Let battle commence!

It’s a war, isn’t it? Parenting. A constant battle of wills. ‘Choose your battles’ people say. They mean that some things don’t matter. They mean it’s OK to let them say, not wear socks if they eat their greens. Or not flush the loo as long as they wash their hands.

I have bigger battles than those though. I have the ‘wear a giant lump of metal on the side of your head’ battle. And I don’t have a choice other than to choose it. I hate it when people say to me ‘it’s just like her wearing her socks / coat / *insert inane actually not important thing here’. Because you see the thing is, it DOESN’T MATTER if she (or he) doesn’t wear socks or a coat. It doesn’t matter if they don’t flush the toilet or wash their hands. It doesn’t matter if they don’t line up or eat green veg or sleep through the night.

What’s the worst that could happen? They get poorly? They get in trouble? They are tired? They are spoiled and bratty?

But if they don’t wear their hearing aids / processors, they can’t hear and they won’t develop speech. That’s HUGE.

And if they get poorly from not wearing a coat. Or are too tired from staying up late. There is an element of responsibility and consequences. That’ll teach ’em.

But if they grow up and can’t talk; can’t communicate well enough to order a coffee or ask the bus driver where a stop is, that’s different. I can’t teach them that that’s their responsibility now. It’s not. It’s mine.

There is no way for me to explain to Harriet that what she’s been given is a gift. An opportunity. An amazing miracle of hearing when profoundly deaf. She doesn’t understand and she doesn’t care. She just has annoying things on the side of her head that she wants to take off.

So it’s a battle of wills. Because it’s not about hearing or not hearing. Or speech development. Or ling sounds. Or mapping or graphs.

It’s about ON or OFF.

I’ve won before. Twice actually. And I’ll win again. She’ll wear these bloody processors. Even if she does it eating sweets for breakfast. Because my battle has been chosen for me. And I intend to win it.

A small but significant win.

Today my anxiety levels are high. I am stressed and tired and teary.

Our morning was rushed because I couldn’t drag myself out of bed which meant I shouted at the (deaf) kids. Then at breakfast William said to me ‘Mummy? Mummy. No shouting. No shouting Mummy’.

You know what that means? That means someone at school has said that to him. That means he’s been shouting at school. That means I really, really, really have to stop shouting. Cue more unbearable pressure on daily life.

He has cried so hard on the bus every morning this week. We have started every day in tears, both of us. The guilt, the pressure, the anxiety. All. Too. Much.

Harriet and I went to deaf playgroup. I LOVE deaf playgroup. There was a time when I hated it, hated having to be there at all. But it has become somewhat of a sanctuary for me. It’s calm and friendly and everyone there is the same as me. I don’t stand out. My kids don’t stand out.

It was quiet today, only three kids and we had plenty of time to talk. The staff gushed some more over our wedding, we talked more about Harriet’s impending operation, about William getting on a school.

All of it. All. Of. It. Was in sign language.

The teacher of the deaf said to me “I’ve never seen you sign before, you’re a natural. Have you had proper lessons? (I haven’t) Do you have qualifications? (I don’t) You flow so smoothly”.

The speech and language therapist said to me “you’re such an inspiration. It’s so good for all these Mums of newly diagnosed children to see you. You’re such a positive role model”. She even shed a tear!

And there, all of a sudden, I was winning.

I’m still an anxious, guilt ridden, shouty Mum. But, I’m one that’s pretty good at sign language. And that has pretty much made my week.

Doubt

You know how whenever you book a hair cut your hair goes all awesome and easy and you start doubting whether or not you actually want it cut?

It’s like that. Except it’s not my hair, it’s my daughter.

Harriet’s cochlear implants are scheduled for January 31st. We found out just before Christmas and I thought I could put it to one side for the fortnight we were away getting married. I managed the first week. But as soon as the wedding was over it crept in, every day. And since we’ve been home it’s consumed me more and more. I am horrible to be around. I am crabby, short tempered, shouty and mean.

Harriet, however, is awesome. She is so very clever. And so very funny. And so very sweet. And cute. And fun to be around. She’s awesome and she’s easy.

And I am almost certainly certain that we are doing the right thing. Giving her the choice. Giving her the option to hear and to talk. Maximising her chances of a happy, successful, fulfilling life.

But she’s so happy right now. And so perfect. And I’m changing her forever.

And, unlike my hair, her natural hearing (minimal as it is) will never grow back.

2013

2013. I cannot believe it has come and gone already. It’s been another ‘challenging’ year but one I am totally ending on a high… Not least because I get married in 4 days!!!!

William has been in full time school since September. And I mean FULL TIME. I put him on a special needs bus at 8.20am and he gets home at 4.20pm. My baby is gone all day long. This has taken a lot of getting used to for both of us and at times I have wondered whether we are doing the right thing. But now, a whole term has passed I am confident we are.
His language has SKYROCKETED. He is amazing. Every day he comes out with new words and phrases. He is funny, he is confident and he is oh so clever. I feel like school, by enabling his communication, has let him really grow into who is really is. Of course, this comes with a whole heap of guilt that I couldn’t do that etc etc but I am willing to shelve that to enjoy this wonderful little boy my son is growing into.
My H is a menace. She is hurtling towards those terrible twos with speed. She is just as headstrong as her brother and just as stubborn with it. She’s amazing. Her signing is the most beautiful thing to watch. I am filled with pride that, by the time she came along, I had decent signing skills and that I have been able to progress alongside her. She has not been stilted by me, at least to the extent Will was, as so is already confident and has an amazing sense of humour.
She’s booked in to have cochlear implants on January 31st. I am so scared and so excited for all of us.

