Friendship 

I have spoken a lot before about the fears that rocketed to the front of my brain the moment Will was diagnosed. And about how, mostly they have been unfounded. 

He was recently on the BBC, with his friends from school, talking about how to behave around deaf people in order to make it easier for the deaf person to understand you and, more importantly, be included. 

There were some comments on the article that were hard to read. Comments that I shouldn’t have engaged with but I did. Comments that I, as a parent, have done a terrible thing having my children implanted without their express permission and am essentially undermining their deafness. Deafness, with a capital D. Denying them the right to be who they are. 

This week we made another short film, this time for Unicef, about children’s rights and my hopes for my children’s future. I didn’t get to say what I wanted to say because my amazing, talented, brave, clever children behaved like little shits the whole time. How hard is sitting on a sofa!? 

Anyway. I am going to say it here. 

For me, the most important thing in life is friendship. To be able to be a good friend to people. To be kind, empathetic, generous, understanding, gentle, encouraging, and loving. To have someone do the same for you. To be able to rely on someone, for them to be able to rely on you. 

I could not have survived adulthood without my friends. The past 7 years in particular have been very, very hard. There are people who have literally and metaphorically picked me up off the floor. People who have, genuinely, saved my life. 
This is what I want for my kids. That sort of friendship. Friends who can make you laugh, are excellent company, bring decent wine, take you on adventures, but ultimately, will bring you back from the edge. Because life is fucking horrendous at times. And that’s okay if you’ve got good friends. 

When Will was diagnosed I honestly thought he might never make friends. How could he? 

We made the decision to teach him sign language. And we made the decision to teach him speech. We made the decision to have him implanted. We made the decision to send him to a school that teaches both speech and sign. A school that promotes inclusion and acceptance, kindness and tolerance. A school that promotes the kids’ Deaf Identity, no matter how they choose to communicate. 

And here he has made friends. Deaf friends and hearing friends. 

But his school isn’t local. His friends aren’t local. And we don’t see any of them in the holidays. And this is hard for him. Which is hard for me. 

This past year I’ve seen a big change in Will. He’s started making friends in the park. He’s managed to confidently attend mainstream sports clubs. He’s comfortable enough with his deafness and his cochlear implants to answer questions about them. His identity is still wavering but it’s made a huge leap forward. 

And that makes me confident that we made the right decision implanting him. 

And that gives me hope that my one wish for his future can come true. 

And with one friendship it already has. His best friend moved to Denmark last summer and recently came back for a fortnight. I don’t think I saw Will the whole week they stayed here. They have so much fun together; can make each other properly belly laugh. They care for each other on a deep level.  They share a love of music and a love of football. They really are the best of friends, even after a year apart. 

My hope for Will is that he maintains this friendship, that they enter adulthood holding hands, even if it ends up being metaphorically. But if not, that he’s capable of forming similar bonds. That he is capable of offering support to someone and of them doing the same for him. That he learns to love and be loved. 

And that he doesn’t leave offensive, inflammatory and unnecessary comments on the internet. 

Sorry

I’m sorry. 

I’m sorry motherhood was such a shock.

I’m sorry I didn’t prepare for childbirth. And I’m sorry that it resulted in such a long and stressful birth for both of us that took so long to recover from. 

I’m sorry that I didn’t push for more help with your feeding. I’m sorry I didn’t act upon my gut instinct that you weren’t in pain. I’m sorry it took me 3 months to stop you starving. 

I’m sorry. So so sorry. So sorry that I didn’t give the hearing tests any credit. That I barrelled though test after test annoyed that they wanted you asleep without ever really considering that you might be deaf. I’m sorry that meant that when they did tell me I fell into a hundred pieces. There and then and for months after. 

I’m sorry that I didn’t put your hearing aids in very much. I’m sorry that I hated them so much, that I worried more about what they said about me than you. I’m sorry that I hated that you were deaf. I’m sorry I didn’t put your needs before my grief. 

I’m sorry that it took me so long to learn to sign. That I didn’t embrace who you are much sooner.

I’m sorry I didn’t force others to do the same. I’m sorry I didn’t fight your corner. I’m so sorry. 

I’m sorry I got pregnant so soon after you were born. And with a baby that was not strong enough. I’m sorry that grieving for her took me away from you. 

I’m sorry that Harriet is deaf too. Actually I’m not sorry about that. I’m grateful that you have each other. 

But I am sorry that having two deaf children in two years almost killed me. The learning curve was steep and I’m sorry that it didn’t come easier to me. 

I’m sorry that your time of most need came at the same as everyone else’s. I’m sorry that I was so stretched that instead of helping and comforting you, I pushed you away. I’m sorry that you had to go through that at all. I’m sorry that I didn’t fight for things that could have made it easier on you. 

I’m sorry that you see me at my worst. 

I’m sorry that I expect so much from you. 

I’m sorry that I’m forever telling you ‘in just a second…’

I’m so grateful for you. 

