Tuesday, 4 December 2012

New home

Hi!
 
We moved over here http://mydeafchef.wordpress.com/

Come say hi back.

xx

Wednesday, 3 October 2012

William the Conqueror

We are three days into nursery and Will is LOVING it.

My emotions are ridiculous. Every day I have left him he has hugged me, waved goodbye and not seemed bothered at all by my departure. Which is what I would want, you would think. And it is. And I am happy. Except for this small (large) part of me that wants him to be sad to see me go, wants him to miss me as much as I miss him.

But I didn't have children to keep them at home with me forever. I didn't have children for them to miss me. I had children for them to go out and conquer the world, starting with conquering 3 mornings a week at a nursery close to home.


Friday, 28 September 2012

There is no such thing as too tired for ice cream

video video

All grown up

My baby starts nursery on Monday.

I am sure I don't need to tell you how I am feeling about this. He is my baby. 


We have been leading up to this day for what feels like forever and I think I am as prepared as I can be. I am almost, almost, looking forward to it. I know that he will love it and I know that it will do him a world of good. And I know that I am in the minority of Mums having had him all to myself for a whole two and a half years so I should be grateful I didn't have to do this sooner.

The nursery is a 10 minute walk from the house. He's not even there every day, just three days a week. And even then it's only the mornings. Three mornings a week. And he's two and a half. He needs it. And I need it.

But.

But he's my baby.

Wednesday, 26 September 2012

The day he said no

My William amazes me on a daily basis. As you all know he has been in and out of doctors offices and hospitals since he was a few weeks old. He has been prodded and poked and pestered. And he has always complied. He sits on my knee peacefully. He raises his shirt before the doctor has got the stethoscope into their ears. He takes out his hearing aids as soon as he sees the otoscope. He turns his head once one ear is done. And remember the blood test? Oh my heart.

Each and every appointment we have, I come away feeling proud to have such a good, patient patient.

But today was different.

Today he didn't want the wires in his ears. Today he didn't want to play the game. He didn't want to sit on his own and he didn't want to sit on my knee. He didn't want to listen.

And he made this all very clear.

So today I left the hospital exhausted. More exhausted that normal but also much more proud than normal too. I didn't even know it was possible but it's true.

Good on him for saying no. I am so proud that on today, when he was more tired than usual and was fed up of being tested, he let us all know. It's such a draining process for all of us and each and every time I want to scream and shout "NO". I want to stamp my feet and cry and get up off the chair and leave. I don't because I am a grown up and normally his behaviour would make you think he is a grown up too.

But today he acted like a child.

And I love him all the more for it. 

Wednesday, 15 August 2012

18 again. Again.

Way back in January I guest posted on Chosen Chaos with a letter to my 18 year old self. Now Jamie has got together everyone that did the same in one awesome party. Click on the link to come and join in. Bring a bottle!

Before you go, have a read of what I would say to my 18 year old self and have a think what you would say to yours...

Photobucket

Hey.
There are a few things that I would like you to fig­ure out sooner than you end up doing so lis­ten hard please.

No seri­ously, put the beer down, pay attention. Your body is amaz­ing. It is going to build actual peo­ple. Actual, liv­ing, think­ing, feel­ing, won­der­ful peo­ple. And then it is going to feed them so they grow big and strong and loved. AM-AZ-ING. Sure it doesn’t do the best job in the world, it misses some bits off but that makes those peo­ple more spe­cial, not you any less spe­cial, although it will take you a while to fig­ure that out too. My point is don’t give it such a hard time because it isn’t exactly how you would like it to be. Your thighs are not the size of a rhi­nos and the size of your boobs is not as impor­tant as you think right now. The fact that they can sus­tain life - that is what is impor­tant. In about 2 years time your obses­sion with your weight and diet­ing and try­ing to look like what really would only resem­ble a stick is going to come to a head. It’s going to be messy. There are going to be tears and drama and drugs and pro­fes­sion­als and rela­tion­ship break­downs that will never recover. Phys­i­cally you will get over it but emo­tion­ally not so much. So how about we just skip that bit and start appre­ci­at­ing your body now? Yeah? Cool, OK.

Men. They won’t make you feel bet­ter about your­self. Stop pick­ing ones you know you can’t have. I know that you think it is eas­ier to be in these casual, fleet­ing rela­tion­ships. But you are wrong friend, wrong. Have some respect for your­self please and move on when you realise they are no good, don’t try and change them or help them, or worse, per­suade them that they are inter­ested. They are not worth your time, energy and tears. One day, when you think you will be left on the shelf for­ever (ridicu­lous at 24!) you will meet some­one that won’t let you off with a casual rela­tion­ship. Some­one who stalks you until you agree to go on a date (sounds scarier than it is, there is this web­site called Face­book that has some­how made stalk­ing not only OK, but pretty stan­dard — weird I know, but what can I say, the world changes in the next 10 years). Someone that gen­uinely likes you for who you are. Some­one who can see all the things you can’t. Some­one whose favourite thing about you is how much you can make him laugh, not how skinny or suc­cess­ful or drunk you are. Some­one that will turn out to be your soul mate. Yes, yes, I know you don’t believe in all that ‘the one’ non­sense, I am still scep­ti­cal myself but hon­estly — you are won­der­ful together, I don’t see how any­one else could fit so per­fectly with you. So now you know he’s com­ing, just wait patiently right? Avoid all those other jok­ers and in turn avoid all that heartache.

So that’s what you do wrong but now we have sorted those let’s talk about what you did right.

Travel. Do it. Leave home, go to the other side of the world. Then go back and then go away again. The expe­ri­ences you will have won’t all be good but the lessons you learn will be and the friend­ships you make, even the ones that don’t last will stay with you for­ever. And it comes in handy when you meet that man we were talk­ing about — he’s not exactly a small town guy. Or a one town guy. You’ll see.

