Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

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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