That first visit to the hospital, when you couldn’t see anything at all, I promised I would do everything it took to get you the help you needed. To give you options which were the same as anyone else’s.
I insisted on being referred not once but twice until we found you the best doctor, the doctor people got on a plane for, the doctor who knew everything there was to know about our condition, who could suggest treatments and surgeries that even the nystagmus mums groups on Facebook didn’t know about yet, despite their collective knowledge of everything Google has to offer.
Two years ago, this doctor, this doctor I have the utmost faith in, did what he called ‘a bit of cut and paste’ on you.
So blase, as he took a scalpel to your eyes. But even as we shuddered, that’s what we wanted-it meant he did this every day.
But the results didn’t work out exactly as we’d hoped.
Your head still turned, your eyes wobbled even more as you learned to read books and study things up close. You were growing up, and the surgery hadn’t worked as planned.
“A repeat surgery is risky”, they said.
“It could cause side effects”, they said.
“Double vision”, perhaps.
“Let’s do a test” we agreed, nervously.
We held your hand as you slipped under anesthesia again, this time so they could put needles into your eyes, temporarily freezing your muscles.
It sounds futuristic! It sounds amazing! What a time we live in!
(It sounds awful. I won’t think about it. Motherhood doesn’t change just because medicine does.)
When you woke up, it didn’t take long to see that it hadn’t worked as we had hoped it would.
Double vision. Frustration. Exhaustion. I can only share two of those with you.
“It will wear off”, they say.
“Just two months”, they say.
But two months to you, is an eternity. Waiting five minutes for the iPad is an eternity. Two seconds while I get you your snack is forever.
Two months is an age where you learn that life can be hard. And takes energy you shouldn’t have to find. Not at six years old.
So they’ve patched your eye, and they say we will wait and see. But it’s me who waits, and you who can’t see. And they? They can’t do anything at all.
But I know. I know that this was a test which went badly. No positive effects to speak of. Just a ‘phew, it’s only temporary’. A pat on the back that we didn’t make it worse long term. That it will wear off.
And when it does wear off?
Your head will still turn.
Your eyes will continue to wobble.
Life will still be harder than it could have been.
And there’s nothing more that these doctors that people get on a plane for can suggest to help you. No more chances to give you the same options as everyone else.
And so I say, in a bright voice, Rapha, wobbly eyes are our superpower. You and me? We are superheroes. And you? You are my superman.
And we wobble our eyes and our faces together in the hospital waiting room like maniacs, and you laugh and laugh and I force my face into a smile and am pleased for a moment that your eyes are patched and you can’t see the tears in my own.
Because I don’t feel like a superhero. I feel like I’ve let you down.