Go to school, to 6th form and to uni­ver­sity and get your­self an edu­ca­tion. The qual­i­fi­ca­tions them­selves will mean lit­tle in the end mainly because you make a ter­ri­ble choice of what to study for your degree but you know what? You get that 2:1 so it’s not all bad. And as you always said, it was too much to ask you to make that deci­sion at 18. The peo­ple you meet and the expe­ri­ences you have make it all worth­while. Friends for life every­one said before you went and they were right.

Love, laugh, drink and be merry. Cry, learn, grow. Be strong, be weak. Be a good friend. Be your­self. Don’t be ashamed or afraid.

So there you go. In the next 10 years you are going to expe­ri­ence highs higher than you ever knew pos­si­ble and lows like you would not believe but that’s adult­hood for you. You are going to learn some hard lessons so it would make life eas­ier if you just got those first two I men­tioned out the way. But remem­ber this — you are lucky. You are lucky to have a body that works and is healthy. You are lucky to be able to travel around half the world and see the things you get to see. You are lucky to have the oppor­tu­ni­ties you have had and will have. You are lucky to fall in love with some­one so amaz­ing and be able to have chil­dren. Some­times you lose sight of this, try not to.

One last thing — when you go out tonight, how about doing just the one shot of sam­bucca instead of 6? No? OK, well don’t say I didn’t warn you, tomor­row is going to hurt.



Saturday, 4 August 2012

Birth Story

When I had Will, my first born, I went into hospital on a Friday night after having contractions since the Thursday morning. They were close together and I was struggling with the pain. I was only 2 centimetres dilated. I started off in the birth centre but was moved to the labour ward when his heart rate dropped. Over the following 24 hours his heart stopped three times. I had two epidurals, my waters were broken for me, I was continually monitored, put on a syntocin drip to speed things up and ended up having an episiotomy and he was dragged out of me using a ventouse. He was fine and I was fine but it was a traumatic start to parenting, not least for my partner, Shaun who had felt utterly helpless watching it all happen. So, when we fell pregnant again the birth was a huge mental barrier for both of us.
 
Harriet's birth, however, was a glorious experience for both of us. It could not have been more different to Will's and I am certain it is because we did a course in Hypnobirthing. Hynpobirthing meant that we worked as a couple throughout the pregnancy to connect with each other and the baby. We dealt with our anxieties about the birth and felt like a team going in to it. Contractions started at 5.30am on a Wednesday. I had had some contractions on the Monday that had disappeared after a few hours, was expecting the same to happen again and so sent Shaun off to work and went about our normal day. When Will went down for his midday nap I settled into bed to do the same. I listened to my hypnobirthing and managed to drift off. After 20 minutes my contractions woke me up and I knew if I couldn't sleep through them then things must be progressing. I called Shaun and told him not to rush home but not to be home late. We spent the afternoon at the Banc with some Mums who were due around the same time as me. Having Will to chase after was a welcome distraction! When we were putting Will to bed at around 7.30pm I was having to hold onto the new babies cot to steady myself through the contractions but was still managing the pain well. I cooked and ate a massive roast dinner and sat down to watch One Born Every Minute! I very soon realised that I couldn't concentrate on TV and went and ran a bath. In the bath I read my affirmations and tried to concentrate on the breathing techniques we had learnt. I was in the bath an hour or so and Shaun was keen for us to get to the hospital. I was coping well with the pain and was so desperate to avoid being told I was only a few centimetres dilated again, I wanted to stay at home. Shaun was reading the Hypnobirthing book and said that I would know when the time to go to hospital was. I scoffed at this because I had got it so wrong last time and didn't understand how I would know. Then something happened. All of a sudden I knew. I had to get out the bath and we had to get to the hospital. The breathing techniques and affirmations were no longer working. We called a friend to come and stay to watch Will and then called a taxi. The poor taxi driver. I had my head out the window like a puppy and was screaming profanities with every contraction. Between them I kept reminding myself to apologise to him but then another one would come and I would be off again. He wouldn't drive through the barrier at The Whittington and so I had to walk through the car park. It took me 4 contractions and then another 3 to get down to the birth centre. By chance the midwife on duty was the same one that had delivered Will. She rushed us into a room and said she needed to examine me before I could have any of the drugs I was begging her for. I had an overwhelming urge to hold onto Shaun's shoulders and sort of hang off him and as I did my waters broke. The midwife managed to get me onto the bed, examined me and said "Alison, you are fully dilated, all you need to do is push". They are the best words I have ever heard. I wanted her to say it over and over again! I had some gas and air to help with the contractions but it meant I no longer had the urge to push and so after a minute or two they took it off me. It took four pushes to get her head out and just one to get out her body. She was 10lbs and I gave birth with no drugs and no stitches. It was the most painful thing I have ever experienced but the most exhilarating and wonderful too. I have nothing but positive memories from it. 

Wednesday, 11 July 2012

Holland

A few weeks ago I stumbled across this fantastic blog https://alicesears.wordpress.com/ written from the perspective of parents in a very similar situation to ourselves. Through that blog I found this wonderful piece of literature...

WELCOME TO HOLLAND

by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
 "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


Isn't it wonderful? I wish I had written it myself. I feel like with Will we are in Holland, we are noticing the tulips and the windmills and we are beginning to see Rembrandts in our future. But with Harriet I am still on the plane. I wanted to go to Italy this time. I don't want to go back to Holland. I don't want to get off the plane. There has been a mistake, surely? No-one goes to Holland twice, even if you have noticed it's not all bad. I am stamping my feet. And shaking my head. I want to go to Italy. Just once. Please. 

What not to say

I have written a post like this before, when Will was little and people used to drive me crazy with their well meaning advice or sympathy. I now have two deaf children and people aren't any less well meaning, or any less annoying. I know they are trying to help but please, please, don't say these things to me...

