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…

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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