Survival

I started blogging as a way to get stuff out of my head. A way to stop it going round and round as I tried to sleep or as I paced the streets with a pushchair. It really helped me. It helped me to feel, and to be a bit less consumed by my feelings. It helped me process and channel and accept.

Right now there is too much to process. Too much to accept. Too much even to blog about. I have so many feelings about so many things I don’t know where to start. They consume me in a way so strong I don’t know they are there. I feel like I am living above them. Functioning with every day life because what choice do I have? They are bubbling below the surface of normality, allowing me to feed and clothe my children. But I know they are waiting for their time to come. Occasionally they sneak up, trying to get out. A tear escapes, a knot in my stomach twists. Usually when someone says something nice to me like ‘I don’t know how you are coping, you’re amazing’. I don’t know how I’m coping. I know that I don’t have a choice. And I know that these feelings won’t always be under the surface. One day their time will come and they will erupt. And an almighty eruption it will be because there are so many of them and they are being kept deep down so that I can function. So that my kids are fed and clothed. So that we survive. Because that’s all I can hope for right now. Survival.

My husband has thyroid cancer. It has spread to his lymph nodes. Last week he had surgery to remove his thyroid and the affected lymph nodes. He was in hospital for 7 days. In a few weeks he will need to have radiation. He will be in isolation for a few days and then cannot be in the family home for weeks afterwards.

William fell and bumped his head. He had concussion – vomiting, paleness and a loss of balance. After a few hours in A&E he was allowed to go home with the all clear. The next morning he woke up profoundly deaf. He has no hearing at all. Can you imagine losing your hearing? Can you imagine being a 4 year old boy and losing your hearing? We are lucky that we have the sign language knowledge that we have but it is not enough. His communication is very limited and his frustration is high. He is a very difficult child to be around at the moment. Very angry and who can blame him. We rushed through the assessment for cochlear implants because we need to fit it in between Shaun’s op and his radiotherapy. It’s on Friday.

Harriet had a regular check up last week at which it was discovered that one of her implants has failed internally. So she also needs surgery to remove and replace it. They hardly ever fail, they tell me. Just like kids hardly ever lose their vestibular system during the surgery.

So many feelings. About so many things. I have no idea how I am coping. I have no idea how I am supposed to cope. But I am surviving. We are all surviving. Right now that’s all I can hope for.

But be sure, when those feelings come, they’ll be coming to this here blog. And there’s going to be a lot of them.

PS – Sadie passed her hearing test. Woot.

A new dawn

I haven’t blogged since July. Since then we’ve been through the mill (again) but come out fighting (again) and winning (again). I am consistently surprised by our strength and resilience.

The same week we found out about Harriet’s balance being a permanent loss we found out we were (unexpectedly) pregnant. At the time it felt, honestly, like one more thing had gone wrong. We were struggling. Individually, as a couple and as a family. We were so utterly heartbroken over Harriet’s surgery fuck up that the thought of another child was overwhelming. The thought of another deaf child was too much. The thought of going through cochlear implant surgery again. The pain. It was so awful to think of a baby as a problem. So we started not to. We came to terms with the pregnancy and remembered the joy that both of our gorgeous kids bring us way way outweighs the deafness and any challenges that comes with it. They are people. Happy, successful, amazing, kind, beautiful little people.

So, in November, Sadie arrived.

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She’s ace. And we’ll find out tomorrow whether or not she is deaf.

I told myself throughout the pregnancy that I wouldn’t think or feel anything about the deafness. There’s a one in four chance she has Pendred’s syndrome and will be deaf. I couldn’t care either way. I couldn’t let myself. Except I caught myself writing blog posts in my head about her being hearing. And I found myself feeling a deep, deep sadness when she didn’t move around in my tummy to loud noises. But then I also worried about not liking her if she is hearing. About wanting them to all be the same, even if that means she has to work a little  (lot) harder at life. I tried so hard not to feel but it’s impossible.

Since she’s been born she’s definitely responded to sound. She startles in her sleep if the big kids tip out the big box of duplo. She winces when they scream in her face. But then she sleeps through them screaming at each other. And through the chaos that is family life.

Will responded to some sounds as a baby. It took so long to diagnose him and I spent all those months reassuring myself (and being reassured by others) that he was hearing. Levels of deafness was an unknown to me. And the heartache when he was finally diagnosed is paralleled only by Harriet’s permanent balance loss. So I can’t let myself think or feel anything. Which is, of course, unavoidable.

We’ve been married a year today. I think, ridiculously, it’s been the hardest year yet. It feels like at every turn, every, single turn, we’re dealt the hardest possible hand. Even Sadie’s birth was an emergency cesarean, the recovery from which has been yet another steep challenge.

But we’ve made it. We’ve even had some fun along the way. The big kids are thriving. Against all odds really.

Shit keeps on coming. And we keep on batting it right out the field.

So tomorrow. Bring it.

The days are long but the years are short

The days are long but the years are short.

I heard this saying a while ago and it really struck a chord with me. Especially with Will napping on the bus home from school, the days can go on until 9 or 10pm before he’s asleep and I can start to wind down. I am desperate to get through days and weeks that contain hospital appointments and travel and other difficulties.

But here we are in July. My boy has almost completed an entire school year. How? When? Where did all those months go?

It’s flown by like no time at all. But then I look at him and I barely recognise him from the boy I put on the bus sobbing last September. We both cried so hard on that first day.

He’s so confident now, so happy.

His speech has come on astoundingly. He is so close to his non deaf peers now and can communicate easily with them.

His signing has improved and is so flowing and casual now. He’s a beautiful BSL user.