  • "I know if I had a choice between a child that was blind or a child that was deaf I would choose deaf". - People are STILL saying this!!! You see, the thing is, I didn't get a choice. If I had a freaking choice I would have chosen a kid with no disabilities at all. It's not the best of bad situation. It's just a bad situation. 
  • "At least she is a girl"
    - Really? You think that makes it better? You think that I am less upset about her hearing loss because I can put her in frilly dresses? In reality it makes it harder because I worry about completely different things for her than I do for Will. It's a difficult world for women and having big magnets stuck to the side of her head isn't going to make it any easier for her.
  • "Now you've got one of each at least you don't have to have any more"
    - I know I resigned a few weeks ago but I have since changed my mind. I want more. I don't know how many or if we will actually have more but I have definitely decided to stop not wanting more. Either way it really is none of anyone else's business whether we have more kids or not. And the only thing worse than feeling like I can't have more because they are deaf is knowing that you feel that way too. 
  • "Awwww, that's a shame"
    -
    It is a shame, in fact it is a freaking disaster. But please don't say it in that sympathetic tone with your head cocked to the side and that sadness in your eyes. My heart is broken so I need you to at least pretend everything is OK just to help me get through the day.

    To be honest there is probably very little you can say so perhaps just don't ask about their hearing. Ask how much they weigh, what they enjoy doing, what they think of one another. Ask me how I am. Ask me if I would like a cup of tea or a gin and tonic. Don't ask me about their hearing and, this is the key, do not try and make it better. You can't and it just pisses me off. 


Thursday, 7 June 2012

Genetics Part 3: A stranger

I can't see it.
You can't see it.

It's as if it isn't there.

For 26 years it wasn't there. For 30 years it wasn't there.

I am not deaf. I am not hard of hearing. Neither is Shaun. Neither are any of our parents or siblings.

But there it is. On paper. We made our kids deaf. We made deaf kids. With our deaf genes. Our stupid deaf genes.

That you can't see. That aren't there. That weren't there. That are there.

I don't know who I am.

This whole time, this whole life. I have been trying to figure out who I am. I thought I was getting there but I was wrong. I have no freaking idea who I am. Because this whole time I was deaf. Not actively but secretly. Silently.

I don't know who I am and I don't know who he is and I don't know how it came to this.

Where did they come from? These genes?

These genes that were always there?

Why did my stupid uterus pick those. There were other genes, other, non deaf genes it could have picked. It could have used those to build my babies. My precious babies. The freaking majority of my genes are not deaf. Why did it pick those ones? Twice?

My body could have picked different genes. The good ones. I could have had my planned four children and never known. Never really known myself.

Never known who I am.

Makes you wonder.

Do we ever really know who we are?

Sunday, 27 May 2012

Hearing aids take 2

My little H had her hearing aids fitted last week. It was the best moment of my life. Than it itself makes me want to vomit. Let me tell you what happened.

It was one of those events that I didn't know I was stressed about until the morning of it when I couldn't stop crying and still didn't quite know why. My Mum was here to look after Will while I took Harri on my own but due to the waterfall that was my face her and W ended up coming with me. The tube line we needed to get was down. The other one takes longer. Longer to get to the station, longer on the tube. Someone pulled the passenger alarm. We were late and sweaty and oh.so.stressed. But I had managed to stop crying.

We have recently changed hospitals and the new one is amazing. Rocking horses in the reception. A whole floor of toys and games for the kids while they wait. A-maz-ing. Will was happy, Harri was sleeping. Things were looking up.

We were called in for our appointment and they audiologist went about the usual tests. Checking her ears for wax, looking at her ear drum to check for holes, etc, etc. Poor Will was so baffled why it was all happening to Harriet and not him.

And then came the moment. My Mum was holding her as Will played in the corner and I had an eye on both of them. They attached her tiny perfect moulds to the hearing aids and put them in her ears. And then they turned them on. And she began to laugh. A laugh that came from deep in her tummy. One of those wonderful giggles that only children can do. The ones that make your heart swell. She had never laughed before. The audiologist was talking, my Mum was talking, she was listening and she was laughing.

I was sobbing.

It was the most heart breakingly beautiful moment.

Galt Playnest



I have been putting off writing this post. Not because I haven't used the Galt playnest. Or because I haven't loved the playnest. But because Harriet's hearing loss has hit us hard, as a family, as a couple and as parents. And it's hard for me to say anything at all that isn't 'Ahhhhhhhhhhhhheeeeeefuckityfuckityfuckityfuckitybluuuuuuuuuuuuurrrrrrrrrrrhhhhhhhhhhhuuuuuummmmpppppppph'. You know?

Regardless, the sun has been shining and we have been in the garden a lot. Morning, day and evening. I love hanging out in our garden. It is small but perfect. It is an easy 'room' to be in. Entertaining, safe, warm. And our little Harriet has loved being in our garden in her new playnest.


It's like a doughnut. It comes in two parts, the cover and the ring that needs blown up. The instuctions say for a youngy baby like Harri just to partially inflate so that her back remains flat. We tried this but she ended up just sinking into it and couldn't really see much or gain anything for it. When we inflated it more and she was more upright she seemed a lot happier in it. Around the edge there are flaps and squeakers and the like that obviously Harri cannot benefit from as yet. Will, on the other hand, had a great time finding the cat under the flap and squeaking the ducks beak.


I think it will really come into it's own in a few months time when Harri is starting to learn to sit. You know that age where they can sit unaided but only for a few minutes until the topple backwards hitting their head (a bigger deal for my kids than most) and you end up having to surround them with cushions? Tada! Stick them in a playnest and if they fall they are cushioned. And, if they manage to remain sitting there is plenty for them to look at and play with. I like it.


I am a member of the Mumsnet Blogging Network, a group of parent bloggers picked by Mumsnet to review products, services, events and brands. I have not paid for the product or to attend an event. I have editorial control and retain full editorial integrity.

