Additional Needs

Running On Empty

Posted by Carolyn Voisey on 1st November 2016 Additional Needs, Advice & Support, Disabilities

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There really isn’t much you can say, no words will take away the pain and heartache of those left behind yet we all feel that we should say something.

Anything to bring comfort, support and love to our friends who are hurting so deeply.

But nothing seems right somehow.

Then there’s the personal heartache of seeing my beloved Dad slowly lost to the ravages of Alzheimer’s and vascular dementia. I didn’t think I could hate anything as deeply as I hate epilepsy but dementia has won that crown.

Seeing my courageous, strong Mum start to give in to her grief as we were given the news that he really won’t be coming home.

The man who has been by her side for over 40 years now needing 24/7 care that she simply cannot provide for him, no matter how much she wants to.

Again, nothing I can say makes it any better but at least I can physically be there for her and the rest of my family, Dad included.

Then I look up and see my gorgeous, amazing little boy.

I already knew he was bloomin’ fabulous but now we know the full extent of his brain malformation his progress is all the more remarkable.

This week his neuro will go to the multidisciplinary panel for the Children’s’ epilepsy surgery network to recommend that Sammy is put forward for a vagal nerve stimulator – in all honesty this is something we’ve fought hard for, for over three years, and tomorrow we should have an answer.

I keep having to remind myself that they are the experts, and that I just have to have faith that they will make the decision that is right for my boy.

I desperately want/need that answer to be yes, because it really is the best chance Sam has to gain some sort of control over the seizures.

Right now, I am trying hard not to put too much hope onto the what may be’s and just try to get through another day of uncertainty.

But after for long of battling for us to get to this point I feel slightly lost having to pass control over to others.

I want to keep busy, but my concentration is zilch.

So, for now, I’m going to settle for having a short walk to the post office, then I’ll deal with the afternoon as it comes.