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.

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!

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.

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.

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.

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.

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.