Genetics Part 1: A love affair

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 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.

We had known this was a potential reason for Will’s hearing loss for sometime. I sometimes thought that I would resent him if this was so. 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.


2 thoughts on “Genetics Part 1: A love affair

  1. I just wanted you to know how happy I am I came across your blog. Wish I would have found it sooner. I as well have a child with pendred’s. We found out officially when he was 9 months old. Reading your posts reminds me I am not alone and as rare as pendred’s is….I am not the only mom who feels this way. Thank you. -Kadie

    1. So lovely to hear from you and thank you for your comment. I often feel like the blog is so depressing but the journey is so hard and it really helps to write about it. Am glad you’ve found it helpful, you are definitely not the only mum who feels this way. Xxxxx

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