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…

Dear Doctor

Dear Medical Professional,
You will ask about his medical history,
And I will repeat the story I have told 100 times or more,
The details fine tuned to the essentials I know you need:
He was born full term,
He has a 7 year old brother who is fit and well,
He is allergic to penicillin. 

You will ask me what happened,
And I will answer:
He is 6 years old.
He wasn't breathing for 7 minutes.
I gave him mouth to mouth.

I will hand over a careful typed piece of A4 paper.
It will tell you his hospital number,
The things he is allergic to,
A list of medications and doses.
You will take it and smile.
You'll tell me I make your job easier.

I will stand calm,
And in control. 
You see my demeanour,
my hospital bags packed and ready,
And you say,
You've done this before.
I'll nod and say many times.

But remember this;
That 6 year old is my baby.

That boy with the oxygen,
And the wires,
And the tubes,
Is my son.

I watched him turn blue.
The first time,
The fifth time,
The hundred and fifty fifth time...
It was still my baby.

My answers may be more polished,
I may appear more organised and calm.
But he is still my baby.

Sometimes I lie my head on the bed beside him in A&E and sob huge silent tears onto the starched, white sheets.

Sometimes my hands shake so much, I hold them tight between my knees while I'm answering your questions.

Sometimes I hold my breath just to stop myself screaming, my throat burning from the effort of holding it in, a single tear escaping and betraying me. 

So please doctor, registrar, paramedic, nurse... don't be fooled by my tough exterior.


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