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…

Undiagnosed

I have a son.
He can't walk.
And I don't know why.

He is five years old.
He can't sit up.
And I don't know why.

His name is Hugh.
He can't talk.
I don't know why.

His hair is dark.
He can't eat.
And I don't why.

His eyes are brown.
He can barely see.
And I don't know why.

He smiles a lot.
He forgets to breathe.
I don't know why.


Hugh is happy; he smiles and laughs all the time.  He loves being outside in the wind and listening to music and singing.  He likes little tastes of chocolate and he loves his big brother Sean.

He is profoundly disabled.

I don't know why.
The Doctors don't know why.

Hugh is undiagnosed.








Comments

  1. Have you heard about Bohring-Opitz Syndrome? Please feel free to ask questions.
    www.bohring-opitz.org

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    Replies
    1. Thank you I will certainly take a look and find out more

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  2. This is such a powerful post for Undiagnosed CHildren's Day. It shows the challenges and yet the immense love that your son brings, that every child has such value. Thank you for linking to #SENDBritmums.

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    Replies
    1. Thanks Hayley - I appreciate you taking the time to comment xxx

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