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.

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.

Top ten of 2011

As the year grows to a close and everyone seems to be making lists of their highlights, lowlights or favourite kebabs (no, really) of 2011 I thought I might as well join in.

2011 did not start well for us, as you may well have read about here or here. But, it has got a lot better since and so I thought I would tell you all about that.

So here goes...my positives from 2011. And you know what, it's been a good one!

1. Getting pregnant and getting past the 12 week mark. We lost our second pregnancy at 10 weeks so the happiness and excitement of this one was tempered until we made it safely past the first trimester. With just 2 months to go, the realisation of our family expanding by one more little person is setting in and we are all so very excited and happy!

2. We got engaged. We had always talked about marriage and kids and felt under no pressure to do the former before the latter. However, after getting through all of this and becoming a much, much stronger couple and team for it, it became really important to us to make it official. The wedding is not until December 2013 because we want the kids to be old enough to be part of it but planning is well under way and we are very excited!

3. Our wonderful William, against all odds, started to talk. His first proper, identifiable word was duck. It changed our worlds more than you know. He seems to have given up on saying duck now but clearly says 'car', 'gone', 'cat', 'Parker' (our cat's name) and 'cook' and has a whole heap of other sounds that are just waiting to be turned into proper words when his wee head is ready. Yay for him!

4. We bought a house. A proper grown up, expensive, let's stay here for a long time, house. I love it. It is just the perfect size and shape for our family with heaps of parks nearby to help with that never ending wee boy energy.

5. We had our first proper family holiday. We have been away for weekends since Will was born, and for long haul holidays to see family but they never felt like holidays should feel. They were full of obligation and tension and often, tragedy, and family time was rare. But last summer we went here to stay on a farm and it was wonderful. It was easy, enjoyable, relaxing, stimulating and perfect family QT. And that was with morning sickness and torrential rain all week!

6. Will stopped pulling out his hearing aids or refusing to wear them at all and started keeping them in ALL DAY long other than nap time and bath time. The difference they have made to both his and our lives is immeasurable. Such a huge milestone for us. 

7. Will started to sign; to properly use signing as a language and communication tool. I wrote this list when he had almost 40 signs, it badly needs updated as he already has closer to 60. It has made life much easier and more fun and is hopefully keeping Will from feeling too frustrated at not yet mastering much speech.

8. We got a cat. Well, technically, he is just on loan while some friends of ours are away experiencing life on the other side of the world. I have never been so much of an animal person but the difference he has made to our life as a family is wonderful. Will adores him as you can clearly see from the fact that 2 out of the 5 words he can say are 'cat' and 'Parker'. They are still learning each others limits but I can tell that there is a mutual admiration / fascination there and a whole lot of love.

9. Shaun got a new job. I knew that his old job was hard, that the people were annoying and that he felt, and was, undervalued and taken advantage of. I thought that was just how working was but turns out it doesn't have to be! His new job is just the right amount of hard to be stimulating without losing sleep over it, the people are wonderfully crazy so far and he feels valued and in control. He keeps saying 'I am so much happier' which makes me feel a) awful for not realising how unhappy he actually was and b) so very grateful that he had the gumption to get up and move on. We are all happier for it!

10. This last one is not so much of a point as just the whole year of 2011. At the beginning of the year it felt like we could, very easily, fall apart as a couple, a family and individuals. And what happened was that not only did we not fall apart, we got stronger as a couple, a family and as individuals. We didn't just get through it, we got over it and we are happy, happier than we have been probably. And going into 2012 I feel so lucky to have everything that I have and so excited about everything that is coming.

But enough of this sappy nonsense, someone pass the champagne and let's toast the new year!! xx

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!

Signs

I have decided, partly to make myself feel better and partly from a purely administrative point of view, to keep a list of William's signs. I also want to publish them with photographic evidence but, as I'm sure you know, toddlers are not always camera compliant, so we will see how that works out.

Ok, so for now, at 04/11/2011 (at almost exactly 18 months) we have...

