Bullshit

We weren’t poor growing up, but we didn’t have a lot either and my mum always said ‘it doesn’t matter as long as you have your health’. She’s right. Having a big house, or a car, or fancy holidays; they don’t make real problems easier.

My kids have their health, more or less. They are deaf. Profoundly, now. And there are concerns over their thyroid function as that’s something else that can be affected by the syndrome that they have. But, overall, they have their health. And I guess for that we are lucky.

But I don’t feel lucky. And I am fed up of being told how lucky I am and how lucky I should feel. I am fed up of being told that I should be grateful that they aren’t more disabled.

What is that? It’s bullshit.

Don’t try and make it better. Don’t try and make me feel better. Don’t compare me to people who are worse off and think that will help. It’s bullshit.

I don’t know how any of this happened. It just all feels so utterly ridiculous.

I remember when I fell pregnant with Will. I remember how happy we were. How happy my family were. How shocked Shaun’s family were. I remember what I worried about – the sleepless nights, breastfeeding, the right pushchair, whether it would be cursed with the reflux that still haunts my mother in law to this day.

That’s all bullshit.

Because my kids have actual problems. Problems that will affect every single part of their lives for all of their lives. Problems that mean I have no idea how to be their mum. Problems that put me so utterly out of my depth I feel like I’m gasping for air.

So don’t tell me I’m lucky. Don’t tell me that it could be worse. Because, although true, that’s not what matters. What matters is this is happening to us, now and we are scared and alone and angry.

Why me? Why my kids? Why us? It’s all bullshit.

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Expect the unexpected

Today we had a consultation with our kids’ doctor. We haven’t had one for a while and I think we all knew what to expect.

Harriet’s latest hearing tests have confirmed the ones she had at 5 weeks old – she is profoundly deaf. This means she can hear very, very little without her hearing aids and even with them in she cannot hear enough to access speech. It’s a complicated diagram of pitches, frequencies and volume but the essence is this: if we want her to ever talk, she will need cochlear implants. A major operation that carries risks. But will mean she can hear. As a hearing family we have always said that if that’s what it takes then that is what we will do. And so her journey to sound begins.

And then came the news we didn’t expect. William’s hearing has deteriorated. His left ear is profoundly deaf. His right is not what it once was. He is on the borderline of profoundly deaf there too. His speech is not progressing at the speed and level that one would expect or want. He too is being referred for cochlear implants.

Two kids. Two major operations. Two life changing opportunities. A few fucking scary months ahead.

My main thought? I just hope it’s all done by Christmas so they can hear me tell their Dad how much I love him at our wedding.

Suffocation

I have always hated speech and language therapy for my kids. It’s hard and it hurts (me) and I am always exhausted and upset after it. The therapist pushes the kids and pushes me to push the kids. It’s how they learn, apparently. But I hate it. Hate, hate, hate it.

Recently I had a session that ruined me slightly (massively).

“You have to sign and say EVERYTHING you do. Pretend you are a radio commentator. Describe every movement. Tell her exactly what you are doing. ALL THE TIME.

No, don’t answer the phone. Look at her, tell her the phone is ringing, sign phone to her, tell her where you are going. Get up, bring the phone to her, put it to her ear, let her hear the ring, tell her that it’s ringing. Then you can answer it.

Let’s run a bath. No, don’t run it when the kids are eating or watching TV. Stop! You can’t just walk up the stairs. Wait at the bottom, tell her where you are going. Sign stairs. Sign up. Sign bath. OK. Now go up the stairs, saying and signing up as you go. Take them both into the bathroom. Point at the taps, say taps, sign taps. Turn them on, turn turn turn. Say it, sign it. Say hot, sign hot, say cold, sign cold. Say water. Sign water. Do this for the entire 15 minutes it takes to run a bath.

Make food times about language. Eat together. Don’t just lift your fork to your mouth, put it down. Sign fork, sign food, sign nice. Smile. Maintain her attention. She won’t take her hearing aids out if she’s distracted. Keep her distracted”

And so on.

I want to try hard to teach my children.
I want to give them the best chance at life, at communication and at speech.

But sometimes, sometimes, I just have to have the space to breathe. To just pretend, for just a second, that our lives are not utterly about communication. That we are normal.

Fucking hate speech and language therapy.

A different, silent world

It is becoming increasingly apparent to me how different my children are. How different our journey is. How different my journey is.

I always wanted to be a mum. I imagined it, planned it, decided how it would be.

The double deaf diagnosis has upset this more than I knew.

William’s friends are all talking in sentences, in tenses. They can do funny voices, accents. He says his broken, distorted words to them and they look at him blankly. Thankfully he is yet to notice. Their parents are constant in their amusing anecdotes of what so-and-so said. All I can do is listen, smile, and try and hide the heart break in my eyes. 

William starts school after half term. SCHOOL!! Deaf school. It’s our choice and it’s the right one. He has been receiving his 15 free hours at nursery since he was 2 and a half because he is ‘special needs’. He is at a very sought after nursery in our area. People often ask how we got him in. When I explain they say ‘oh you’re lucky’. Sure. Lucky.

So he is starting school. When everyone else is starting nursery. The conversations in the playground are about where children are getting in to, where children are being rejected for. I don’t know anything about how to apply for a nursery place, for a school place. Someone else does it all for me. Someone on the special needs board.

And it goes further than school. It goes all the way into adulthood. I have begun to realise, alongside how different our journey is, how alone we are on taking it.

I had strong ideas about what my parents did right as parents, and what they did wrong. I felt the same about my in-laws. I planned to strike the perfect balance. But it’s all irrelevant. They didn’t raise deaf kids. They didn’t learn a new language. If there child was naughty while they held them, they could tell them off. They wouldn’t have had to put them down, try and force the child to maintain eye contact and sign, in pigeon BSL, not to do that again. What I wouldn’t give to be able to shout at my children without that pounding feeling of guilt throbbing through me laughing ‘you are shouting at a deaf child you fool, deaf’.

I always worried about having a daughter; about how to raise her with self esteem higher than mine; about how to teach her to believe in herself; how to create an innate belief that she is beautiful. This feels like an even steeper uphill challenge now that she will have giant pieces of metal stuck to the side of her head. And because she can’t hear me tell her, a million times a day, how very and completely beautiful she is.

Will they make friends? Fall in love? Will I have grandchildren? Will they be deaf too?

How will I help Harriet be a mum? William be a Dad? How will they hear their babies cry?

If they manage children, will their grandchildren be deaf? Will we go from a little family, isolated in our own, wider family because our world is so different, to generations of deafies? Is this the turning point? Am I the first and last one to feel like my journey is so different from everyone around me?