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…

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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