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.

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.

Get on your dancing shoes...or socks at least

So, as I'm sure you'll already know from my previous two posts about the doctors and his blood tests, my son is pretty freaking awesome.

What you won't already know is that he got his Mummy's moves. And for a deaf kid, it's quite an achievement to appreciate music at all, let alone with grooves like this.

And if you are wondering, yes I do dance and clean at the same time. And yes, I do it in my undies.

There are some things only a mother can teach you.

Blood tests and a super hero

Did you read my recent post about going to the doctors?

Well today surpassed all of that pride I have felt over recent trips. Today Will had a blood test as part of his genetic testing to try and find out what it is (if anything) that has caused his hearing loss and if it will affect future children of ours.

This is his shirt, and I can tell you that the badge does not do my wee boy justice.

We went in and Will was placed on my lap with a cushion on his. The nurses rolled up both his sleeves and chose his left inner elbow to take the blood from. We discussed anaesthetic but because of his eczema the cream would have taken an hour to take effect and I didn't want to hang around that long, so we went without. Eeeeeeeeeeeeekkkk.

There was a 'play expert' with bubbles and a finger puppet kitten to distract him - he was having none of it.

Will watched the needle go in to his little arm, watched the skin around it turn red and fiery and watched the vial fill up with his own blood.

He made not a peep. He had no dummy, no snacks, no distraction, and there wasn't a tear in sight.

The staff were astounded.

And then, AND THEN, when they had removed the needle and put the plaster over the hole, he offered them his other arm to do the same to that.

I am pretty sure that gives him super hero status, in his Mummy's eyes at least.

The greenest of monsters

Jealousy.

Once upon a time a good friend of mine (she doesn't look like that) said to me 'Envy is wanting what someone else has, jealousy is not wanting them to have it'

I have been thinking a lot about both recently, fueled by this post here, which I feel has blurred the line between the two. But it's about something I know nothing about. Here's what I do know about.

I suffer from what is, based on the above, a big old case of envy. Ever since I found out that William was deaf I have looked at all the people around me having children and wondered why they 'got off'. Why it had to be my baby that got the duff gene out of nowhere. Why my baby has a harder life than theirs. Why they get to moan about sleepless nights and weaning and laundry while I sit on the floor rocking, wishing that these were the only things I had to worry about. Why do my friends get to fret about their perfectly normal children going to school, making friends and coping with the change when I, already, worry about my child going to school and being able to talk.  

But not once, not ever, not for one portion of a second, have I ever, ever wished that these people had deaf children. Or that their children had any kind of disability at all. Or that they didn't have their wonderful, non disabled children.

I am envious that they don't have to deal with what I have to deal with. But I am not jealous of their 'normality'. I would not for one second wish this heartache on anyone.

But that doesn't stop me from wishing it was different sometimes. For me. Not for anyone else.

I'm linking up with lovelinks for the first time...come join me!

Diagnosis Day

It was over a year ago now and I have not talked about the day William was diagnosed as deaf since the day itself. To anyone. It was, easily, the worst day of my life. And, as you may have read here, I have had some pretty tough days.

It was his fifth hearing test. We had had four inconclusive tests because the baby has to be asleep for the entirety of the testing which can take up to an hour. If you have had children you probably know that young babies do not sleep on demand and are easily woken, especially if you put 5 of these around their skull when they are already asleep.

And, despite people around us having their babies pass their hearing tests whilst awake but breastfeeding or being cradled into stillness, we were constantly reassured by the health professionals that our baby probably wasn't deaf, he just needed to be asleep for the testing to work.

So, on test 5, he managed to stay asleep. When he awoke, the audiologist was very quiet.
Shaun said to him "Did you get it?"
He said "It doesn't look good".
I said nothing
My head said "What the FUCK does that even mean????? Is he deaf or not deaf???? I don't want to know how it LOOKS, I want to know how it IS"

In time the audiologist told us that William had moderate hearing loss in his right ear and severe to profound hearing loss in his left. They are not able to test to the highest level of sounds in babies, lest they damage the hearing (the irony is not lost on me) so we won't really know about his left ear until he is older. For now he will wear hearing aids on both ears. If he turns out to be profoundly deaf in his left there will be no point in a hearing aid on that ear.

