When you’re born with a genetic disorder, understanding that you’re different isn’t this sudden epiphany of realizing there’s something wrong with you. 

At first, it feels like there’s something wrong with everyone else. You notice all of the other kids wearing shoes with laces, and you feel like a fucking genius, you can’t believe how silly they are for spending ten minutes each morning tying those laces up – when they could just wear velcro shoes like you and be done in seconds. 

You imagine them missing key plot points in Yu-Gi-Oh episodes every morning because all their focus and energy is concentrated on tying up their shoes. You go up to them, show them how quick and simple your velcro straps are. You make them listen to that satisfying, crunchy sound and feel totally and utterly superior. 

Then one day your friend’s laces come undone at kindie and you see him kneel down and tie them. And it only takes him two seconds. And you realize that this arduous, ten-minute, fine-motor ritual you’ve imagined all your friends going through each morning with their silly lace-up shoes doesn’t exist. That ‘ten minutes’ is actually just how long it takes you to tie laces, and that every time you’ve gone up to anyone and bragged about your velcro straps with an air of superiority, you were just pointing out this thing you couldn’t do. That your smug lifehack was just a workaround for a problem that was singularly yours. 

You begin to wonder if all those other things you just assumed your friends had to do in their spare time… you wonder whether those assumptions are wrong too. Maybe they don’t spend an hour a week with an occupational therapist, testing brand after brand of pen to figure out which is easiest to hold. Maybe they don’t spend 20 minutes every evening blowing into a tube and trying to make a little ping pong ball hover in a canister to help strengthen their breathing. Maybe they’ve never felt cold ultrasound gel slick their chests as a cardiologist preps them for an ECG. 

Maybe it’s actually normal for a kid to never know what their heart looks like – that you are the odd one out, because you’ve seen that grainy black-and-white peek inside yourself so many times you know exactly which chambers flow into which. You realize, with agonising clarity, why all your friends pick up their crayons and draw love hearts completely wrong. 

They actually think that’s what a heart looks like. 

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