Having a child with special needs affects the whole family.

Having a child with additional needs changes a family.  I think you become more insular as no one can truly understand how much your life has changed.  We are not the same people, same couple, same family as we were before our special boy, Hugh, was born.  Our priorities have changed.  Our needs have changed.  Hell, even our political views have changed.  It’s not all bad though.  Yes, I am beginning to feel isolated from even my closest friends, but in turn, we have grown stronger as a couple, talk more openly and rely on each other more.



My overriding concern has always been though, the effect having a brother with special needs will have on my eldest son, Sean.  He is nearly three and I worry almost as much about his future as I do about his younger brother’s. Will he get bullied for having a brother that is so ‘different’?  Will he feel neglected because his brother demands so much care and attention?  Will he be embarrassed by a brother that can’t walk or talk?  Will he be jealous…

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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