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#teammikaere

On getting fitted for a wheelchair

By 16th May 2018 No Comments

When you think of a wheelchair, typically you think of a seat with giant wheels, where you self propel yourself forward. We see them on tv, in movies, we see them in hospitals, we see them on the street. That’s what I thought of when we first got assessed for special seating. A lovely lady named Mary came to make sure Mikaere’s buggy was supporting his body enough. Turns out Kai is very very tall and is swiftly outgrowing his buggy. Kai’s not even two yet and when he’s all strapped in his head brushes the top of the buggy. That’s not the main problem. The main problem is he’s very long and there’s no lateral support for my low tone baby. You can tell when he’s not strapped in, because he slumps forward, and kind of rolls to one side and his behind is on the bar.  Womp.

So. We took our very long baby and made a visit to the Wheelchair Adaptive Seating services at our local hospital.

I’m not ready. I’m not ready for a wheelchair. I feel like we only just got that magical moment in supermarkets where everyone peers in and delights at how beautiful Mikaere is and THEY DON’T KNOW Kai has this terminal and rubbish metabolic disorder. For a few moments in the supermarket, I get to feel like a ‘typical’ parent, rather than a special needs one. I enjoy the ignorance of strangers – it’s all so refreshing. No odd stares, no comments, no pity or platitudes. It’s beautiful. Strangers love on my baby and tell me he’s beautiful. It’s the only moment of what I imagine neurotypical normality to feel like.

We’ll lose that with a wheelchair. And I know,  I know the wheelchair designers try. They take a pram base and put some supportive seating in, instead of the pram seat. They give it a giant cute canopy covered in dots to try disguise it, but then they stick some medical paraphernalia on the frame. Here’s a structure for the oxygen tank, the suction machine goes here, and if he needs a vent then that would bolt on here. What happened at the end was less pram and more medicalised everything.

Just blaaaaaaaah. I’m not ready for a wheelchair. I’m just NOT.

There’s also the small matter that our current buggy (the Bob Revolution Pro) is an epic epic buggy. It’s the buggies of all buggies. I spent weeks researching when I was pregnant and we were so lucky to get it. It’s designed for running and it has suspension and it’s got three wheels. It’s perfect for all sorts of walks. Walking along the river in the dirt tracks, or mud if it’s muddy. Country walks when we’re out visiting. Across fields. Running when I want to go for a run. The wheels come off if we’ve packed the boot too full. It’s just the best buggy. It’s the best of all the buggies.  By comparison the pram base of the wheelchair is good for inside and pavements. It’s no Bob. Not even close.

While I know we’ll have to switch at some point, I know the second we do our freedom for where we can take Mikaere will be halved. Just. Blah. Blah to this. Blah to more medical crap and less freedom. But it’s not the jobs of the wheelchair engineer ladies to deal with my emotions around “upgrading” my baby from a typical buggy to a wheelchair, so I plastered a smile on my face and let them adjust the chair around Mikaere.

The chair pictured isn’t the right size for Mikaere, it was used for measurement purposes. We haven’t ordered his one yet. I’m putting it off. There is still half an inch of space between Kai’s head and the top of the buggy and while he still fits I’m going to cling to the pram we have. Hey ho. I’ll keep you posted on the new wheelchair as things develop.

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