I needed to take TinyPants out shopping for school trip bits and pieces today so out came the chair. I’m starting to get used to manoeuvring about now. Then my stomach dropped….
“Look Mummy, it’s. ..” Oh Shit. Not close friends, but people we certainly know well enough to chat with. I tried the “hello” tactic with nope, I haven’t even noticed that I’ve swapped my sticks for a chair. Totally didn’t work.
I felt terrible for them. He had no idea what to say & despite my assurances that it’s OK, we left with “I’m so sorry”.
That could’ve gone better.
And yet, kids just don’t seem phased (which gives me huge hope for school).
I had a little girl follow me around the shop trying not to stare, even though she clearly wanted to. After I smiled at her she asked me in a proper little person whisper “are you broken?”. Cutest question ever. I said “A little bit.” Apparently, that was sufficient. Kids are awesome.
So, I’m learning a few things that I’m OK with and others not so much:
Let your kids ask questions. They’re curious. It’s quite sweet (& it’s very funny hearing whispered conversations from the kids at school when they see my leg brace along the lines of “cooooool. Your teacher is like the terminator. “. You’d better believe it kid. Especially if you haven’t done your homework 😉 )
Ask me if I need help. Opening doors & carrying things are things I haven’t quite mastered yet. But please ask me first because I’m a stubborn git & I’m probably trying to do it myself 😉
Please don’t push my chair. Just like you wouldn’t bodily move anyone else who was standing in your way, my wheels don’t mean you can move me. It’s bad manners & quite frightening.
Don’t pity me. Or at the very least don’t let on. I have a few amazing colleagues who have called me hopalong or suggest I chase them since I’ve worn my leg braces & it makes me feel so much better that they feel comfortable enough to mock me. I’m not saying I want strangers mocking me (That’s quite mean), but just talk to me like a human? There are days where I have my very own pity party – I don’t need guests.
If I’m in your way, please ask me to move! Seriously, I have wheels. I can move if I’m blocking your way. I don’t mind.
I’m sure there will be plenty more and others are a lot more experienced. But you know, if I’m going to use a chair, I shall accept the label. So here’s the start of my 12 step program:
My name is Holly, EDS has me (poor EDS) and I am sometimes a wheelchair user, or a user of crutches, or sometimes just Roboleg.