Both Ends Of The Spectrum….

There are some days when it all goes well. There are some when it all goes badly. I can pretty much live with both of these; my emotions can handle extremes pretty well.

What I really struggle with is when you have a day which is both phenomenal – and I mean mind-bendingly, awe-inspiringly brilliant – at the same time as being dreadful in a way you had never even considered.

I went to Alice’s Parents’ evening this evening. I’ve said it before on here – and there are parents of children out there like Alice who will know what I mean – but to hear her teachers saying how well she is doing – not well as a deaf child, but well as a thriving, cheeky, bright and intelligent child – just about finished me off. I know they read this blog and I hope they will forgive my bleary eyes. It was a wonderful thing to hear. Proof that all Alice’s battles and hard work had been worth it. Vindication, dare I say it, of our decision.

Alice is a star. She is remarkable. She has come so far and we are so proud of her. We couldn’t be happier.

But……..and there had to be a ‘But’……

Alice’s ‘new ear’: the implant she had fitted two years ago, has failed. Cochlear have had a well reported issue with a bad batch of N5 implants that let moisture in and then failed. It usually happens between six and 12 months so we thought we were clear……sadly not. Alice went along to George’s today to find out why her processor had been flicking on and off and why it wouldn’t connect at all in the past day. Now we know. Bugger.

So this means a new implant, a new surgery and more running to stand still. Bless our little girl.

Imagine just for one moment that someone switched one of your ears off. Imagine how difficult and disruptive that would be. Imagine now that your hearing wouldn’t be reeturned to the way you knew it for at least three months: 6 weeks until surgery, 4 weeks recovery before switch-on and then several more weeks adjustment as the brain re-learns. I can’t imagine how it must be for our littler Alice. As ever, when told she was having another surgery and a new ‘magic ear’, Alice just shrugged and asked if she could have a biscuit……

Surgery date will be confirmed tomorrow we are told. They couldn’t actually do her the same day as Oliver………could they? It has been floated out there as an option…..

Whatever the outcome, she is still our perfect little fighter. We are so proud of her and her achievements yet reminded, so cruely, about the fragility of her hearing. Would that she took some words of her own advice:

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Let the Countdown Commence…

So we have a date in about 8 weeks time. There are few words to sum up how we feel but generally it’s ‘sh1t’ – on so many levels…. and even between the two of us (and of course anyone who has met us knows we agree on everything………..well publicly at least).

I’m not usually potty-mouthed or a writer of profanity, so why that particularly word? Any parent who has been down our path will understand, but for the rest of the world, here goes:

Ollie doesn’t have to have the surgery. His life will be different, but he could grow up in a world without sound and we could sign and in many ways it would be a rich and fulfilling life. This was the only choice open to parents like us decades ago. Make the best of what you have and do your best. In that sense, the surgery is optional. It is not a life-threatening condition, merely a life-altering condition. But we want him to hear. We want to approximate the life we thought he was going to get.

Ollie doesn’t have to have the surgery now. Alice was two when she got her first implant and I think we could all agree that she has certainly made a success of it. At two you have a much more developed brain and a better understanding of the world. But current research shows that progress with a cochlear implant is a bell curve (and as a good statistician I know) you can have outliers, you can have fairly fat curves but those implanted before one have the best outcomes. At one Ollie will have less of a speech and language delay; his brain will still be elastic enough to mold itself to aural not to visual language and frankly a one year gap is easier than a two year gap; the smaller the gap the less hard we have to work.

It’s a big operation. He’s tiny – well not for an nine-month-old, but nine-month-old babies are still small. He’s around 8kg and his tiny head is still small enough to sit in my hands. He can’t look after himself and won’t understand why he can’t eat, why there’s a big bandage, why he’s wobbly and being sick. We can’t imagine waving our little boy away for anywhere between five and eight hour’s of surgery and praying that it all works out. We don’t like leaving him for a second; seven hours (probably with going under, testing and recovery) is far too long not to hold him and know he’s safe. I can not imagine how we will fill the time without him. I think it boils down to this. We know surgery is the right option and the right thing to do. We know he will benefit from it and it will open up the world to him. I just wish it happened yesterday, so that I don’t have to deal with it.

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Let’s all wish him well. We know his big sister will be holding his hand through it all……

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