This week I'm grateful for … answers

“I’m sorry that the news may not be what you were hoping for,” the neurologist’s voice trailed off as we moved towards ending our phone conversation.

It wasn’t until he said this that it even crossed my mind that I’d just received ‘bad news’. We had some answers, which was better than no answers. I had convinced myself that no answers was worst case scenario and any other news we could deal with.

The outcome of the MRI, and our almost three weeks of waiting, is that J’s facial nerve on the right side seems to be either completely absent or 95% absent. Leading to the conclusion that his facial nerve palsy is congenital and his nerve just didn’t develop as it should.

As I’ve said before ‘just one of those things’.

It didn’t stop me from getting off the phone and having a big cry, but it was one of those relieved, transitional cries that you have to go through to get out all your fears and realise that everything is going to be okay.

It also didn’t stop me from googling ‘when the facial nerve develops during gestation’ to somehow prove to myself that I was to blame. Or maybe to absolve myself of that guilt, I’m not entirely sure.

To the doctor, this diagnosis is a bit of a ‘end of the road’. If the nerve is not there, or undeveloped it can’t be fixed. And doctors like to fix things. But even if the nerve was damaged and there was a chance it would repair itself, at this stage of the game we wouldn’t be looking at a full recovery of the nerve anyway.

There really isn’t alot known about facial nerve palsy and the process to ‘fix’ the nerve is a very complex operation that requires micro-surgery, nerve grafting and a great deal of variance in possible results. It’s not something we would consider until Jarvis is old enough to make that decision for himself.

But today I’m grateful for answers. I am grateful for my little boy being born to me just the way he is and I am grateful for the chance to teach him that being different is not a weakness, but a strength.

 

Head over to Maxabella Loves … to see what people are grateful for this week.

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12 thoughts on “This week I'm grateful for … answers

  1. wow, a gorgeous little guy you have there, how lucky he is to have you there with him, teaching him that differences can be strengths…loved reading your take on this, and your gratitude to receiving answers is inspiring

    Gill xo

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  2. oh Bel, I’m glad you got answers…. Jboy is perfect just the way he is.. x

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  3. Oh yeah, I get what you mean. I totally understand that just having an answer is good enough at times. It allows closure – in the sense that you can move on now, and plan accordingly instead of just hanging in limbo. Our 17mth old son has had 3 coughing fits that have stopped him breathing/turned blue/gone limp. We’re now in the process of finding out if there’s anything wrong with him to cause this, and so far, nothing. All symptoms (and lack of other ones) point to it being a trachea problem, yet first lot of tests (X-rays and screening) show that his airway is good and strong and normal. Limbo. Hate it.

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  4. I’ve always thought answers, even when they’re not the best, are comforting.

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  5. I hope you’ve stopped googling to find a way to blame this on you. your boy is beautiful and it’s very wise of you to let him make the decision when he’s older x

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  6. Hi guys
    Sum outcomes r hard!It”s easy for me to sit here and say it will b o.k.But at the end of the day we all have to go through our emotions.He is a handsome little bloke.,with your love and guidance he will thrive.Hope to see you guys soon xxx

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  7. Oh sweetie, totally understand the blame game… and perfectly natural.

    You have the best attitude towards this, have a bit of a cry and get on with it.

    For that you are awesome.
    x

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  8. This is very interesting to me. My husband’s family pass on a genetic condition called ‘Mobius syndrome’. It basically means that the facial muscles just don’t work at all. So his father and his brother and his niece are all unable to smile or move their faces at all. It creates a lot of problems with their eyes (as they don’t close properly). But the biggest problem is the social difficulties that can be experienced as they can’t smile… which doesn’t seem to be a problem for your little fella judging by that photo of him! What a charmer!

    But, know this, they are all healthy, happy people. His father is one of the most amazingly social and wonderful characters you could ever hope to meet. I think his condition made him become more vocal and bright and shining as he was determined to make up for his lack of a smile. It takes all kinds to make a wonderful world. x

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    • That’s so comforting to know. I’ve met a few people online with Mobius and they too are wonderfully funny and interesting people. Thanks for the lovely comment. x

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  9. Well finally the doctor called back, after the long ‘waiting period’ and you leaving messages/emails. Well what can people say to you guys and J Boy? That he is perfect the way he is? (which he is). He will ‘know’ no different? etc etc. I know that’s what you will get from people. But every child/person in this world is different in many ways, from looking different, eating different foods, speaking a different lanuage, having different colour skin. But that’s what makes us all very special, and J Boy is no different. We love him xxx Oh Ham said to say hi to you and J Boy.

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