As you are. 

My wonderful, kind, empathetic, strong willed, intelligent, affectionate, talented boy. 

You are the best big brother your sisters could ask for, forever putting their needs before yours. 

You are a credit to the Deaf community and the hearing world. You straddle the two worlds with grace and pride. Your ability to switch between spoken English and BSL and even Sign Supported English depending on who you are talking to astounds me.

You made me a Mama and you made me the person I am today, beyond motherhood. 

I love you so much.

Happy Birthday. 

And I’m sorry. So sorry x

That mum

When Will was diagnosed as deaf, he was 6 months old. We’d gone through countless tests that he continued to fail and at no point did anyone say ‘he could be failing because he could be deaf’. They just kept saying ‘we still can’t get a positive result, we’ll have to try again’. 

So I never really contemplated it. How could it be? Why would it be? How could it be? It couldn’t. 

But then it was. 

Profoundly deaf in his left ear, moderately in his right. Hearing aids fitted. Speech and language therapy. A teacher of the deaf. Sign language. Special playgroups. An MRI scan. A kidney scan. An ECG. Blood tests. Hearing tests for us. Blood tests for us. 

Thrown into a distant and unexpected world. Far from where I wanted to be. 

I cried and I cried and I cried. 

Oh how I cried. 

How will he survive? How will he communicate? How will he make friends? How will be fall in love? How will he ever be independent?

How will he be happy? 

How. Will. He. Be. Happy?

Tomorrow he is being filmed by the BBC. 

 It’s a follow up to this http://www.bbc.co.uk/news/education-39274661 about how to talk to deaf people so they are included. 

He has three lines to say. To say. Three lines. To. Say. 

He has been chosen because his speech is excellent and he is a good example of what deaf children can achieve. 

All I want to do is go back to that mum. That mum standing in the waiting room of a hospital being told that life is more different than she knew it could be. That mum sobbing at the bus stop with a broken heart. That mum who cannot touch her babies ears anymore for fear of vomiting with raw emotion. 

And hold her. 

And tell her that it will be okay. It might even be more than okay. 

It will be hard. 

But you are strong.

And he stronger still. 

If you are at the beginning of anything unexpected, know that it is just that, the beginning. And that it will not always feel as raw as it does now. 

One day, it might even feel good. 

PTSD

The first time I had a panic attack was April last year. I think. I didn’t know at the time it was a panic attack so maybe I ‘d had them before but this is the first one that floored me.

We were in John Lewis, in Liverpool. I love John Lewis. We came to the kitchen section, my favourite section of any shop. I looked at the label for something and all of a sudden the letters started moving. Getting bigger and smaller. Swelling almost. I couldn’t breathe. I couldn’t really see. It was a claustrophobic feeling, as if the walls were closing in. I had no idea what was happening but I knew I needed to get out of there and fast.

As soon as I was out I knew. I knew what had triggered it and what it was all about.

The labels.

The John Lewis font has been the same for years. For as long as I can remember. The dark green. The lettering. So distinctive.

The last time I had been in a John Lewis was during Harriet’s first cochlear implant surgery, over two years prior. We had just got married. Harriet’s surgery was at UCH on Warren Street and lasted about 5 hours I think, maybe a bit less. We needed something to do during that time. After the hysterical tears of seeing your baby go under general anaesthetic (never gets any easier) and before the final hour or so of pacing and wondering why they haven’t called you yet.

So we went to John Lewis. Our wedding gift list had been there and we had some money in vouchers to spend. It seemed perfect. Distracting. Fun. But not too fun.

And it was. We bought pillows and duvet covers and a chopping board. A sieve and a boning knife.

Then we went back to our baby girl. Our baby girl who came round unable to hold her head up. Or support herself in any way. Who took months to relearn to walk. Who had been given the miracle of hearing but at the price of a vestibular system. Who had suffered a side affect that we had not been warned about. A side affect that impacts her daily life. That means she cannot do a lot of things. Some of which she really wants to be able to do. A side affect that the surgeon dismissed. A side affect that I had to fight to get recognised and treated and accommodated. A side affect that makes me wonder if hearing is really worth it.

I didn’t give John Lewis a second thought.

Until I was back there over two years later.

And my brain lost the plot. Freaked out.

Fight or Flight.

It’s what we do. No matter how advanced or evolved we think we are.

Fight or flight.

My brain remembered that last time we were in John Lewis my baby got hurt. Real bad. And I had to flee. I had to run. I could not let her get hurt again. I could not let that happen.

All of this inside my head and I didn’t even know.

The power of parenthood. You’ve got to keep on keeping on. Because who is going to do your job for you? Such a good thing. To have a reason to get out of bed in the morning. To keep you moving forward.

But it hides things. Leaves things undealt with. And they do return. Sometimes when you least expect it. Like in John Lewis. Your favourite place. That you now have to flee.