For the past few months, I have felt, for the first time in a long time, happy. That day to day contentment. It took me by surprise after years of intermittent stress and anxiety (which still make an appearance, naturally). It could be because William is at school and it’s easier without him at home (insert more guilt here). But I think that, as well as that, it’s because we haven’t been at the hospital. Since the cochlear implant assessment was finished in July, we’ve hardly been. It’s amazing the stress that all of that caused. Going into 2014 and Harriet’s operation I am fully aware that we will be back in weekly appointments and the anxiety will return.

Until then though, I am going to enjoy Christmas, my wedding and drinking in the new year. I feel like I am going in to next year confident and happy, and really bloody proud of the four of us not only surviving another year, but coming out of it happy and in love.

So 2014, bring it.

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Divided.

So. We are cochlear implants a go-go. For Harriet. In January.

I felt nothing when they confirmed it. I was having a good week, was feeling strong and happy. We had expected them to say that. So it wasn’t really news.

The worst bit was when the surgeon said “I want to use the somethingorother implant because the coil itself, that goes into the cochlear, is soft. That means there is less drilling on her skull.”

I wanted to vomit. I want to vomit now just thinking about it.

It’s so hard being a parent, when what’s best for your child conflicts with what’s best for your child.

She needs implants. I want her to have implants. It’s what’s best.

But drilling in to her effing skull.

How can that be what’s best?

I am having similar emotions with Will being at school. He’s so tired. And he cries so hard every morning when I put him on the bus. He holds on to both my hands so tight and begs me to stay at home.

My freaking heart starts every day in two.

But it’s what’s best. His language is coming on. I know that he loves it there, that he’s making friends, that he adores his teacher.

But he’s only 3. And he’s gone for 8 hours of the day. He’s my baby. And he has black bags under his eyes. He’s only 3.

Hopefully in 5, 10, 20 years I will know that I did what was best. That, although hard, in the choices between what’s best and what’s better, I made the right call.

But right now I’m being torn in two. And it hurts so bad.

Bastard hope (again)

A few weeks ago, 4 maybe, Harriet had grommets put in her ears. Grommets are little tiny tubes that sit in the ear drum to drain the fluid. She had too much fluid, you see, and it was affecting her hearing.

The difference was awesome. She had never really turned or startled to sounds.
Now she did.

Harriet has been, more or less, profoundly deaf since birth and cochlear implants have always been on the cards. I think, really, she should have had them before now but I wasn’t ready. The idea was too much – the surgery, the acceptance that this was it, that she would have no natural hearing whatsoever. But I came round. And the assessment process was started. And the grommets were inserted.

And she could hear.

I tried really hard not to let him in.
I tried really hard not to let myself think that way.
I tried really hard not to believe that maybe, somehow, hearing aids would be enough.
I tried really hard not to hope.

But she turned.

And then came the hearing tests.

She can hear. She’s out of criteria for implants.

But she’s still severely deaf. Hearing aids won’t give her enough access to sound to develop speech. That’s a terrible position to be in. Too deaf to talk but not deaf enough to get implants. I surprised myself at how calm I was relaying this tale. How I managed to keep myself from crying.

Today we had another hearing test. Turns out she can’t hear after all. She’s still in the criteria to get implants. She still has 2 profoundly deaf ears.

Is that good news? I guess so.

So why do I feel so utterly floored?

I’ll tell you. Because of that bastard hope. I tried to keep him at bay, I really did. I didn’t even realise he’d let himself in. I had no idea what had been going on in my very own mind until today when it was crushed.

We can do it without implants. We’ll work hard. We’ll try hard. She’ll talk with just her hearing aids. She is better off without this major surgery. I’M BETTER OFF without this major surgery. The odds are against us but we’ll win. We’ll show them all.

But we won’t. Because she needs surgery. Because she’s deaf. Always has been, and always will be.

My beautiful, beautiful girl.

My heavy, heavy heart.

Fuck you hope.

Where we are

This morning we are off to the hospital. The same hospital we’ve been to countless times. The familiar journey, familiar play room, familiar faces on reception and in the cafe.

But this morning is different. This morning we aren’t going to the audiology department. This morning we are going to the COCHLEAR IMPLANT department.

This is huge. And this is scary.

I’m trying to go about the morning’s usual chores of laundry and dishes and I keep randomly bursting into tears.

These are my babies. I don’t want people drilling into their heads. I don’t want them to have big magnets on the side of their heads. Mostly, I don’t want them to be scared.

But I want them to hear. And I want them to talk.

Even now, 3 years later, I am still surprised by all this. Deaf kids? Me? Now? What? Deaf kids? Genes? Syndrome? What?

This isn’t what I envisioned having children would be like – endless hospital appointments, endless heartache, endless surprises and endless, endless guilt.