Cochlear Implants

Will's hearing loss is moderate to severe. Moderate in his right ear and severe in his left. They take the best ear they say. So they say he has moderate loss.

Harriet's got nothing. She is profoundly deaf in her right ear and severe to profoundly deaf in her left. That means at best she has a severe hearing loss.

She is having hearing aids fitted next week but they aren't expected to make much of a difference. She has been referred to the cochlear implant team. I can't say that out loud. It's huge. And it makes this experience very, very different to the one we have so far been on with Will.

When she first failed all her tests I thought I would be OK because, despite it not hurting any less, I was more prepared. I had done it before with Will. But I haven't done this before.

She will have to have surgery. 3 hours if they do just the one side, more if they do both. General anaesthetic. An overnight stay. Scars. Pain. Risks.

The implant is made up of two parts - the one that is implanted in the cochlear, in her skull, and the one that attaches to the outside of her head with a magnet. The outside bit reacts to things. One of these things is static. This means that with it on she can't go down slides, can't play in a soft play area.

So if she can hear, she can't play. And to play, she can't hear.

Cochlear implants are a medical marvel. They can take my deaf daughter and let her hear. But she can't go down slides.

It's a cruel, cruel world sometimes. 

New Friends. Old Feelings.

I have a new group of Mum friends since having Harriet, They are lovely, really lovely.

Here comes the but...

But they are all into this 'baby signing'. "Teach your baby to communicate before they can talk", "reduce frustration and therefore tantrums" etc etc.

Now. I am all for signing. Obviously. I will vouch for it's benefits. I agree it reduces tantrums.

But my kids are deaf. They have to learn sign. I have to learn sign. We don't have any other way to communicate. And you know what? I am bitter about that. And I don't think I realised quite how bitter.

I have talked before about jealousy. It's back. Actually I don't think it ever went away. But it's just been given a new lease of life along with my daughters.

I sit around talking to all these new Mums about their beautiful, perfect babies and all I find myself thinking is 'but mine is deaf'.

I feel so much guilt.

I thought it would be different if it happened again, easier somehow. But it is exactly the same. I feel so responsible. So guilty. And so, so, so bitter.

So please excuse me if I don't want to sit around chatting about baby sign. Or how your baby has just started gurgling. Or how at 10 weeks you can already have a conversation with her.

Because I don't have any of those things.

I have a deaf baby.

And I will never, ever forgive myself.

Please.

Almost exactly 14 weeks ago I found out that my fiance had skin cancer.

Today I found out that the cancer is gone. He will have regular checks for the next 5 years but, for now at least, the C word is no more.

It has been a tough 14 weeks.

There were 2 operations, 1 big, 1 small.

There were tears. There was stress and drama and shouting and hugging and anger and guilt and love and hate. There was bitterness and resentment and hysteria and compassion and sympathy and pain.

It has been a tough 14 weeks.

But today we came out the end of it and he is cancer free. He is alive and he is healthy and he can continue to be the wonderful Father to our children that he always has been.

And so, I beg you, again. Check your moles. Go to the doctors. Get a referral. Waste peoples time. Because if you go through what we went through and come out where we came out today then it will all be worth it. But if you ignore the signs or choose not to look for them you might not be so lucky.

14 weeks ago I thought I was going to be raising our two children alone. Today I am drinking champagne and feeling lucky and in love.

So please. Check your skin, your breasts, your balls. Go to the doctors. Don't wait until it is too late.

I know I'd miss you.

Worry

I am so tired. So very, very tired.

Not tired that a good nights sleep will fix. Or a year of good nights sleep for that matter. Tired in my bones. Tired in my soul. Tired of coping. Tired of having to cope.

I don't have a choice, I don't want a choice. If there was a choice I would only choose to cope. But I am so so so tired.

Harriet has an MRI scan tomorrow. She has to be asleep for it. I am worried about getting to the hospital on my own. I am worried about Will going to his child minder on a day he usually spends with me. I am worried about getting Harriet to sleep. I am worried about her staying asleep. I am dreading seeing her tiny body in that huge, noisy machine. I am dreading the tantrum Will will inevitably throw when I pick him up as punishment for leaving him.

I am tired from having to pretend that all of these things will be OK.

Shaun has an operation to remove more skin from his calf on Thursday. I am worried about it. I am worried about the general anaesthetic. I am worried about not being able to be there with him. I am worried about him coming round on his own in hospital. My heart breaks when I think about how badly I wish I could be there holding his hand. I worry about how much pain he will be in, about how out of it the anaesthetic will make him, about how sick he will feel for days afterwards. I am worried about his two week recovery. I am worried about explaining to Will why Daddy can't walk, run, play football. I am worried about how upset Will is going to be about the whole situation. I am worried that I will be neglecting Harriet because I am spending so much time worrying about Shaun and Will.

Do you see?

I am so, so, so very, very tired.

Hope is a dangerous thing

There is a quote from one of my fiance's favourite movies, The Shawshank Redemption, which has been running through my head of late.

Let me tell you something my friend. Hope is a dangerous thing. Hope can drive a man insane

I hate hope. What I hate most about it is how it creeps up on me when I am not looking. Bastard hope sneaks in and settles itself down, getting all comfortable. Just to be swiftly replaced with utter devastation when it leaves, scarpering into the distance leaving not even a trace of it's existence.

When we fell pregnant with Harriet we knew there was a chance that Will's hearing was caused by genetics and that, therefore, she would have the same. But still I hoped. I let myself hope that she wouldn't be that unlucky, that we wouldn't be that unlucky.

When she was inside me, squirming around, I let myself believe that she squirmed in reaction to Shaun's voice, to my voice. I let hope in.

In the hospital, when she failed her newborn screening hearing test at just hours old, I heard myself say 'her brother is deaf' and I heard the audiologist say 'it could be just fluid, she had a very quick birth, it's common' and I chose to believe her over what I should have known to be true. Hope made me.

And so today, when we sat for hours as she was sedated and prodded and poked and tested, I hoped. I hoped that the doctors would turn around and say 'hurrah, she can hear!'. I know that she doesn't startle at all and I know that she already failed two hearing tests and I know that there is a chance she has a genetic condition that makes her deaf. But that bastard hope was there, the whole time, taunting me.

And then when they did turn around and say that she can't hear, that she will need hearing aids, hope was gone. When they said she has a severe loss in both ears and will struggle alongside her brother to talk and learn, hope was nowhere to be seen. It deserted me. It left me empty.

Let me tell you something my friend. Hope is a dangerous thing. Hope can drive a man insane.


Back to reality and back on the Yeah Write wagon. Come and have a read of the other awesome bloggers that are there with me. Oh and vote for your favourite if you like!

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.