crowded.
There are leaflets at a reachable level so the kids can pull them off and get in trouble for it.
There is no kitchen to make a cup of tea, just a shelf for the juice that again the kids can reach and again get in trouble for spilling.
It's on every other Tuesday, so if you miss one week, it's a whole month between playgroups.
These all might sounds silly or small. But they make it harder. And combined they make it hardly worth my while. I am pregnant and tired, if I am going to travel 50 minutes somewhere and the same home, it has to be worth it. And today just made me feel like it no longer is. Which is a real shame because it used to be the highlight of our week. And I really would have liked to have given the support that Mum gave me to another Mum with a newly diagnosed deaf baby.
Have budget cuts affected you and your family? How does it make you feel?
It was hard. I didn't want to be there, I didn't want a deaf kid. I didn't want to learn sign language, I didn't want my kid to have to. I didn't want to hear what the other Mums had to say. I wasn't interested in how it was going to get better, how successful their kids were, how 'normal' life could, in fact, be.
But we persevered. And it did get better. And William did achieve and develop. And life does, more often than not, have a semblance of normality about it. There was one Mum in particular that helped me a lot. That very first day, she was the only one who talked to me. She asked how I felt, how my partner felt, my parents, his parents. She discussed tests with me, told me her story. She made me feel welcome and comfortable and most importantly, she made me realise that life goes on. That this wasn't the end.
And deaf playgroup became a wonderful thing. It was first thing on a Monday morning, it got us up and out the house. It was a 30 minute walk so it got me exercising and in the fresh air. William adored being there and socialising with the other children. For a long time Monday afternoons were the only day he would nap for 2 hours. It was part of our routine and we loved it.
And then the Government had to make cuts. The NHS had to make cuts. Playgroup is every other week now, somewhere new. On paper it's just a different children's centre in a different area, fortnightly instead of weekly.
To us, it is now two buses or a 20 minute walk and then a bus to get there. It takes 50 minutes.
The room it is in is upstairs. I have to leave my pushchair outside, even in the rain. I have to carry our bags and William up 2 flights of stairs.
The room is much smaller. Today there were 6 children, all William's age and it was crowded.
There are leaflets at a reachable level so the kids can pull them off and get in trouble for it.
There is no kitchen to make a cup of tea, just a shelf for the juice that again the kids can reach and again get in trouble for spilling.
It's on every other Tuesday, so if you miss one week, it's a whole month between playgroups.
These all might sounds silly or small. But they make it harder. And combined they make it hardly worth my while. I am pregnant and tired, if I am going to travel 50 minutes somewhere and the same home, it has to be worth it. And today just made me feel like it no longer is. Which is a real shame because it used to be the highlight of our week. And I really would have liked to have given the support that Mum gave me to another Mum with a newly diagnosed deaf baby.
Have budget cuts affected you and your family? How does it make you feel?
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