Monday, 14 May 2012

Cochlear Implants

Will's hearing loss is moderate to severe. Moderate in his right ear and severe in his left. They take the best ear they say. So they say he has moderate loss.

Harriet's got nothing. She is profoundly deaf in her right ear and severe to profoundly deaf in her left. That means at best she has a severe hearing loss.

She is having hearing aids fitted next week but they aren't expected to make much of a difference. She has been referred to the cochlear implant team. I can't say that out loud. It's huge. And it makes this experience very, very different to the one we have so far been on with Will.

When she first failed all her tests I thought I would be OK because, despite it not hurting any less, I was more prepared. I had done it before with Will. But I haven't done this before.

She will have to have surgery. 3 hours if they do just the one side, more if they do both. General anaesthetic. An overnight stay. Scars. Pain. Risks.

The implant is made up of two parts - the one that is implanted in the cochlear, in her skull, and the one that attaches to the outside of her head with a magnet. The outside bit reacts to things. One of these things is static. This means that with it on she can't go down slides, can't play in a soft play area.

So if she can hear, she can't play. And to play, she can't hear.

Cochlear implants are a medical marvel. They can take my deaf daughter and let her hear. But she can't go down slides.

It's a cruel, cruel world sometimes. 

Wednesday, 2 May 2012

New Friends. Old Feelings.

I have a new group of Mum friends since having Harriet, They are lovely, really lovely.

Here comes the but...

But they are all into this 'baby signing'. "Teach your baby to communicate before they can talk", "reduce frustration and therefore tantrums" etc etc.

Now. I am all for signing. Obviously. I will vouch for it's benefits. I agree it reduces tantrums.

But my kids are deaf. They have to learn sign. I have to learn sign. We don't have any other way to communicate. And you know what? I am bitter about that. And I don't think I realised quite how bitter.

I have talked before about jealousy. It's back. Actually I don't think it ever went away. But it's just been given a new lease of life along with my daughters.

I sit around talking to all these new Mums about their beautiful, perfect babies and all I find myself thinking is 'but mine is deaf'.

I feel so much guilt.

I thought it would be different if it happened again, easier somehow. But it is exactly the same. I feel so responsible. So guilty. And so, so, so bitter.

So please excuse me if I don't want to sit around chatting about baby sign. Or how your baby has just started gurgling. Or how at 10 weeks you can already have a conversation with her.

Because I don't have any of those things.

I have a deaf baby.

And I will never, ever forgive myself.

Tuesday, 1 May 2012

Please.

Almost exactly 14 weeks ago I found out that my fiance had skin cancer.

Today I found out that the cancer is gone. He will have regular checks for the next 5 years but, for now at least, the C word is no more.

It has been a tough 14 weeks.

There were 2 operations, 1 big, 1 small.

There were tears. There was stress and drama and shouting and hugging and anger and guilt and love and hate. There was bitterness and resentment and hysteria and compassion and sympathy and pain.

It has been a tough 14 weeks.

But today we came out the end of it and he is cancer free. He is alive and he is healthy and he can continue to be the wonderful Father to our children that he always has been.

And so, I beg you, again. Check your moles. Go to the doctors. Get a referral. Waste peoples time. Because if you go through what we went through and come out where we came out today then it will all be worth it. But if you ignore the signs or choose not to look for them you might not be so lucky.

14 weeks ago I thought I was going to be raising our two children alone. Today I am drinking champagne and feeling lucky and in love.

So please. Check your skin, your breasts, your balls. Go to the doctors. Don't wait until it is too late.

I know I'd miss you.

Monday, 16 April 2012

Worry

I am so tired. So very, very tired.

Not tired that a good nights sleep will fix. Or a year of good nights sleep for that matter. Tired in my bones. Tired in my soul. Tired of coping. Tired of having to cope.

I don't have a choice, I don't want a choice. If there was a choice I would only choose to cope. But I am so so so tired.

Harriet has an MRI scan tomorrow. She has to be asleep for it. I am worried about getting to the hospital on my own. I am worried about Will going to his child minder on a day he usually spends with me. I am worried about getting Harriet to sleep. I am worried about her staying asleep. I am dreading seeing her tiny body in that huge, noisy machine. I am dreading the tantrum Will will inevitably throw when I pick him up as punishment for leaving him.

I am tired from having to pretend that all of these things will be OK.

Shaun has an operation to remove more skin from his calf on Thursday. I am worried about it. I am worried about the general anaesthetic. I am worried about not being able to be there with him. I am worried about him coming round on his own in hospital. My heart breaks when I think about how badly I wish I could be there holding his hand. I worry about how much pain he will be in, about how out of it the anaesthetic will make him, about how sick he will feel for days afterwards. I am worried about his two week recovery. I am worried about explaining to Will why Daddy can't walk, run, play football. I am worried about how upset Will is going to be about the whole situation. I am worried that I will be neglecting Harriet because I am spending so much time worrying about Shaun and Will.

Do you see?

I am so, so, so very, very tired.

Wednesday, 11 April 2012

Hope is a dangerous thing

There is a quote from one of my fiance's favourite movies, The Shawshank Redemption, which has been running through my head of late.

Let me tell you something my friend. Hope is a dangerous thing. Hope can drive a man insane

I hate hope. What I hate most about it is how it creeps up on me when I am not looking. Bastard hope sneaks in and settles itself down, getting all comfortable. Just to be swiftly replaced with utter devastation when it leaves, scarpering into the distance leaving not even a trace of it's existence.

When we fell pregnant with Harriet we knew there was a chance that Will's hearing was caused by genetics and that, therefore, she would have the same. But still I hoped. I let myself hope that she wouldn't be that unlucky, that we wouldn't be that unlucky.

When she was inside me, squirming around, I let myself believe that she squirmed in reaction to Shaun's voice, to my voice. I let hope in.