1. bye bye (waving)
2. dummy (pointing at mouth with one finger)
3. food (pointing at mouth with all fingers)
4. bottle (fist with thumb and little finger out, drinking from thumb)
5. please (tapping mouth with open hand)
6. thank you (tapping mouth with open hand)
7. yes (nodding)
8. no (shaking head)
9. dog (hands bent forward like paws in front of chest)
10. cow (fist with thumb and finger out, thumbs into side of head)
11. sheep (fists with just little fingers out, little fingers spiralling from sides of head)
12. pig (fist twisting nose)
13. horse (fists on top of one another, in front of body, up and down)
14. bird (thumb and index finger tapping together)
15. duck (thumb and rest of fingers tapping together)
16. fish (moving flat hand infront of body like fish)
17. cake (tapping clawed hand onto flat hand)
18. ball (making ball shape with both hands)
19. up (pointing up)
20. come (beconing to come with his hand)
21. lion (making a claw coming toward you)
22. giraffe (hand coming out of neck and moving upward)
23. elephant (fist coming down from nose, mimicing a trunk)
24. train (flat hands either side of body moving circularly)
25. car (mimic turning a steering wheel)
26. bus (mimic turning a larger steering wheel)
27. digger (pretend to dig with one hand)
28. banana (pretend to peel an imaginary banana)
29. orange (pretend to squeeze something round, next to your mouth)
30. grape (hold one hand as if dangling a bunch of grapes, use the other to twist from it bigger and down)
31. hot (go to touch something and pull hand away sharply, as if it is hot)
32. cook (pretend to hold a frying pan and shake back and forth)
33. gone (have claw hands open and together and then pull away to clasped hands, repeatedly)
34. ready (with two open hands, push your thumbs into your chest)
35. again (flick the index and middle fingers of one hand down with the rest curled into a fist)
36. plane (make a fist with your thumb and little finger protruding and move it around up high, like a plane)
37. balloon (make a ball shape with your hands as if coming from your mouth while blowing)
38. drink (make a cup with your hand and pretend to drink from it

I feel better already, my kid is smart! Time to get some snaps!

Mmmmmm

I have been trying to write a post for a while now about Will's speech. Or lack of, rather. He still doesn't have any words and it's taking it's toll on me. Since he started wearing his hearing aids consistently he has come so far and the difference when he has them in is breathtaking.

But we have stalled. Predictably, I guess. Nothing can continue along that steep trajectory of progress. He has more sounds than before. And more listening skills. More understanding. More signing. All so very positive but my heart longs for a word. Just one word.

We work so hard, every day. Repeating, playing, reading. Nothing.

Today we went to deaf playgroup. It was much better than the previous time. There was a new boy there that William took quite a shine to. They played beautifully together around the toy kitchen and then with some jigsaws. One of the jigsaws was animals, an area where Will's signing excels. He was showing each animal to the other boy and telling him what it was, through sign. Horse, giraffe, elephant. Monkey, dog, alligator.

The professionals that run the group were so excited that of course my heart swelled with joy and with pride. My baby, not only communicating but teaching.

We decided from the beginning to sign with Will and always knew he would sign before he spoke. In sign he has as many, if not more, words as the children we know with normal hearing.

And whenever he signs a new word, I get excited, I praise him, I hug him and I am genuinely happy for him and for us for making such a smart kid. Because he is super smart.

But I still long for speech. Just for one word so that I can be reassured that one day there will be more. Because as much as I boldly say 'Will may never talk' and 'we are learning and teaching sign because he is deaf, it's part of who he is', there is still a part of me that is desperate for him to be normal. The part of me that is worrying about nursery, school, friends, bullies, exams, careers, relationships, grandchildren. That part of me was given hope when he started wearing his aids. Hope when he started to make sounds that I thought would become words. Hope that he would grow up to be just like everyone else but with hearing aids in his ears.

But the truth is he won't ever be like everyone else. Because he is different. Because he is disabled. And as much as I know I need to embrace this fact. Some days, most days of late, I just want to embrace him and cry about it.

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.

Comfort

Last night was one of those really tough nights of parenting. One of the ones that makes you wonder how you are going to cope with two. Why you ever thought you could cope with one. One of the ones that feels like it will never end but will be forgotten in an instant when something wonderful happens that we will remember forever like a milestone or a kiss.

There was vomit, lots of vomit. And tears, lots and lots of tears. And no sleep.

As I was lying in bed, listening to Shaun comfort our son through his 4th bout of vomiting, I thought how tender he is. How tender their relationship is. How lucky I am that I can stay in bed and listen to them rather than having to be the one up and doing it all alone. But as he whispered to him 'it's ok Puffin, it's ok, just get it all out, you'll be ok, Daddy's here, it's going to be ok, you are going to be ok, I love you, just get it out and you will feel better, I love you' I found myself thinking 'he can't hear you'.

And I think that this the is part of Will's hearing impairment that hurts the most. That in the depths of illness, as infrequent as they are, we don't put his hearing aids in. But we still talk to him, whisper to him. We use words that have been used to comfort us through pain by our own parents, by each other. And he misses all of it.

I take some comfort of my own in that I am a great believer in the power of touch. I am a tactile person and Shaun and I are a very tactile couple. William is cuddled and kissed and held and rocked and nurtured whether or not he is ill. And last night, when Shaun was whispering to him that it was all going to be ok, I hope that even though he couldn't hear him, he could understand that Daddy was there because Daddy was just that, there. Holding him, stroking his brow, mopping the sick from his mouth, kissing his head.

