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…

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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    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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