In the hospital, when she failed her newborn screening hearing test at just hours old, I heard myself say 'her brother is deaf' and I heard the audiologist say 'it could be just fluid, she had a very quick birth, it's common' and I chose to believe her over what I should have known to be true. Hope made me.

And so today, when we sat for hours as she was sedated and prodded and poked and tested, I hoped. I hoped that the doctors would turn around and say 'hurrah, she can hear!'. I know that she doesn't startle at all and I know that she already failed two hearing tests and I know that there is a chance she has a genetic condition that makes her deaf. But that bastard hope was there, the whole time, taunting me.

And then when they did turn around and say that she can't hear, that she will need hearing aids, hope was gone. When they said she has a severe loss in both ears and will struggle alongside her brother to talk and learn, hope was nowhere to be seen. It deserted me. It left me empty.

Let me tell you something my friend. Hope is a dangerous thing. Hope can drive a man insane.


Back to reality and back on the Yeah Write wagon. Come and have a read of the other awesome bloggers that are there with me. Oh and vote for your favourite if you like!

Tuesday, 10 April 2012

Genetics Part 2: a resignation

res·ig·na·tion

[rez-ig-ney-shuhn]
noun
1. the act of resigning.
2. a formal statement, document, etc., stating that one gives up an office, position, etc.
3.an accepting, unresisting attitude, state, etc.; submission; acquiescence: to meet one's fate with resignation.
 
It is with a heavy, heavy heart I resign. From having children. It is one of the hardest decisions I have ever made and I am still not certain about it. But I think it is the only real option. 
 
We, my baby daddy and I, carry duff genes. A tiny, tiny imperfection that doesn't affect either of us at all. But it affects our babies. 
 
 
 I have always, as long as I can remember, wanted 4 children. 

The diagram above makes it look like if I had my four children that just one of them would be unlucky enough to inherit our deaf genes. I wish that was true. What it really means is that every time we reproduce there is a 25% chance our child will be deaf. We have taken that chance twice so far and both of our children have been unlucky. That's 100%. 

Our children are fine, they will live normal lives and there really is very little that they won't be able to do. But the early years of their life are a lot of hard work for us as parents. Not to say all parents don't have their work cut out, but we are learning sign language, teaching sign language, conducting daily speech and language therapy. We are battling to get hearing aids kept in, replacing them when they fall out, watching constantly to see if they are being pulled out. We have 6 weekly hospital appointments for new moulds. We have 6 monthly hearing tests to attend. We have to catch our children from every fall that we can't prevent because if they hit their heads they could lose their hearing altogether. Not to mention all the energy we put into feeling guilty and into loving them so much to compensate that guilt.

It's exhausting. 

I can't do it another two times over. 

It wouldn't be fair on them and it wouldn't be fair on us as individuals or us as a couple.

And so, with bitterness, I resign.

Tuesday, 3 April 2012

Genetics part 1: a love affair

As you probably know, since we found out about Will's hearing deficit I have blamed myself. It's hard not to. The way I saw it, I built him in my body and therefore it was my body that had failed him by building that particular bit to a substandard level. I use the past tense in that there sentence because I no longer feel like that to that extent. It's taken a lot of time and blogging but I have, for the most part, accepted that we can't change it and blaming my self was helping no-one.

We recently learnt that Will definitely has Pendred's Syndrome; a genetic defect affecting his vestibular aqueduct and cochlea.

For this to happen, Shaun and I both have to carry a gene defect that when paired with the same, create the syndrome. It has to have been in both of our families for generations, hiding silently. Lurking.

I sometimes thought that if this turned out to be the case I would resent him. I thought I would resent the universe for bringing us together. I thought I would be angry. And I thought I would doubt our relationship and our future.

None of these things happened.

I felt guilt. Horrible, drowning, suffocating guilt. I felt sorry. So very, very sorry. Sorry for saying hello on the stairs. Sorry for sending flirtatious emails (we met at work). Sorry for letting him fall in love with me. Sorry for having the gene that, when it met him, meant he had disabled children. Sorry for not being one of the millions of other girls he could have met. Sorry for having the gene. Sorry for ruining his life, for making it that much harder, for causing him all this pain.

Guilt, a mother's ruin.

But not sorry I met him. Not angry I met him. Not sorry I fell in love with him. Not angry that he made my children disabled. I felt bad for him but not bad for myself.

It made me love him that much more. There is no-one I would rather travel this journey with.

Friday, 30 March 2012

Catching Up

I'm back! I haven't posted since Valentines day and a LOT has gone down since then friends. A lot. Good and bad but all pretty huge. I am not sure I am ready to go into depth about all of it but let me at least try and summarise so that when I do elaborate you know what I am on about.

Well the biggest thing, as I'm sure you know if you follow me on Twitter or FB or indeed in real life is that we had the baby! A girl! Harriet was born on March 7th at 23:23 and came out a whopping 10lbs! It's no wonder I could hardly walk by the end!

Here she is in all her pink glory.

Cute no? Well I think so!

The birth was amazing. I don't think I ever got round to telling you guys Will's birth story but it was a long, rough ride. This time, however, I was all kinds of in control and had my dream drug free natural birth. Not even gas and air. Can I get a whoooooooooooop whoooooooooop???!

So, as you can imagine, I was left on a pretty large high afterwards. I was (and still am) very, very proud of myself.

And then came the crash. Harriet has failed her newborn hearing screening. This doesn't necessarily mean that she is deaf, it could be fluid etc but I heard all those excuses with Will and believed them for months making the crushing truth even harder to hear. So this time I am trying to accept what looks like the inevitable from the start. To add to this we got some results of genetic testing confirming that Will's hearing loss is indeed a result of a genetic syndrome. Enter a whole HEAP of messed up emotions and guilt on top of my fluctuating i just gave birth hormones. Yeah, the crash was big, the birth long forgotten.

