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…

Normal life resumes

A week ago my son stopped breathing. It wasn't the first time. Or the second. It wasn't even the 100th. It was probably in the region of the 250th-300th time. I'm not sure; he's done it a lot. And I stopped counting a long time ago. Some are short, only 30 seconds. And some go on for what seems like an eternity, second after second, ticking away.

It doesn't get any easier, watching him not breathing. It's different to the first time, of course. I know what to do now, there are steps I take, procedures I follow. But the emotions don't change, I'm still as scared as I ever was. Some times are worse than others, the longer ones especially, but every single time it happens I'm filled with the fear he won't breathe again. It's a distinct possibility. It's a strange and scary way to live.

He upped his game a bit this time, managing a full 16 minutes with only 1-2 breaths. The rest of the time the nurse used a bag and mask. I watched as his chest rose and fell, his lungs rhythmically  filling with oxygen with each squeeze of her hand. She kept his brain alive until the sedative hit the power off switch in his brain and he finally took a breath. Those were the longest 16 minutes of my life. 

He's home from hospital now and we are hoping a change in medication will prevent it happening again. It's a roll of the dice, a chance we'll take, praying the odds are in our favour.

And so normal life resumes. But it's hard to switch back when you've lived on a knife edge. It's hard to turn your back, to make tea or to answer the door or to go to the bathroom, when you're scared what you'll find on your return. In time, the anxiety will fade I know. I'll be able to hang the washing out again without running in to check, or have shower without needing another person to watch him.

But I know from experience that the nightmares will remain. 

The sound of the sirens, ever closer.
The white, the grey, the blue of his lips, his fingers, his face.
The whoosh and hiss of the bag and mask, breathing in, breathing out, breathing in, breathing out.
The silent sobs at his bedside, as I prayed "not now, not like this".

Comments

  1. Oh hon, I couldn't read and not comment. I'm sure there are so many of us who will identify with this, but my heart is hurting for you. Lets hope the new meds work. You know where I am if you need me. I don't sleep much xxx

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  2. I have been following on Facebook via Candi. I remember when your little boy was born. He has grown so much and is so so cute. Thinking of you. x

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  3. Thanks Renata. Crossing my fingers that they work too. I appreciate that - there's some comfort in knowing we're not alone, though it's horrible that so many families have experienced similar things.

    Thanks Bright Side. He has grown so much, it's hard to believe he is nearly three and a half now.

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