Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

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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