He is reaching and exceeding targets in numeracy and literacy.

But I want to go back to the first thing. He is so confident and so happy.

The guilt of building a deaf baby crushed me for the first few years. And now, when I think about what school has given him, it’s hard for me not to crumble completely.

At home with me, he was frustrated, let down, angry and difficult. You could see it in him and you could see it in me.

Just the first term at school was enough to change his behaviour. All of a sudden he was calmer. He could communicate, he was around peers and people who knew how to help him properly. People who knew better than his mother.

A whole year and you can see more of this. He’s a delight. That’s all his teacher said at his review, as she struggled to hold back tears. He’s kind and thoughtful and clever and helpful. He’s a delight.

I will never, ever be able to express how grateful I am to her and all the other staff at his school.

They’ve given me the boy I always knew he could be, I just didn’t have the skills to help him be.

I could feel guilty about this, and believe me I do. But, he is deaf and I am hearing. And that is forever going to leave me in deficit of how to be his mother. The difference between us is huge.

So instead of wallowing in guilt, I am celebrating how lucky we are. How lucky to live in London. How lucky we are to have a deaf school so close. How lucky we are to have gotten a place without a fight. How lucky we are that the school is phenomenal at what is does. So lucky that they rate kindness and wellbeing above all else, like we do.

So lucky that they’ve helped us be a happier family.

So lucky that they’ve made me see that in the end, he is going to be OK. That’s all I ever wanted. OK.

I don’t need a scientist, or a surgeon, or a superstar. I just want my son to be able to communicate so that he can have friends.

After one year at school he has the BEST friends. And he’s a delight.

And we are all very lucky.

Harriet and the arrogant surgeon

I have been feeling better.

Harriet is coming on so well. Her responses to sound are amazing.  She’s turning to her name and babbling constantly. She has very few actual words but she is trying very, very hard and really enjoys listening. She’s started dancing to music (Oh my heart) and asks to have her implants put in if they fall off or in the morning. She’s blown me away with her progress and how happy she is in herself.

Her balance has also improved. It improves every day. She still falls down a lot and is not where she was pre operation by any means, but she’s fearless and that is seeing that nothing stands in her way. She runs and jumps and climbs. And falls. And picks herself up and does it all again.  She’s a force to be reckoned with and I could not be prouder of her.

We went back to the hospital today for her 4 month check. We had audiology and a meeting with the surgeon. She performed beautifully in her audiology tests. She was so good and so consistent that they got a really good idea of what she can hear and what she needs. Superstar.

Then we saw the surgeon.

The surgeon I have made a formal complaint against because, at her one week check, when she could not stand, he told me that if he’d performed the surgery on me I’d be the same and refused to refer her for physio or occupational health. He made me feel like a hysterical mother and I have since proven that I was (and am) not.

I have been in talks with the divisional manager at the hospital and was expecting today to get an apology and an explanation for Harriet’s vestibular failure.

Pah!

The man is the most arrogant beast I have ever come across. Not once did he say sorry. His dialogue was that he disagreed with the balance specialist. That Harriet does not, in fact, have vestibular failure. That there is a normal curve of balance issues after cochlear implant surgery and that she is just unlucky enough to be at the far end of this.

So what do I do now?

Do I believe him, over the specialist balance doctor? Is he just covering his own back, so I don’t or can’t sue? Why aren’t all the doctors in the hospital on the same page?

He said that ‘bilateral vestibular failure’ was an emotive term for the doctor to use. What reason does she have to do anything other than make a scientific observation based on what she sees?

I think I would have more time and respect for his opinion if he could have found it in himself to say sorry for not taking me seriously last time we met.

Arrogance is a truly repulsive trait isn’t it? So disappointing in someone in such a position of power.

I don’t know how I feel now and I don’t know how I will feel as time goes on.

But I do know that my daughter is phenomenal. She’s taken all of this in her stride. She’s recovered with speed and grace. She’s re learned how to balance while learning how to hear, listen and interpret sounds. And she’s done all of it whilst being a beautiful and challenging two year old.

She’s already a much better and bigger person than her surgeon will ever be.

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Broken.

I feel broken. Beaten and broken.

I’m tired.

Harriet isn’t suffering. She’s amazing. She takes my breath away with how she is coping with everything. Her listening is coming on every day and she’s even starting to say some words. She’s an absolute star.

But she’s hard work. Physically. She stumbles a lot, staggers if she stands still. She zigzags when she does walk, sometimes frighteningly close to a road, or a ledge. If she spins around a lamppost her magnets come off and stick to it, sticking her to it. Funny, maybe to a passer by, but it makes my heart hurt so bad. So. Bad.

We’ve started the complaint process so hopefully soon we’ll have some answers. Maybe that will help me feel better. Maybe we’ll fight to get her some compensation. Not that there really is any for losing your entire vestibular system, for the rest of your life, in one swift movement.

I worry about her future. Not about now, because now I’m there with her. I will catch her before she falls into the road or off the ledge. I’ll hold her hand. I’ll pick her up. I’ll protect her.
But what about when I can’t? Or when she won’t let me? That’s when the ache really kicks in. When I think about her teenage years. When I think about my teenage years. All the stupid, stupid things I did. All the risks I took. How everything is so much more riskier for her. How we went ahead with implants to make those years easier. To alleviate the worry of her not hearing a fire alarm or not understanding someone and getting into danger. How we were trying to make her life better and we’ve only made it harder. How can I forgive myself for that? How can she forgive me? How can I expect her to?

How can it be that at every turn we take something else goes wrong?

I don’t know how I am supposed to keep going. I don’t have any fight left.

I’m beaten and broken.

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?

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.