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…

The Wonder of Hugh

When no-one else can understand me ...

A medical mystery
A curious conundrum
Rare
Atypical
Complex

He’s not straight-forward our little Hugh. Or to steal a phrase from a lovely friend he’s ‘Hughnique’

I’ve written before about how I struggled to accept Hugh’s lack of diagnosis at first and how I eventually began to reach a point of acceptance. (If you want to read them you’ll find them here and here)  There are days I still long for a diagnosis – when he’s ill and can’t tell me what’s wrong, when I think about the future too much – but mostly I just sit back and take it day by day. 

He is who he is. 
He’s my wonderfully smiley, cheeky and happy, lovely little Hughie.

Friday 25th April is Undiagnosed Children’s Awareness Day – a day for those who don’t fit neatly in any diagnostic boxes to stand up and be counted.  There are lots of events around the country, a fabulous video – you can see it here, a twitter campaign: #itsamystery and a great blog hop where anyone (not just SWAN families) can share their experiences of, or show support for, being undiagnosed.

This is my entry- short and sweet this year (unusual for me). 

So I’ll leave you with some (slightly tweaked) words from The King himself.  Feel free to sing along.

And when you smile the world is brighter,
You touch my hand and I’m a king,
Your kiss to me is worth a fortune,
Your love for me is everything.
I guess I’ll never know the reason why,
You love me like you do,
That’s the wonder,
The wonder of Hugh.


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