And I hope that every evening before I go to bed when I look in on my sleeping baby and tell him I love him, what he doesn't hear in my words he understands the next morning when we start our day with a long, perfect hug.

Because actions, as they say, speak louder than words.

A disappointment

When William was 6 months old we went for the first time to what is officially called 'Toddler Group'. In our house it is called 'Deaf playgroup'. Because that's what it is. Playgroup for deaf kids, kids with hearing aids, and cochlear implants. Kids who communicate through sign language.

It was hard. I didn't want to be there, I didn't want a deaf kid. I didn't want to learn sign language, I didn't want my kid to have to. I didn't want to hear what the other Mums had to say. I wasn't interested in how it was going to get better, how successful their kids were, how 'normal' life could, in fact, be.

But we persevered. And it did get better. And William did achieve and develop. And life does, more often than not, have a semblance of normality about it. There was one Mum in particular that helped me a lot. That very first day, she was the only one who talked to me. She asked how I felt, how my partner felt, my parents, his parents. She discussed tests with me, told me her story. She made me feel welcome and comfortable and most importantly, she made me realise that life goes on. That this wasn't the end.

And deaf playgroup became a wonderful thing. It was first thing on a Monday morning, it got us up and out the house. It was a 30 minute walk so it got me exercising and in the fresh air. William adored being there and socialising with the other children. For a long time Monday afternoons were the only day he would nap for 2 hours. It was part of our routine and we loved it.

And then the Government had to make cuts. The NHS had to make cuts. Playgroup is every other week now, somewhere new. On paper it's just a different children's centre in a different area, fortnightly instead of weekly.

To us, it is now two buses or a 20 minute walk and then a bus to get there. It takes 50 minutes.
The room it is in is upstairs. I have to leave my pushchair outside, even in the rain. I have to carry our bags and William up 2 flights of stairs.
The room is much smaller. Today there were 6 children, all William's age and it was crowded.
There are leaflets at a reachable level so the kids can pull them off and get in trouble for it.
There is no kitchen to make a cup of tea, just a shelf for the juice that again the kids can reach and again get in trouble for spilling.
It's on every other Tuesday, so if you miss one week, it's a whole month between playgroups.

These all might sounds silly or small. But they make it harder. And combined they make it hardly worth my while. I am pregnant and tired, if I am going to travel 50 minutes somewhere and the same home, it has to be worth it. And today just made me feel like it no longer is. Which is a real shame because it used to be the highlight of our week. And I really would have liked to have given the support that Mum gave me to another Mum with a newly diagnosed deaf baby.

Have budget cuts affected you and your family? How does it make you feel?

I have to tell you this story

This is my favourite piece of perfect communication William has carried out yet.

My parents were here this weekend and when Will woke up I took him into their bedroom to see them. After a bit of pottering he found my Dad's car keys on the side. He showed them to my Dad and my Dad signed 'car' to him (pretended to turn a steering wheel). William did it back and my Dad nodded. "Yes, car".

Then it got really cute. William pulled at my Dad until he was out of bed and sitting up. Then he went and got my Dad's shoes for him and gestured that he had to put them on. OMG just the cutest thing. Then he pulled at my Dad's hand again, to the stairs, down the stairs, to the front door, out into the street and into the car.

Last time my Dad was here he had let William sit in the front seat of his car and pretend to drive. I just find it the most beautiful thing that not only did he remember (it was 3 weeks ago), but he managed to get him to do it again just from finding a set of keys.

Alas I didn't get a picture because it was 7am and as happy as my Dad and Will are to walk the streets in their PJs at that time, me not so much. But I will never forget it. It was William's first full conversation.

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.

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!

I mean, seriously?!

I am going to start a 'series' (get me!) about things that happen that make me think 'I meeeeaaaan, seriously?!'

I mean, seriously?! Thought 1.

Our Government are trying to save money because of the mass of debt they have managed to build up. Fair enough but someone should probably tell them about St Ann's Hospital in North London.

I receive a letter in the post telling me William is due for a revue appointment with a number to call. I call said number and explain the letter to the receptionist.
She says: 'I'll send you an appointment in the post'
Me: 'Can you tell me when it is for?'
Her: 'No, you'll receive a letter in the post'
Me: 'And if I can't make that appointment?'
Her: 'Call back and we'll send you another appointment'
Me: 'Right'
Me (in my head): thatisthemoststupidstystemihaveeverheardofwhatareyouanidiothowdoesthatevenmakesenseyouarewastingsomuchofmyprecioustimeandyou'veruinedmydaybymakingmemad

So, just so you are clear, the NHS, in their job culling, hospital closing down, cost cutting ways have approved a system where
a) a letter is sent out. COSTS - paper, ink, energy from PC, energy from printer, labour costs, postage costs
b) I call them. COSTS - my phone bill
c) another letter is sent out COSTS - paper, ink, energy from PC, energy from printer, labour costs, postage costs
d) I probably can't make that appointment what with all the other appointments, speech therapy, sign language lessons, teacher of the deaf lessons, playgroups, swimming etc, so I make another call COSTS - my phone bill
e) yet another letter is sent out. COSTS - paper, ink, energy from PC, energy from printer, labour costs, postage costs

I mean, seriously?

