A small but significant win.

Today my anxiety levels are high. I am stressed and tired and teary.

Our morning was rushed because I couldn’t drag myself out of bed which meant I shouted at the (deaf) kids. Then at breakfast William said to me ‘Mummy? Mummy. No shouting. No shouting Mummy’.

You know what that means? That means someone at school has said that to him. That means he’s been shouting at school. That means I really, really, really have to stop shouting. Cue more unbearable pressure on daily life.

He has cried so hard on the bus every morning this week. We have started every day in tears, both of us. The guilt, the pressure, the anxiety. All. Too. Much.

Harriet and I went to deaf playgroup. I LOVE deaf playgroup. There was a time when I hated it, hated having to be there at all. But it has become somewhat of a sanctuary for me. It’s calm and friendly and everyone there is the same as me. I don’t stand out. My kids don’t stand out.

It was quiet today, only three kids and we had plenty of time to talk. The staff gushed some more over our wedding, we talked more about Harriet’s impending operation, about William getting on a school.

All of it. All. Of. It. Was in sign language.

The teacher of the deaf said to me “I’ve never seen you sign before, you’re a natural. Have you had proper lessons? (I haven’t) Do you have qualifications? (I don’t) You flow so smoothly”.

The speech and language therapist said to me “you’re such an inspiration. It’s so good for all these Mums of newly diagnosed children to see you. You’re such a positive role model”. She even shed a tear!

And there, all of a sudden, I was winning.

I’m still an anxious, guilt ridden, shouty Mum. But, I’m one that’s pretty good at sign language. And that has pretty much made my week.

Doubt

You know how whenever you book a hair cut your hair goes all awesome and easy and you start doubting whether or not you actually want it cut?

It’s like that. Except it’s not my hair, it’s my daughter.

Harriet’s cochlear implants are scheduled for January 31st. We found out just before Christmas and I thought I could put it to one side for the fortnight we were away getting married. I managed the first week. But as soon as the wedding was over it crept in, every day. And since we’ve been home it’s consumed me more and more. I am horrible to be around. I am crabby, short tempered, shouty and mean.

Harriet, however, is awesome. She is so very clever. And so very funny. And so very sweet. And cute. And fun to be around. She’s awesome and she’s easy.

And I am almost certainly certain that we are doing the right thing. Giving her the choice. Giving her the option to hear and to talk. Maximising her chances of a happy, successful, fulfilling life.

But she’s so happy right now. And so perfect. And I’m changing her forever.

And, unlike my hair, her natural hearing (minimal as it is) will never grow back.

2013

2013. I cannot believe it has come and gone already. It’s been another ‘challenging’ year but one I am totally ending on a high… Not least because I get married in 4 days!!!!

William has been in full time school since September. And I mean FULL TIME. I put him on a special needs bus at 8.20am and he gets home at 4.20pm. My baby is gone all day long. This has taken a lot of getting used to for both of us and at times I have wondered whether we are doing the right thing. But now, a whole term has passed I am confident we are.
His language has SKYROCKETED. He is amazing. Every day he comes out with new words and phrases. He is funny, he is confident and he is oh so clever. I feel like school, by enabling his communication, has let him really grow into who is really is. Of course, this comes with a whole heap of guilt that I couldn’t do that etc etc but I am willing to shelve that to enjoy this wonderful little boy my son is growing into.
My H is a menace. She is hurtling towards those terrible twos with speed. She is just as headstrong as her brother and just as stubborn with it. She’s amazing. Her signing is the most beautiful thing to watch. I am filled with pride that, by the time she came along, I had decent signing skills and that I have been able to progress alongside her. She has not been stilted by me, at least to the extent Will was, as so is already confident and has an amazing sense of humour.
She’s booked in to have cochlear implants on January 31st. I am so scared and so excited for all of us.

For the past few months, I have felt, for the first time in a long time, happy. That day to day contentment. It took me by surprise after years of intermittent stress and anxiety (which still make an appearance, naturally). It could be because William is at school and it’s easier without him at home (insert more guilt here). But I think that, as well as that, it’s because we haven’t been at the hospital. Since the cochlear implant assessment was finished in July, we’ve hardly been. It’s amazing the stress that all of that caused. Going into 2014 and Harriet’s operation I am fully aware that we will be back in weekly appointments and the anxiety will return.

Until then though, I am going to enjoy Christmas, my wedding and drinking in the new year. I feel like I am going in to next year confident and happy, and really bloody proud of the four of us not only surviving another year, but coming out of it happy and in love.

So 2014, bring it.

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Divided.

So. We are cochlear implants a go-go. For Harriet. In January.

I felt nothing when they confirmed it. I was having a good week, was feeling strong and happy. We had expected them to say that. So it wasn’t really news.

The worst bit was when the surgeon said “I want to use the somethingorother implant because the coil itself, that goes into the cochlear, is soft. That means there is less drilling on her skull.”

I wanted to vomit. I want to vomit now just thinking about it.

It’s so hard being a parent, when what’s best for your child conflicts with what’s best for your child.

She needs implants. I want her to have implants. It’s what’s best.

But drilling in to her effing skull.

How can that be what’s best?

I am having similar emotions with Will being at school. He’s so tired. And he cries so hard every morning when I put him on the bus. He holds on to both my hands so tight and begs me to stay at home.

My freaking heart starts every day in two.

