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

image

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.

image

The end of the tunnel

I have tried to write a post about William so many times in the past couple of months. But how do you write that you don’t like your own child? How do you write that you can’t be in the same room as him? That you dread the weekends. That you long for Monday morning, sigh heavily as 4 o’clock rolls around all too soon. How do you tell the world that you’re failing as a mum, more than you ever have before, because you don’t even like your own first born?

Since he fell over and lost his hearing I have found him, and our relationship incredibly challenging. He was obviously very very scared and isolated and confused and, crikey it kills me just to think about it. But he was horrible. He was aggressive and violent and rude and mean.

His sign language skills are not as good as his speech. So while I was able to sign to him, he didn’t always understand me. He would talk to me but his speech got more and more slurred and I could barely understand him at times. It was frustrating for both of us. I am the only person in our immediate circle outside of school that can sign so all communication fell to me. I became his translator. It was exhausting. You cannot do anything at the same time as signing. I had to put the baby down and try and hear Will’s distorted speech through her tears. I had to ignore Harriet talking and signing to me. It’s difficult to hear two people talking over one another, it is impossible to watch two people signing simultaneously. I had to stop cooking dinner to communicate with him. Stop in the street any time he wanted to talk because I needed my hands to sign and I didn’t want him walking without holding my hand because he can’t hear me shout if he nears danger. It took forever to get anywhere, to do anything.
When I wasn’t with him I could reason. I could see that he felt awful. That he was scared and lonely and frustrated. That this explained his behaviour and that all be needed was time and love. But when I was with him and he was spitting at me or shouting at me or deliberately hurting Harriet I struggled to keep on top of my emotions. I lost my temper. Too. Many. Times.

By the time switch on came round last week I was at the end of my tether. I didn’t know what to do with him. I didn’t know how to be his mum. I was all he needed and I didn’t know how to be that person.

I guess it was my old friend guilt. Guilt that he’s deaf in the first place. Guilt that I didn’t push harder for him to have his left ear implanted last year. Guilt that I hadn’t learn sign language sooner, hadn’t taught him sign language sooner, that I hadn’t given him the skills to be the deaf person that he is. I had let him down. He hated me for that and I could feel it radiating out of him. He so desperately wanted me to help him, to make it better but it was too late.

Switch on was underwhelming at best. There was no miraculous ‘I can hear again’ moment. He was reluctant to wear his implants and I felt like we had yet more months of attitude and frustration, for both of us.

It’s been a week. He doesn’t turn if you call his name. He doesn’t understand if you ask him to take his shoes off, put his coat away. But he can count drum beats under a table. He can differentiate between ‘ah’ and ‘shhh’ said behind a screen. He wears both implants almost all of the time.

And he is happy. He is calmer. He is polite. He is sweet. He is friendly. The change is amazing. I can hardly believe it. And so soon. He is the boy I know. The boy I love so hard with all of my heart. I thought I’d lost him.

He has laughed more in the past week than in the past two months. The atmosphere across the house, across the family is lighter, lovelier.

I am so happy for him that he can hear again. So happy that he’s no longer in the silent, scary world that made him so difficult to be around.

But it shouldn’t have been scary. He shouldn’t have felt isolated. He is deaf. He has always been deaf and I should have worked harder to make sure he was able to be deaf. It’s not easy stepping out of the hearing world I am used to and he was very very good at utilising the sound he did have access to through his hearing aid. But these are not good enough excuses. When those implants come off, or fail,  or he chooses not to wear them, he is deaf and he needs to be able to function.

It’s all too easy, now that he can hear, to forget that and to do what is easy. To be selfish. But I don’t want to do that. Because I don’t ever want to live through the past two months again. I’ve got my boy back, and I’m never letting him go.