For now, things seem to have levelled out and I have stopped randomly bursting into tears (this is not true, but now the tears are about how unbelievable tired I am or knocking over a cup of tea, not about how I have ruined my children's lives). This week was the first week I looked after both kids on my own and truth be told it was much easier that when Daddy was at home or when my Mum was staying. I don't know why but it has been. Of course now Will has a bug and is poorly making it especially hard to divide my attention but why would our lives be simple or God forbid easy? It's just not so.

Thursday, 9 February 2012

Moley moley moley

Everyone remembers that scene from Austin Powers right? The one with the mole? Moley, moley, moley?! Too. Bloody. Funny.


Well, sometimes, it turns out, moles are not so funny. Sometimes they are cancerous and evil and scary.

So please, I beg you, get yours checked.

Cancer, even skin cancer is too big for me to talk to you about and even start to advise you on but I can tell you what happened to us.

S had a mole on his calf that ticked all of the A,B,C,D,E boxes (see below) and was sore to touch (one advantage of having an overly inquisitive toddler poking at you constantly, sometimes it hurts where it shouldn't). He went to the doctors and then the hospital and then into surgery all within about a fortnight. It was (can I get a whoop whoop for the past tense there, it's gone!) a melanoma. We are not out of the woods yet and there is another surgery ahead of us but, for now, the cancer is gone, because we found it early on in it's evil little life.

So have a look, a read and a wee inspection of your skin. Because you never know what you might find. It might just save your life, like our wee Will saved his Dads.

Things to look for...
  • Asymmetry – Melanomas are likely to be irregular or asymmetrical. Ordinary moles are usually symmetrical (both halves look the same).
  • Border – Melanomas are more likely to have an irregular border with jagged edges. Moles usually have a well-defined regular border.
  • Colour – Melanomas tend to have more than one colour. They may have different shades like brown mixed with black, red, pink, white or a bluish tint. Moles are usually just one shade of brown.
  • Diameter – Melanomas are usually more than 7mm across. Moles are normally no bigger than the blunt end of a pencil (about 6mm across).
  • Evolving (changing) – Look for changes in the size, shape or colour of a mole.
See your doctor straight away if you have:
  • any of the ABCDE signs
  • any unusual marks on the skin
  • a mole that is changing in size, shape or colour
  • tingling or itching in a mole
  • crusting or bleeding in a mole
  • something growing under a nail or a new pigmented line in a nail.
The earlier melanoma is diagnosed and treated the more likely it is to be cured.

I got all the above information from the Macmillan website which is a fantastic charity and a very easy to use website.

So Go. Get naked. Check yourself out. Please.

Tuesday, 7 February 2012

Tag!

Urgh. I bloody hated tag at school. Or any kind of sport like physical activity. I always thought that was because I wasn't competitive, had no desire to win. It took me until I was waaaay into my 20s to figure out it was actually because I am uber competitive and rubbish at sport. Not things that sit well together, turns out.

Anyway, this game of tag is different, mainly because I don't have to get up off my rapidly expanding pregnant ass and also because there isn't a loser in sight.

What has happened here is that Jamie from Chosen Chaos has tagged me in the 11 ques­tions game. The rules of which really are hidden in the name. She was tagged by another blogger (2 actually, that's popularity for you!), had to answer 11 (22) of their questions, pick her own 11 bloggers to 'tag' and write her own 11 questions for them to answer. Enter moi..


1. What’s the best con­cert you’ve seen?
Can I pick 2? The best concert for concert type reasons was most definitely the Take That a couple of years ago. The effects and drama were phenomenal and those boys, well, as men they brought out the teenager in me much more than they did 15 years prior!
The second one was a Pearl Jam concert I went to the day I found out I was pregnant with Will. We had done the test that morning and told no-one. Shaun LOVES Pearl Jam. I knew one song I think, maybe two but I didn't care. I spent the entire evening is a blissful daze of happiness at being with the most amazing man and starting the most amazing journey.

2. What are the must have pizza toppings?
I am not a lover of pizza as a rule but if I do eat it it must contain pepperoni. Pizza isn't pizza without pepperoni.

3. What’s your iden­ti­fy­ing mark… think Goldie Hawn in Overboard.
Ok, I'll admit it. I had to google Overboard. I have not seen many movies, in particular any that are deemed 'must see'. Pick a movie, any movie. I won't have seen it.
Anywyay google did not help me figure out what her identifying mark was but seen as the movie seemed to involve amnesia I am guessing it is a physical mark that she used? I have a very dark mole on my chin that people always tell me is pen. It's not pen. I have showered a fair few times over the past 20+ years and it has never come off. It's a mole friends, not pen.

4. When and what makes you feel pretty?
Shaun. When out of nowhere, often when I have made no effort whatsoever, just got out the shower or just getting into bed, he will say 'you look so pretty, can I take a picture?'

5. What’s your favorite meal of the day?
Breakfast. I always wake up hungry and I love breakfast. Toast, cereal, pancakes, eggs, bacon. Big or small I love it and it really is the best way to start the day - eating. Shaun's scrambled eggs and a coffee are the BEST.

6. Do you clean your house before your Mom comes to visit?  Why or why not?
Yes. Because she's my Mum. And because she says things like 'do you ever make your bed?' if it's not made ONE time. Or 'there is a lot of cat hair on your kitchen floor' if I haven't hoovered. Or, the worst, she goes around cleaning it for me.

7. What was your first car?
A Nissan Bluebird that had belonged to my Grandad. It was huge and I couldn't drive it for the life of me. My dad took me out in it one day and when we were pulling into our driveway after a less that successful 'lesson' I didn't stop and knocked down the wall between us and our neighbours. He says he has never been so angry and found something so funny at the same time. I still haven't learnt to drive.