My world had literally stopped turning. My heart had broken into more than a million pieces. I have never felt grief or sorrow or pain or guilt like it. I kept him close to me and sobbed 'I'm sorry, I'm sorry' over and over again. My poor baby.

I was told I needed to take him to hospital to have blood tests taken. I did not need an appointment, I just had to rock up and they would do it. No time to waste, I thought, I'll go now. This was one of my poorer life decisions.

It took me an hour to get to the hospital.

Blood tests at the hospital are on a ticket system. You take a ticket, you wait, they call your number off you go. I waited for an hour and a half. William did a poo. A poo that went all the way up his back, requiring a change of clothes. I couldn't fit my buggy in the toilet to get to the change table. By the time I had got in and changed him completely, we had missed our turn.

I went up to the curtains and pleaded, begged, that I didn't have to take a new ticket, that they would fit me in. The looked at me and said 'you or the baby?' I nodded 'the baby', the response 'we don't take blood from babies'.

I sobbed. Standing in the middle of a crowded hospital I sobbed and sobbed until I couldn't breathe. My baby was deaf and I didn't know why. All I knew was that it was my fault and that by not getting these blood tests I was failing him, again.

I found a reception desk and begged them to help me, to tell me where to go, to give me an appointment, to make the day easier. They sent me to paediatrics.

Paediatrics are obviously used to hysterical mothers because they knew how to look after me, to calm me down, to make it better. There was another long wait and eventually they took blood samples from the back of Wills hand and we left, still crying.

I got home at 5.30 that evening. Our hearing test appointment had been at 9am.

That was the longest day of my life.

The next few days, weeks maybe months even, I remember crying a lot. Sitting on the floor and crying. I remember thinking I would never get up.

It breaks my heart to think of how impossible that day was but it mends it to think of how far we've come. It's been a battle of course but we have a beautiful, smart, engaging little boy who runs and signs and talks and communicates and laughs and who loves life and who makes me so glad I did get off that floor and carry on because he is so very, very worth it.

Big steps for a little boy

A while ago I told you a story that, I think, displayed the first signs of Will not only hearing and listening but understanding. Well, that turned out to be just one of a few that have occurred over the past few weeks. Hurrah!

The first is a similar story to the last, one of listening and understanding. Will is really into pretending to cook, both me and his Dad love to cook and do cook a lot so it's no surprise he thinks of it as a fun thing to do. So rather than any of his toys, his present favourite thing to play with is anything out of the kitchen. Pots, pans, utensils, cake tins, tupperware.

Our coffee tables look like this...

Because of our delightful, inquisitive son, we do not keep anything in them and recently Will has taken to pretending they are his very own little oven. So unbelievably cute. I love watching him taking things in and out of it and watching his mind working overtime.

The other day he was carrying a two handled pan with just one hand and because of the angle he was holding it at, it wouldn't fit into the gap. From a distance away, I called his name and said to him 'use two hands, hold it with two hands'. We try and sign alongside speech at all times but I couldn't think of a gesture to accompany this so I just continued to repeat the words. It only took about three times before he did it. He looked at me, looked back, used two hands and sure enough got the pan in the 'oven'. So. Very. Proud. 

The other steps forward are wanted to share with you are particularly exciting - SPEECH!!!

Over the past couple of weeks Will has begun to mimic sounds. When he waves bye bye it is now accompanied by a heartwarming 'buh buh'. When playing on the train in the playground and a friend of ours said 'choo choo', William repeated 'wooo wooo'. And then this week when we were playing with rubber ducks and making them quack he said 'ack ack'.

