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.

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.

The trouble with decking

Today was the third week in a row that I have lost something between the decking at playgroup. Week one it was my phone. It slipped out my pocket and right through the gap. Shock horror. The caretaker was called and with lots of huffing and puffing (and I'm pretty sure he was mad enough to have blown my house down if he knew where it was) he lifted the deck and rescued it. I laughed. Week two it was a kiddy-clip (a device to stop children from losing their hearing aids if they fall out) that wasn't mine. Luckily the Mum didn't need it and so didn't call the wolf back again. We laughed. This week it was William's right hearing aid. This week I cried. There are so many hard things about having a child with a hearing impairment but I sometimes think the hardest thing of all is the practical side of hearing aids. Putting them in. Keeping them in. Checking if the battery works. Re-tracing steps looking for them after they have been thrown out of the pushchair, sometimes in the pouring rain or howling wind. Sometimes for hours. Watching my son even closer than you watch any child. Putting something in his hand as soon as it goes towards his ear. Using every ounce of energy to play games and sing songs and keep his attention away from the aids. Finding half a hearing aid and panicing about the trip to the hospital to have the other part pumped out if his stomach. Or the vet to do the same to the cat.

Yep, the hardest thing about having a hearing impaired child is the practical side of the hearing aids. Or perhaps it's just because they represent all the guilt, fear, distress, concern, anxiety, and self hatred that is there bubbling under the surface of a Mum who doesn't understand why this happened to her baby.