8. When you finally grow up, what do you want to do?
I want to be that Mum with the house that all the kids want to come to. I want to make the best cakes, have the best activities, be the fun but fair one. I want my kids friends to feel comfortable here from age zero to adulthood. I want my kids to want to be here and to want to bring their friends here.

9. If you lived just by your­self, with no one else to care for what would you have for dinner?
Cereal or toast. My love of cooking is to bring happiness to other people, I have no interest in feeding myself other than for fuel.

10. You’ve just been offered an all expenses paid trip to any­where with any­one — where are you going and who are you taking?
I'm not going. I'd send my parents. I have been lucky and seen a lot of the world because of what they have done for me. It's time they got that chance so I'd get them a round the world trip that they could do as and when they wanted, in long bursts or short (as long as they were still around to babysit as when I need them).

11. What is your favorite quote?
Oh my. I LOVE quotes and have done since I was a teenager. It's almost too hard to pick just one but if I have to I think I will go with 'an eye for an eye and soon the world will be blind' - Mahatma Ghandi. I have a very good memory and a very (very) strong tendency to hold grudges so it is one I try and remind myself of. Be the bigger person and all that.


So here's the bit where I pass on the chain. Except I'm not. I wrote this post ages ago and it's been sitting here while I try and think of 11 questions worth of 11 fellow bloggers. I am giving up. I am going to step down from blogging for a while to concentrate on my (expanding any day now) family so I leave you with the above answers to Jamie's great questions. I really enjoyed answering them, writing about something fun and lighthearted. I hope you enjoy reading them too.

I'll see you when I see you.

XOXO.

Wednesday, 1 February 2012

Melodrama and Perspective

These are the two lessons I have learnt this week. Well, perspective is a lesson I have learnt, melodrama is just how I went about it.

I literally spent every day last week thinking I was going to be raising my very young children alone. I would frighten myself by realising I was daydreaming plans of how I would cope, where we would live, where I would work, who would watch the kids completely calmly. And it was this that would send me into fits of tears and panic. Not that I would have to do it, but that I was already planning it.

The surgery on Friday went well. The cancer was cut out and now we are awaiting further analysis to see how ferocious it is and if it is likely to have spread. The surgeon was fantastic and refused to tell us either way what he thought the prognosis without the evidence of the results was which was strangely reassuring.

And so since then there has been less melodrama and more perspective. We have talked a lot about what will happen on results day. About what is good news and what is bad news and what is somewhere in between. There have been less tears and more laughter. Less tension and more love.

Because you see, no matter what the news is next week, we now know what it feels like to think you are going to lose one another. To think you are going to miss out on the big things and the small things. To feel like you are going to raise children alone, or not see your children grow up.

And whilst I am not grateful or thankful for this experience and we quite frankly could have done without it, I am grateful for the perspective it has offered me. Us. I am so very appreciative of what I have today, of how loved I am and how much I love. And I really do value every minute we have together as a couple and as a family.

Thursday, 26 January 2012

This blog is my therapy

My Mum said to me this week "Don't be slow on asking for counselling if you feel you need it".

I have had counselling twice in my life before. Once in my early twenties for an eating disorder and associated depression and then again when I was pregnant with Will for antenatal depression. I am not sure that either time it made a notable difference to me but it was good to talk. I think, it is always good to talk.

My fiance has cancer. Our second baby is due in just over 5 weeks time. Our son is only 20 months old.

This has undoubtedly been the hardest week of my life so far.

Over the past few years, as you will probably know from my blogging topics so far we have been through a lot. There has been burglary (Jan 2010), miscarriage (Jan 2011) and now cancer (Jan 2012). The pattern is not lost on me. I am giving up Januaries. In between there have been traumatic births, post traumatic stress, hearing deficiency diagnosis', MRI scans, ECGs, dead grandparents, broken bones, ceilings collapsing.

Anyway, my point is that despite all of this, I do not feel like I need counselling. I don't think that talking to a stranger is going to help any of these things. It certainly will not make them go away.

And yet that is exactly what I am doing. I am talking to you, perhaps you are a friend but there is a chance you are a stranger. And it does help. It doesn't make anything go away but it makes me feel so much better just to put out there what I am thinking and feeling.

Since the diagnosis on Monday all of our friends and family that we have chosen to share the news with have been fantastically and unwaveringly supportive. But so have so many strangers. For Yeah Write #41 I wrote this post and the comments have brought me to tears on more than once occasion. I feel so lucky to have people that listen and empathise, both close to me and far away.

So thanks. Thanks for being my counsellors, my therapists and for not charging me a penny for the privilege. You honestly do make the dark days lighter.

Tuesday, 24 January 2012

The C word

The thing about the C word, is when you hear it, you only think of one thing. I only think of one thing. I cannot even bring myself to write the word, the one thing down. I did it but had to delete it, it was too much.

When you are told that someone you love, someone who means the absolute world to you, someone you cannot, should not, will not live without, has the C word, the world stops. Then it speeds up, you fast forward, make plans, prepare for the worst, figure out how you will cope. Then it goes backwards, tries to find answers, blame, guilt. How did this happen? What did I do wrong? What should I have done differently?

Then there you are, back in the present. With the information you have been given. Not enough but too much, all at the same time.

And you realise, that all that matters is today. Getting through today, having today, appreciating today. Doing the best you can do with today. Because you don't know what tomorrow will bring other than another today.


I have been skulking in the background of lovelinks for a few weeks now, reading and commenting rather than writing and while I have been away it's changed! It's now called Yeah Write and has a shiny new badge to prove it. Click on it and spread the love.

Saturday, 14 January 2012

A conversation

Last night, on the way home from his child minders, Will and I had a conversation. An actual, two way, conversation.

It went like this...

