Sunday, 27 May 2012

Hearing aids take 2

My little H had her hearing aids fitted last week. It was the best moment of my life. Than it itself makes me want to vomit. Let me tell you what happened.

It was one of those events that I didn't know I was stressed about until the morning of it when I couldn't stop crying and still didn't quite know why. My Mum was here to look after Will while I took Harri on my own but due to the waterfall that was my face her and W ended up coming with me. The tube line we needed to get was down. The other one takes longer. Longer to get to the station, longer on the tube. Someone pulled the passenger alarm. We were late and sweaty and oh.so.stressed. But I had managed to stop crying.

We have recently changed hospitals and the new one is amazing. Rocking horses in the reception. A whole floor of toys and games for the kids while they wait. A-maz-ing. Will was happy, Harri was sleeping. Things were looking up.

We were called in for our appointment and they audiologist went about the usual tests. Checking her ears for wax, looking at her ear drum to check for holes, etc, etc. Poor Will was so baffled why it was all happening to Harriet and not him.

And then came the moment. My Mum was holding her as Will played in the corner and I had an eye on both of them. They attached her tiny perfect moulds to the hearing aids and put them in her ears. And then they turned them on. And she began to laugh. A laugh that came from deep in her tummy. One of those wonderful giggles that only children can do. The ones that make your heart swell. She had never laughed before. The audiologist was talking, my Mum was talking, she was listening and she was laughing.

I was sobbing.

It was the most heart breakingly beautiful moment.

Galt Playnest



I have been putting off writing this post. Not because I haven't used the Galt playnest. Or because I haven't loved the playnest. But because Harriet's hearing loss has hit us hard, as a family, as a couple and as parents. And it's hard for me to say anything at all that isn't 'Ahhhhhhhhhhhhheeeeeefuckityfuckityfuckityfuckitybluuuuuuuuuuuuurrrrrrrrrrrhhhhhhhhhhhuuuuuummmmpppppppph'. You know?

Regardless, the sun has been shining and we have been in the garden a lot. Morning, day and evening. I love hanging out in our garden. It is small but perfect. It is an easy 'room' to be in. Entertaining, safe, warm. And our little Harriet has loved being in our garden in her new playnest.


It's like a doughnut. It comes in two parts, the cover and the ring that needs blown up. The instuctions say for a youngy baby like Harri just to partially inflate so that her back remains flat. We tried this but she ended up just sinking into it and couldn't really see much or gain anything for it. When we inflated it more and she was more upright she seemed a lot happier in it. Around the edge there are flaps and squeakers and the like that obviously Harri cannot benefit from as yet. Will, on the other hand, had a great time finding the cat under the flap and squeaking the ducks beak.


I think it will really come into it's own in a few months time when Harri is starting to learn to sit. You know that age where they can sit unaided but only for a few minutes until the topple backwards hitting their head (a bigger deal for my kids than most) and you end up having to surround them with cushions? Tada! Stick them in a playnest and if they fall they are cushioned. And, if they manage to remain sitting there is plenty for them to look at and play with. I like it.


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Monday, 14 May 2012

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. 

Wednesday, 2 May 2012

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.

Tuesday, 1 May 2012

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.

Monday, 16 April 2012

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.

Wednesday, 11 April 2012

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.


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