Why not call me, offer an appointment and we can discuss and conclude right then and there? Fools.

A corner turned

I talked a while ago about how William has been refusing to wear his hearing aids. I think he started pulling them out about 2 months ago and we haven't had them in for longer than about 3 seconds at a time since. We tried everything; being nice about it, being mean about it, being strict about it, bribery, treats, threats. Ev-ery-thing. And it always ended up in William crying and more often than not ended up in me losing my temper and crying and sometimes Shaun doing one or other or both of these too. So we gave up for a little while. Tried occasionally but more or less resigned ourselves to this period of 'self expression' and concentrated on signing (which has come along 3-fold over the summer so no time wasted).

And then today. Today was the day it all changed. Today Will wore his aids for 3 hours this morning and 4 hours this afternoon. Sure, he pulled them out every now and then but we put them back in and he continued about his business. No-one has cried. No-one has lost their temper. It's day one so I am anxious and patient and excited and nervous and very very pleased that even if tomorrow doesn't bring the same, today did. It feels like we have turned a corner.  

But the overwhelming emotion I have felt today is, surprisingly, sad. And it's taken me a while to figure out quite why. It started as soon as Will walked into the kitchen with his hearing aids in so that should have been my first clue. I am happy he is wearing them, of course. I am happy because he can now access more sound and speech. I am happy because he is no longer fighting us about it. I am happy because he is happy. But I just feel so so so sad that he has to wear hearing aids at all. I just can't shake it.

When we were in Cornwall for a week, we stayed with two other families. He didn't wear his aids and at no point did we tell any of them about Wills hearing impairment.

We spent this past weekend away with some old friends and some new ones. No hearing aids and no-one talked about his hearing.

When we were out today and he had his hearing aids in, I could see people looking at them and all I could think was 'what are they thinking about me?'.

I have talked to you before about the heavy weight of shame I carry around with me and I guess what I am trying to say now is I thought it might have moved on, lessened somewhat. Since writing this blog, I have felt a huge weight lifted from me. Talking, writing, processing has helped me sleep better at night and laugh more during the day. I thought I was feeling better.

But turns out, it wasn't the blog at all. It was just the lack of that brutal physical reminder that is the actual hearing aids. They were gone and so was my guilt. And now they are back and although I am very, very happy. I am also, once again, utterly distraught.

This guilt business is going to be harder to shift than I thought.

Such a shame

I feel like I need to point out that I love my son. To me he is everything. He is the smartest, funniest, cheekiest, most handsome boy there ever has been. And I love him more than I ever thought it was possible to love anyone. And now this is the part I say 'and I wouldn't change him for the world'. But I would. I wouldn't change his temper, or his fierce determination, or his need to throw half his lunch on the floor and I wouldn't change his beautiful ginger hair even though I lose sleep over worrying about him being bullied at school.

What I would change is the fact he can't quite hear what we can. He's not profoundly deaf, just partially. This is supposed to inspire some kind of hope in me. 'He has got some hearing though' people say. As if that makes it better. As if that means that just part of my heart is broken, not all of it. Even if he does learn to talk, he might talk 'funny'. He might sound like a deaf person, because that's what he is. He already doesn't babble like other children his age. It's more of a grunt. He will never be able to listen to an iPod without everyone else listening to it with him. He can't play sport because what is 'wrong' with him will get worse if he hits his head. No rugby, no American Football and soccer only if he wears a helmet. He will be that kid that wears a helmet in PE. He will be that kid who wears hearing aids. He will be that kid whose iPod is laughable loud. He will be that kid that talks funny. He will be that kid who doesn't hear the mean comments the other kids make about him.

When I think about all of these things, and the hundred more that cross my mind every time I look at my beautiful baby boy I feel ashamed. Ashamed of his hearing aids. Ashamed of his funny sounding babbling. Ashamed of the fact he is deaf. I am so very very ashamed. And then I feel ashamed of being ashamed of someone so very wonderful. But it's not him I am ashamed of. It's myself. I am so ashamed that I gave him less of a chance at life than any other child. I failed him from the beginning. Denied him a world of experiences.

Now I know that you are all screaming 'but it's not your fault!' and you may well be right. Despite a barrage of tests, we still don't know why William has dilated vestibular aqueducts. Perhaps we never will. But the facts of the matter are that I built him and even though I can see in my head that it is not my fault and nothing I did or did not do would have made any difference, in my heart I will never ever be able to forgive myself for letting my baby down.