Me: (talking because I was carrying him and couldn't sign) Did you have a good day?
Will: Nodding, yes
Me: Did you go to the park, see the ducks?
Will: Nodding, yes
Me: What shall we do when we get home? Shall we have kisses and cuddles?
Will: Shakes his head, no
Me: Well what shall we do then?
Will: Signs 'TV'
Me: You want to watch TV?
Will: Nodding, yes, signs again TV. Then signs Daddy with a quizical look on his face
Me: Daddy?
Will: Nodding, yes
Me: No, Daddy is still at work, but Mummy will watch TV with you
Will: Nodding, yes, OK.

Freaking AWESOME. Our first ever conversation.

Friday, 13 January 2012

If I could turn back time...

Today I am over at Chosen Chaos talking to my 18 year old self about what life in the next 10 years will hold.

Come over and take a look...here

And while you are there read the rest of Jamie's stuff - it's awesome! Apart from the Dorito Chicken, that's just weird.

Xx

Wednesday, 11 January 2012

Am I the only person to have a second child?

Okay, rant time.

Am I the only mother to ever have had a second child? I am honestly starting to feel that way!

It is a little over 7 weeks until baby 2 is due to make an arrival and we are starting to panic. We don't have cot, a double buggy, enough storage for clothes, a change bag...essentially nothing that really matters and we wouldn't be able to cope without. But none the less it feels like it's coming round a little bit too quick.
But we are excited. Really, really excited.

Other people, it seems, are less excited and also starting to panic. Or perhaps scaremonger is a better word for it.

I am SO fed up of people telling me how badly behaved William is going to be once the baby arrives. He has just reached that age where he is, more and more often, testing his boundaries. And so I am spending more and more time having to reinforce those boundaries and at times if I'm honest, I am finding it hard. But do you know what is not helpful? What is not helpful is if I am telling you that I am finding it hard if you say things like 'It's just going to get harder when the baby comes' or 'He will only get worse when the baby comes', especially if you laugh while you are saying it. Not. Helpful.

Another thing that is not helpful is if you tell me why you are going to buy Will a million gifts when the baby comes to help him cope with the emotional trauma that is a younger sibling. I am certain that material gifts are not going to go far to repairing any emotional uncertainty he may feel and would even go so far as to say that they may even make the situation worse. Guilt gifting anyone? No?

So please stop it. Stop telling me how awful it is going to be. Stop going on about how tired I am going to be. Stop telling me how bad William's behaviour is going to get. Stop telling me about your friends son who turned into the devil as soon as his younger sibling arrived and has never gone back to the angel he once was. Stop making me feel guilty for giving William the GIFT that is a younger sibling.

Because I have a sister and I know my life is better for her. And Shaun has a sister and I know his life is better for her. And I know plenty of people that have had plenty of children and none of their eldest seem to have any long lasting damage. And I KNOW that William is going to make the best big brother ever because he already dresses, feeds and reads books to his teddy bears.

OK, I'm done.

Wednesday, 4 January 2012

It's the small things

We are going away this weekend. To Scotland. To look at wedding venues. Without Will.

I am VERY excited. But not about the couple time, or the wedding planning, or the sleep ins. Although those are, of course, all exciting.

I am excited about not having to share my breakfast

I am excited about peeing being the first thing I do when I awake (naturally) in the morning, rather than change someone else's pee filled nappy, fix his milk, get him settled and then remember at some point that I need the toilet.

I am excited about having a shower, getting dressed, putting make up on, drying my hair...all without 'help'.

I am excited about going to the bathroom alone and taking as long as I like to do whatever I like.

I am excited about napping when I like and for as long as I like.

I am excited about being able to eat chocolate and sweets and other hypocritical parent favourites in the car and on the train and randomly throughout the day - not in secret.

I am excited about falling asleep without that 'how many hours do we have until he is awake' feeling.

I am excited about all of these things but mostly I am excited about missing the small person that means I cannot do all of these things and about coming home to his cute smiles and welcoming arms and appreciating them for how lovely they are.

It's a much needed break and I cannot wait.

A bumpalicious New Years Eve

As you may have noticed I have been in a bit of a grump over the festive season. Some reasons are unknown even to me but one of them has definitely been trying to find something, anything to wear to all the events that have taken place in my current state of 'round'.

So, when I got the offer to review a dress for a company called Bumpalicious Maternity I jumped at the chance!

Outside of pregnancy I am a size 10 with very little shape and no bust. It's taken me a lifetime to come to terms with this but I at least know how to dress for it. In pregnancy I have these boobs I have never seen anything like before, a giant ass, some seriously chunky thighs and not to mention the big old bump sticking out the front of me. So I need all the help I can get!

Amanda at Bumpalicious Maternity was amazing. On their website they have what they call a Personal Profile Form which made a massive difference. It asks for a lot of information and I have to admit I was reluctant to a) get off the sofa to actually take my measurements and b) acknowledge the higher than I would like numbers that were reported. But, it does mean that they can recommend a dress that will actually fit and look nice. They also ask about fashion preferences which is good because I can be quite fussy about what I like.

Anyway, all the form filling in ended in this...


It is a simple black dress, about knee length. It is a lovely soft material with a satin ribbon helping to cinch it in below the bust. The top was really pretty lace and has a built in bra which I love and meant the back, which was sheer lace, wasn't spoiled by bra straps showing through. 

My only negative is that the bust bit was a little too large for me and so the dress would have looked better if I had time to pin it at the sides to bring it in. Turns out that even my new giant boobs aren't big enough!

I would definitely recommend them based on the service alone. The dresses, I thought, were quite pricey but lovely for special occasions. And they also claim that the dresses can be worn after pregnancy as well, giving them a longer life span and therefore more value. For me though, even if it did continue to look nice, I am not sure I would necessarily want to wear a pregnancy dress post pregnancy. But that doesn't mean that you won't!

I am a member of the Mumsnet Blogging Network, a group of parent bloggers picked by Mumsnet to review
products, services, events and brands. I have not paid for the product or to attend an event. I
have editorial control and retain full editorial integrity.