But it’s what’s best. His language is coming on. I know that he loves it there, that he’s making friends, that he adores his teacher.

But he’s only 3. And he’s gone for 8 hours of the day. He’s my baby. And he has black bags under his eyes. He’s only 3.

Hopefully in 5, 10, 20 years I will know that I did what was best. That, although hard, in the choices between what’s best and what’s better, I made the right call.

But right now I’m being torn in two. And it hurts so bad.

Only boring people get bored

Last weekend, at a soft play birthday party, we met a deaf family. The mother noticed Harriet’s hearing aids and asked me in sign language if she was deaf and if I am deaf. I explained to her that I wasn’t. She said that her mum was hearing and that she was the first deaf child in her family. We had a whole conversation about the kids, will’s school and other bits and pieces. All in sign language.

When we left, I realised it was the first time I’d come upon a deaf situation like that and not walked away wanting to drown myself in gin. It was fine. I didn’t feel happy, or proud of my signing, or like I’d achieved anything. But I felt fine. And that’s a bloody long way from how I would have felt a year or two ago.

When relaying this story to someone they said to me “I know you think it’s hard but you’re just at home and you’d be bored. It’s a challenge and the bigger the challenge, the greater the reward. And you’ve really achieved so much.”

The last sentence is, I think, what they meant to say. Because the first bit basically says “it’s good your kids turned out deaf because otherwise you’d be bored”. Which is a shocking thing to say.

I can guarantee that if my kids could hear that I would not be wishing they were deaf (or disabled in any other way) so I had more to do. And I can guarantee that there are stay at home mothers all over the world that are bored and that none of them wish their kids were disabled.

I one hundred percent, totally and utterly, with all my heart wish that my children could hear naturally. For them. For their future. For their ambitions and dreams.

Because it is their lives that will ultimately be affected by them being deaf. Not mine. They will have far more challenges to rise to than me. They will never be bored.

And I am certain that they will rise to them, conquer them, and be rewarded. Just like I have mine.

And, if I do my job properly, and rise to the biggest challenge of all, they won’t wish they they weren’t deaf. They will embrace everything about themselves and they will conquer the world.

And only then will I feel better than fine.

And until then I certainly won’t be bored.

Am I supposed to be grateful for that?

It’s not you, it’s me

I adore our sign language teacher. She has been the one consistent person in our deaf team since the very beginning. She has made me tea while I sobbed on my sofa. She has told me about her husbands heart attack. She taught me the signs for ‘sore’ and ‘careful’ when Shaun had cancer. She has seen me develop from a ball of heartache and confusion into a capable, bilingual mother of two deaf children.

She’s gentle and kind and wonderful.

And she’s deaf.

Her husband is deaf, she has two deaf daughters and she recently had her first (deaf) granddaughter.

Deaf is their world.

It struck me when the granddaughter was born. The mother was not crying. She did not look haggered. She was glowing, and beautiful. There was nothing wrong with her daughter. She was the same as her parents and the same as her grandparents.

And there lies the crux of it. It’s not because my children are deaf that I struggle so hard. It’s because I am not.

It’s a different world, the one where one cannot hear. It’s no better, or worse, than the hearing world. Smaller, maybe.

I don’t know how to raise my own children.

I’ll never understand what it’s like to be them. Much more so than a generational divide, or a cultural one. I am their mother, I’m supposed to know what’s best. But how can I? When I’ll never know how it feels to be deaf. They are growing up into a world that I know nothing about. Nothing.

I’m letting them down right from the very beginning.

A commune

I live in London. I love living in London. It’s a beautiful, brilliant city and the best place for my children to be.

I also live in a commune. What? You didn’t know London was a commune? Well, neither did I. But it is.

We are all here, us Londoners, together, raising our families as one. We help each other. No wait, we don’t help each other, we judge each other. We help each other by judging each other. I think. That’s how it would seem.

I have taken Will to school, across London, on two different buses, with a total travel time of 75 minutes, for 2 out of his 4 days so far. Both days, people have offered me ‘advice’. The first day was when somebody tapped me on the shoulder to tell me that the sun was in my babies eyes and that it was ‘driving him mad’. I had no idea that I could move the sun. Because, on a packed bus where the over tired baby needed to be in her pushchair, that was the only thing I could have done to help the situation. Thank goodness that kind lady told me to do so.

On the second day, our second bus was not due for 16 minutes and Will had to be in school in 20. So I was frantically using Google and tfl, on my phone, to try and figure out what other options I had. As I was doing so Harriet was pulling out (and apart) her hearing aids. And William was blowing raspberries at people as they walked past. Luckily, a kind lady came and told me that his behaviour was wrong and that he shouldn’t be doing that. I had so much free time on my hands I’d completely forgotten I was raising the future of tomorrow and that raspberries would cause another world war.

And then there was the lady that, as William suffered a major tantrum over something little due to exhaustion at his first week at deaf school because he is only 3, told him that he needed ‘a right good hiding’. I don’t know what I would have done without that advice and I, of course, heeded it immediately.*

And the people who continually ask me where my children’s coats / shoes / socks / hats / manners are.

Because raising a child is difficult. Raising a child in the city is difficult. And raising a child with a disability is difficult.

But living in a commune makes things easier. Because these people mean well, you see, and they genuinely think they are helping me to a better job raising our country’s future.

Wankers.

*I didn’t.

**There are actually lots of very nice and very helpful people in London and I do genuinely love living here**