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…

Ode to Epilepsy

Epilepsy tried to steal my child.
He crept in and caught me unaware,
Leaving behind a limp and lifeless body;
A blue the colour of the deepest, darkest, coldest ocean.

He tried again and again,
To take my baby from me.
In the dead of night, He’d come,
Robbing the air from his lungs,
And taking a piece of my heart with him each time.

I didn’t recognise Him at first, this Demon,
He wasn’t the epilepsy I knew.
He lurked unseen in the shadows,
And without warning would pounce.
Nowhere was safe.
We lived in fear.
Feeling His evil presence,
Ever near; ever watching; ever waiting

I begged Him to leave;
But He wouldn’t listen.

I pleaded with Him to go;
But He remained.

I sobbed.
I screamed.
I cried.
I waited.
But Epilepsy wanted my child.

Piece by piece He took him,
Hoping I wouldn’t notice as he slowly started to fade.
He took his spirit.
He took his passion.
He took his smile.
And He ripped my heart right from my chest.

But my child is stronger than that Demon.
He fought with all his strength.
And little by little,
He came back to me.
His smile, the sun, warmed my blackened heart and helped it to grow.

And together we stand strong
And determined in the face of Evil.
His disguises have changed;
This dangerous Demon.
But I am no longer scared of the shadows.
I will stand and fight.

You will not take my child.
you WILL NOT take MY child




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