I cannot tell you how excited and proud all of this makes me. Wearing the hearing aids is making such a difference at such a fast rate. I am so very pleased with him and his progress and I have even turned my own little corner. I am, for the first time, much happier when Will has his hearing aids in and want him to wear them. There is such a distinct difference in his behaviour and mood, making it obvious that they are quite blatantly the best thing for him. And what's best for him is best for me and best for us.

The television. And other hypocrisies.

Before becoming a Mum, I had a lot of experience with children and babies. I have seven cousins much younger than me, have worked in schools, volunteered in orphanages. Alongside this experience I also had a lot of opinions. I could see what parents, carers and teachers were doing right and what they were doing wrong. I pretty much had parenting sorted.

And then I had a baby. HO-LY SHIZZLE.

People say that you don't know what it is like to have a child until you actually have one. And it's true. And it's true that you will never appreciate how true that sentence is until you have actually had one. No matter how many times I say it to you. No matter how many times it was said to me. Since having my own baby I have learnt a whole heap of lessons and consequently have a whole heap more understanding and a whole heap less opinions!

Since William has started wearing his hearing aids regularly, we have been watching a lot more TV. It is amazing to see how much more he gets out of it now he can hear it. It may sound obvious but when he was younger it was hard to tell what, if any, difference the aids actually made. But here I have clear cut scientific evidence. Without the aids he would have watched for 10 minutes before getting bored and wandering off to amuse himself. Now he will sit for an hour, probably more if I let him.

Watching TV is just one of the many things I had certainty about when it comes to parenting...so here's what changed...

• My child was NEVER going to watch TV.
• It's not like he watches it all day every day but we do enjoy an hour or so of CBeebies and since he has started dancing to the music, laughing at the laughter, hearing the shows it's harder to turn it off
• My child will NEVER sleep in our bed.
• I can blame it on the tongue tie but despite feeding all day he actually slept alright at night and he was still in our bed for the first 4 months of his life.
• My child will NEVER eat crisps or cake or biscuits of chocolate.
• Come on, if you're eating it, they're eating it. It's moderated but still, he gets his fair share of sugar.
• My child will NEVER have a dummy.
• Again I can make excuses about his tongue tie but at the end of the day it was my decision to give it to him because it makes MY life easier. Sometimes that's key.

There are still some things that I am trying to hold on to like

• My child will not have any advanced technology like a mobile phone, iPod, iPad, laptop of his OWN until he is at least 10 (he can play on ours if the time is right).
• My child will never have a TV in his room
• My child will go to school every day, come rain or shine or cough or cold

But I have come to realise that you never know what parenting will throw at you and sometimes you do what you can just to get through another day. Or you compromise your principles because there are larger ones at stake. And, most importantly, that you never know what is 'right' until you are there, in that situation with your children and your partner and your level of exhaustion.

What, if any, of your principles have you compromised?

He understands!

Communication with children is tricky. You can never be sure if they can hear you or if they are ignoring you or if they just don't understand you. Communication with William is trickier. More often than not he cannot hear you and so is always 'ignoring' you and is a long way from understanding you, words at least (his communication through Sign Language is coming on wonderfully).

So this week we had a breakthrough. I had a friend visit with her 6 month old son. We had been home all day, Will was bored which turned into manic as soon as they arrived. He ran around, showing off, being loud and aggressive (you know the usual cabin fever score). Anyway, this culminated in him hitting the baby hard on the head with a toy. The poor baby cried very loudly and his Mummy picked him up and gave him a cuddle and he soon settled but William was obviously disturbed by the consequences of his actions. He looked over in mortification and I said to him 'go and give him a cuddle and say sorry'. And that's just what he did. He got up off of my lap, walked over to the baby and put his arms around him. Broke. My. Heart.

Now I'm not sure if he heard me - he has been wearing his hearing aids pretty much all day since we turned that corner recently - and understood my words.
Or if he understood the situation and transferred his knowledge that Mummy and Daddy cuddle him when he cries so that's what he had to do here.

Either way it shows that he is growing up, and he understood something and acted on it and that is a big step for us. Exciting!