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 …

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 never expected that.

Comments

  1. I'm so sorry, and you know for me the comparison is with my son - when he was first diagnosed with aspergers and I thought a bit of social skills training could 'fix' things for him. I had no idea ((hugs))

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