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…

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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