The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

The Unwelcome Visitor

Epilepsy made a sudden and unexpected late night call to our house last week.  He hadn’t been invited and I think it was a bit rude to turn up unannounced at 10:30pm while I was enjoying a glass of wine and watching The White Queen.  It was sneaky, I think, to wait until the one night that I’d put Little H to bed without the SATs monitor on but I caught Him on the video monitor all the same.  Little H had had a lovely day at the farm – laughing at the noises the animals made, giggling when the sheep licked the food off his hands.  I’m not sure why Epilepsy wanted to spoil that.  But He was angry and came in with a vengeance I’d not seen in a long time.

He tried to take my baby again.  Three times Little H turned blue. Each time more and more navy than the time before.  His little finger tips nearly black from the lack of oxygen; the SATs monitor screeching its high pitched warnings.  I breathed life back into his lungs and begged him to come back to me.  It’s been 21 months since I’ve had to give Little H midazolam, I could barely remember how much to give – maybe that was why Epilepsy had waited so long; I’d started to become complacent, He thought He’d catch me off guard.  But I did remember, just in time and after four long minutes Little H gasped for air and Epilepsy left his body; weak and pale and breathing.

Little H slept by my side all night; the still and lifeless sleep of the heavily sedated.  I watched and waited; a lioness protecting her cub, ready to pounce should the predator return. And return he did, as the sun began to rise.  First slowly, but growing ever stronger, lingering longer and longer each time.  Trying again in the car on the way to hospital was a sneaky move, but I was prepared – oxygen at the ready.    

At the hospital, first in resus, then in the High Dependency Unit, sedative after sedative was pumped through Little H’s veins, trying to flush the demon out.  But time and time again he tried to take my son with him.

I prayed and I cried and I watched and I waited.  Not knowing what would be left of my son.  Epilepsy had ravaged his brain before – taking his beautiful smile.  It took H two weeks to open his eyes, months to learn to hold his head up again.  Powerless I waited to see what devastation Epilepsy had caused this time.

Once again though my baby fought back. 

Forty eight hours, twenty seizures, midazolam, clobazam, lorazepam and Phenobarbital, two crash calls, ‘bag and masked’ eight times, a collective total of 45 minutes of not breathing...

And this little beauty came back to me.


My brave and beautiful, wonderfully smiley, Happy Little H.



Comments

  1. Dear Epilepsy... you are not playing fair at all. Little H's mum is one of the strongest people I have the pleasure of knowing you wont beat her... so just don't even try! x

    Wonderfully powerful post Em x

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  2. Thanks Mrs K. Hears hoping Epilepsy takes note! Xxx

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  3. Aww and a beauty he is. Well done little H, what a brave boy.

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  4. Thank you. He is a brave little soldier :)

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  5. Lets hope that one day the world will have the answer to this dreadful monster. Keep fighting Little H and mum you are a very strong woman.

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  6. Oh I do hope so Elaine. And thank you xxx

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  7. Em, having a blog catch up and have tears for you my lovely xxx I'm sure you have no idea where you get your strength from at times but I'm damn sure your beautiful boy is more than grateful for it. Sending lots of future happiness to you and yours xxx

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  8. No idea how we manage Jane - I guess we do because we have to, And Little H more than pays us in smiles :D

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