January 

January has not been kind to our family. For the past 7 years it has greeted us with some kind of trauma.

Two years ago Shaun, Will and Harriet were all in hospital. And I had an 8 week old baby. My world was quite genuinely falling down around me. Which, I think, is why when Harriet ended up back in hospital last year I found it incredibly, soul destroyingly hard. Because I’d done my bit. I’d suffered enough. She’d suffered enough. We’d planned a holiday to Eurodisney, leaving on New Years Day. Sticking our fingers up at 2015. Going into 2016 strong. And by the 2nd we were in A&E back in London. For fucks sake. It felt like the universe was making a point. Like it was saying ‘who do you think you are? What makes you think you can celebrate? This is January my friend. January. Get back in your place’. 

So now it is January again. Predictably. And I am mental. Not like a bit down, or a bit worried. Bat shit off the chart crazy. We have gotten to day 10 and so far, so, far, we’re alright. And I think I’m fine. But then someone slips. Shaun is 2 minutes later than I expect him. A kid wobbles on the stairs. Someone says something aches. And I’m there. I’m freaking off the scale panicking. I can’t breathe. Tears are rolling down my cheeks. I’ve already envisioned how this is going to pan out. 

But then they get up or come home or are comforted with a biscuit and I feel like a fool. Like a crazy ass fool. Which makes me even more mental.

Because I am a logical person. A sensible person. I am not superstitious. I do not believe in fate or luck. I believe in hard work and strength and kindness. 

But January. January has been cruel. And so I have learnt to expect cruelness. 

I have blisters on my fingers. Stress. I have spots. Stress. I am running to much. To get away from stress. Drinking too much. Drowning stress. 

What can I do? 

This is post traumatic stress. Learned behaviour. Barriers. Protection. Fear. Panic. 

What can I do? 

Ride it out. Head down. Breathe. Swear. Talk. Run. Walk. Blog.

January has come again. But just as certainly it will leave. Hopefully with less scars. 

Banarina

I love language. That’s why I write a blog. I love writing. I love words.

One of my favourite things is to play with words. To make up new words. To mix languages. To experiment with words. When Will was a baby we called him Williphant because he had a vest with an Elephant on it. Harriet was Haribo, Habanero, Habs, Harripottomus. Sadie is Sadiekins or Sades McGades. Always playing with words and sounds.

Predictably, one of the hardest things about having deaf infants was that I was told to stunt this. Will called my mum Ga Ga which I loved but we couldn’t let it slide because he was likely never to learn proper words unless we didn’t just use them but forced and enforced them. GRANNY. No fun to be had here friend. I felt like they missed out on a lot and this was just one more thing, fun with words was not going to be part of their lives.

But now we are now. And Will is implanted, and in year 1, and doing really, really well.

And the other night this happened

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It’s a ‘Banerina, a banana ballerina’ and he laughed so so hard at his own clever joke.

My heart swells to think about it. That he can play with words. That his understanding is at that level. But more than that, that he wants to play with words.

Other than the crippling guilt, the strongest feeling I’ve had over the years is that I am not equipped to raise deaf children. That I do not know how. That the problem is not so much that they are deaf but that I am hearing. How can I change my ways enough in order to be the best mum for them? How can I deal with our entire families not being able to communicate with them, or more so, to support me because they know no more than I do. When you have children you look to your parents because they have been here before. Not ours. I felt alone on this ridiculously hard journey. Raising kids innately different from myself.

But, turns out, some genes are stronger than others. Super strong in fact. Will has my love of language, despite the fact that he, in another time, may never have heard any.

Or maybe it’s nurture. Maybe I didn’t stop all linguistic games like I was supposed to. Maybe he’s learned to love language.

Either way, the Banerina made my heart soar. And it’s those moments that keep us going.

Mountains

I think the last blog I posted was about how little I liked my own son. It makes me feel sick just to think about it. How could I have said that out loud? More so, how could I have felt that way? How could it come to that?

He’s wonderful.

He’s bright. So bright. Bright in the clever way but also bright in the beaming with smiles and brightening up any room he walks into, any person he encounters.

He’s happy.

He’s an absolute frigging dream.

I adore him.

He’s happy.

He is a different child to the one he was 3 months ago. As you would expect I imagine. Maybe if you are detached from it all you could see that. Maybe you knew it would all be okay. I didn’t. I hated every second that he was profoundly deaf. And so did he. And he let that be known.

His speech is amazing. His listening is amazing. He is blowing everyone away.

His teacher told me the other day that he was a mere smidge away from achieving the national average for numeracy and literacy. That’s for hearing children.

For hearing children. This kid couldn’t hear for a whole term. He didn’t talk. For a whole term. And he still very nearly achieved what a regular kid did.

Because he’s not a regular kid. Let me tell you, he is the furthest from regular you’ll find.

He’s a freaking superstar.

And he’s mine.

And I’m so proud I could burst.

He’ll move mountains that kid.

He already has.

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