Genetics Part 2: a resignation

res·ig·na·tion

[rez-ig-ney-shuhn]

noun

1. the act of resigning.

2. a formal statement, document, etc., stating that one gives up an office, position, etc.

3.an accepting, unresisting attitude, state, etc.; submission; acquiescence: to meet one's fate with resignation.

 

It is with a heavy, heavy heart I resign. From having children. It is one of the hardest decisions I have ever made and I am still not certain about it. But I think it is the only real option. 

 

We, my baby daddy and I, carry duff genes. A tiny, tiny imperfection that doesn't affect either of us at all. But it affects our babies. 

 

 

 I have always, as long as I can remember, wanted 4 children. 

The diagram above makes it look like if I had my four children that just one of them would be unlucky enough to inherit our deaf genes. I wish that was true. What it really means is that every time we reproduce there is a 25% chance our child will be deaf. We have taken that chance twice so far and both of our children have been unlucky. That's 100%. 

Our children are fine, they will live normal lives and there really is very little that they won't be able to do. But the early years of their life are a lot of hard work for us as parents. Not to say all parents don't have their work cut out, but we are learning sign language, teaching sign language, conducting daily speech and language therapy. We are battling to get hearing aids kept in, replacing them when they fall out, watching constantly to see if they are being pulled out. We have 6 weekly hospital appointments for new moulds. We have 6 monthly hearing tests to attend. We have to catch our children from every fall that we can't prevent because if they hit their heads they could lose their hearing altogether. Not to mention all the energy we put into feeling guilty and into loving them so much to compensate that guilt.

It's exhausting. 

I can't do it another two times over. 

It wouldn't be fair on them and it wouldn't be fair on us as individuals or us as a couple.

And so, with bitterness, I resign.

Genetics part 1: a love affair

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.