Miracles

I wholeheartedly wish that we hadn’t given Harriet cochlear implants.

The whole point was to give her more. More choices and crucially, more independence.

With no balance system she has even less of those.

I can’t see in to the future and I don’t know what Harriet’s life is going to pan out to be. But I know deaf people that are happy. I know deaf people that can communicate, that have friends,  spouses,  children and jobs. They have success,  ambition and independence. They can run, jump and function in the dark. Whether or not their footing is steady does not matter to them. They are fine.

I don’t know anyone that can’t balance without their sight. But it breaks my heart that my daughter can never take a stroll along the beach at night time. Never swim safely in the ocean. Will need a friend to assist her down the stairs in the cinema. Won’t be able to wash her hair in the shower because closing her eyes will make her fall down.

We still don’t know how or why it happened.

But I do know that it was the wrong decision. And that that is something we are all going to have to come to terms with.

So forgive me if I’ve got no time for cochlear implant ‘miracle’ stories.

Forgive me if this article in the Observer makes me want to throw things across the room. Of course I’m happy for these children but why wasn’t mine so lucky?

And forgive me if today’s emotional video of Joann Milne moves me to tears; not because I am happy for her (although I am) but because I am painfully angry that my daughter has a different story.

Why have none of these people had life altering side effects? Or, more importantly, why has my Harriet?

And how, as a parent,  am I supposed to live with having made that choice on her behalf?

Advertisements

I knew – a lesson in instinct.

As I have mentioned before,  Harriet lost her balance after her cochlear implant operation.  She couldn’t hold her head up at first, it took her over a week to re – learn to sit and about 3 weeks before she could walk. Now she walks but it’s a stagger. She falls from surface to surface and often stumbles backwards if unsupported for a time.

From the moment she came round from the anaesthetic I knew there was something wrong. The doctors told me it was the anaesthesia.  The nurses said she was just clingy.  At her post op review the surgeon said to me that if he’d done the same to me I’d have reacted that way.  I knew he was wrong.

Today,  almost 6 weeks after her operation I walked into a room that I thought would have our consultant doctor in it.  Instead there were 4 consultants.  A balance specialist,  a paediatric specialist, an audiological specialist and our consultant.  You do not get the time of 4 senior doctors unless it is serious.

So in that moment I knew. I knew that what I knew that I knew was, in fact,  true.

She has no balance system. 

It has gone.

During surgery,  they butchered it.

You need 3 things in order to balance. Your vestibular system (balance system in your ears). Your eyesight.  And to feel the ground beneath your feet.  You can manage with 2 of these.

She will learn to balance using only her eyes and feet. She will compensate.  She will walk steadily again.  She will be fine. 

But then there are the buts.

She can’t ever be left alone to swim. As a child she must be watched meticulously and as an adult she must always, always have a buddy with her. Because you see,  she has no way of righting herself under water. She will never be able to tell up from down and will easily drown. Because under water she doesn’t have her eye sight or her feet on the ground.

She can’t ski because in a white out there are no visual clues so she cannot balance. 

She won’t be able to walk down stairs in a cinema because it’s dark and the footing unsteady. 

She won’t be able to run on the beach in the dark. 

She will need a night light on the landing forever. 

She won’t be able to close her eyes in the shower.

If she doesn’t have clear vision,  she will fall down.

I am so angry that this happened at all. I am so angry that so many people made me feel like a neurotic mother when I knew.  I KNEW.

I am so sad that yet more doors have been closed to my girl.

This operation was such a big decision for us as parents. And we did it to give her options, to offer her opportunities. 

And here now it feels like for every door we opened up,  another one has closed. Who knows if she would have been a happier deaf skier than she will be hearing cyclist. Who knows if running along the beach in the dark could have made her happier than hearing her brother’s laughter.

Who knows if she’ll hate me forever for trying to fix her but actually breaking her that little bit more. 

But I knew. I knew as soon as she came out of that operating theatre that they had broken my girl.  And I knew it wasn’t ordinary or expected or what was supposed to happen. 

Maybe that’s what motherhood is. Not knowing ahead of time what decisions to make or foreseeing what will go wrong.  Maybe it’s dealing with what you have right now. And trusting that maternal instinct.  And fighting for what it is telling you.  This is not the first time I have had to fight against medical professionals to prove something my maternal instinct was telling me. And I doubt it will be the last.

Maybe that’s what motherhood is. A fight.

Either way, I knew. And while I am heartbroken for Harriet and for myself,  I feel empowered that I was right.

Maybe that in itself is enough.