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…

These Are No Ordinary Wheels


These are the 'pimped up' wheels of Hugh's R82 Kudu wheelchair.  A friend designed them especially for Hugh - they're completely one of a kind.

These wheels catch the eye of many a child (and adult). They run over to point out their favourite super hero and try and name them all. (Go on try - most people will get 5 easily, some 6. If you can get all 8 you're a true super hero fan!- answers at the bottom). If children are staring (as sometimes they do), perhaps trying to work out why he's sitting and not running, rather than feel awkward I can point to the wheels and say 'have you seen his cool wheels?' It's an icebreaker. For the children and their parents.

We chat about Hugh's favourite super hero (it's Captain America) and the films we have seen. Throughout it all Hugh smiles (or sleeps) but there's a connection there. This is a little boy who likes superheroes. Not a little boy in a wheelchair or a little boy with a feeding tube. He likes superheroes, just like me. 

I love that about these wheels. Hugh can't talk but they do the talking for him. They start the conversations for him. They help people see him, first and foremost, not his disability. They make being in a wheelchair cool. They help to include him. 

The thing is though, Hugh grabs the wheels a lot while we're walking. I'd hoped he'd self propel slightly but he's not reached that stage at all. Instead he just holds on. And that's dangerous, because the wheels are turning. So we're looking at different wheels. Smaller wheels. Wheels he can't reach. But also, sadly, wheels that won't have super heroes on. 

No, these wheels don't just get Hugh from A to B, they're a conversation starter, they're a stare-explainer, they're a connection with his peers, they aid inclusion, they're the start of friendships. 

I'll be gutted when they go. 

 
Hugh as his favourite - Captain America

From the top, clockwise: The Flash, Superman, Captain America, THe Hulk, Iron Man (it's his power source - most people get stuck on that one), Spiderman, Green Lantern (another tricky one) and Batman.

How many did you get?

Comments

  1. Adam has Power Ranger wheels. They are very important to us to so I get this post completely.x

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    Replies
    1. Very cool Adam - we are Power Rangers fans here too.

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