Seeing into the Future.

I’m sorry. 

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. 

Wobbly Wednesday (or ‘What I Saw Wednesday’)

By far the most common question I get asked when I mention that my son R has a visual impairment, is “How much can he see?” Although it’s an innocent question which seems simple enough, there is no clear answer for a child (or an adult for that matter) with Nystagmus, the condition my son and I were both born with, which causes an involuntary eye movement. While sight will vary from person to person, the far more interesting fact about Nystagmus is that it also varies depending on situation, stress levels, schema and mood. As part of Wobbly Wednesday, I thought I’d write a little about our own ‘out of the box’ visual experiences with R, many of which were just as much a surprise to us at the time, even with my own experience with Nystagmus, and bringing up a VI child.

So here we go.

Five times my son could see less than expected. (Yes, even with his glasses on!)

1. As a baby, it was nearly impossible to tell whether R could see in any given situation, but once in a while it was extremely evident what he couldnt see. One day at a lunch with friends, one of the guests was speaking, and I noticed R crawling towards the radiator, which I knew was on, and hot. Not wanting to be rude and leave the table, I uncovered an extremely sparkly charm bracelet I was wearing, and dangled my hand down by my chair legs, at his eye level, moving my wrist so that the sunlight and faux gems could attract his attention and move him away from the heater. I was less than a metre away from him.
R, around 14 months old was sitting up, facing in my direction, but however fiercely I moved my arm, he had absolutely no idea anything was happening. Not knowing I was wearing a bracelet, or that I wanted his attention, with no auditory cues, I may as well have been doing nothing at all. I realised how important my verbal cues had been to him up until that point.

2. I am told all the time what a surprise it is to find out that my son has a VI. He runs, jumps and plays like any other 4 year old boy. Thankfully, he has no fear. But once in a while, this can backfire. On holiday last year, he was almost 3, and we were visiting Hershey’s Chocolate Factory in Philadelphia. The room was large, and it sloped downwards on a walkway and then turned to the right. I told R he could run ahead, and warned him that the floor wasn’t flat, an issue of depth perception that we take for granted, but a person with Nystagmus would find it hard to notice. He took a couple of cautious steps, got a feel for the gradient, and ran down the slope to the end. Before we knew it, he was lying flat on the floor, after running into the metal handrail at the end of the room. it being parallel with the wall, he had not noticed that it wasn’t flush with the wall, another issue of depth perception, and had underestimated how much space he had to go before he needed to turn right. This kind of situation, where he feels like his eyes misled him, can be extremely distressing for a child with Nystagmus, and can cause temporary fear. Completely of his own accord, for the rest of the day in this unfamiliar place, he walked alongside us and did not run ahead.

3. We all know the slightly unnerving feeling of coming across someone in a mask or full costume and not knowing who it is, relying on their voice to give them away. A visual impairment makes this so much more complicated. The Jewish holiday of Purim, (think Halloween for a good VI comparison) means that many familiar faces are suddenly covered. While this is obviously difficult, what you may not expect is how much as small a change as a funny hat or glasses, or a design drawn in face paint can confuse someone who is partially sighted. Last year, R joined in with his friends in dressing up, and was unable to recognise people he saw every day and knew well, because of such simple additions to their attire as a sparkly hat. Friends of mine who knew his condition cottoned on quickly, stooping down to his level and announcing their name when they said hello, (a sensible thing to do with R even in a usual situation) but many people rushed past waving at him, or just said hi breezily, forgetting what a struggle it was for him to recognise them now that they had pink hair, or a huge red nose. By the end of the day, he was more exhausted than I’ve ever seen him, and he slept for close to 15 hours that night.

4. It’s okay, he can sit right at the front.  Another reassurance I get a lot from friends and family. But sitting close up does not help in every situation. (Although it is obviously better than sitting far away!) One good example is the first time we took R to a child’s birthday party, once the kids started graduating from tea and cake and onto entertainers. I sat R directly under the nose of the entertainer, and sat next to him so I could point out anything he might miss. For an adult, the misdirection and horseplay is obvious and predictable, but we forget that our children are seeing all of this for the first time. When the entertainer held his wand behind his back while it flip flopped all over the place, complaining bitterly that he couldn’t find his wand ANYWHERE, looking out into the crowd of children laughing and pointing behind him, my R looked at me blankly. All he could do was follow the entertainers eyes and instructions, which were telling him nothing about what he should be focusing on. The children’s raucous laughter only made him feel left out, which to be honest-he was. Quick tricks with lightning fast fingers meant nothing to him, and fiddly characters looking out of windows and hiding back down again, met with cheers and whoops from happy kids, but confusion and stress from my own. After 5 minutes, he started misbehaving, and after 10, I took him out of the room. His speech delayed, I was moved to tears when he turned to me and said clearly, “I just couldn’t see that.” Nowadays, friends may be offended when I show up late to those kind of parties, bringing him for birthday cake and music rather than the sit down and watch portion of events. But it’s not something which can be solved by him sitting at the front, or another common answer, getting him stronger glasses.

5. Another common struggle is when something isn’t where it’s ‘meant’ to be. R, like I’m sure all VI kids, likes to make his visual field easier to navigate. That means that every single thing has a place. If it isn’t where he left it, even if it is 3 inches to the right, it may as well be in Siberia. As a toddler, he would wait for all the other kids to finish playing with a particular activity at nursery, so that he could put it all away and put it back in it’s right place, for fear of not finding it later. He will talk to me sitting on a particular chair, run off to play, and then run right back to the same chair to show me something else, stopping suddenly about half a metre away from it, because it takes him that long to realise I’m not there any more. If someone appears out of context, where he doesn’t expect them to be, he will not name them until they name themselves. If a person is where they ‘should be’ however, where he expects you to be, he might be able to wave at you from across the room, or maybe even respond if you motion him to come here without words. That doesn’t mean he’s being naughty the next time he ‘ignores’ you, it just means you caught him knowing what was expected of him or in a situation which he found visually easier. Maybe it was a familiar place, maybe he already walked past you and took note of where you are or what you were wearing, maybe he simply slept better the night before and it’s helping his sight today.

There is clearly no easy answer to “How much can he see?” but I don’t mind you asking. I know that it’s a complicated response, and I appreciate anyone who tries to understand it. The only comments I don’t know how to respond to are “Oh wow, he saw that Aeroplane!”  or “I’m sure he recognised me from across the playground!”  because yes, sometimes it may seem like I’m making a fuss about nothing, or that his vision is as good as any other kid in specs that you’ve met before. And some days it is. Which is why most of the time I love how no one has to treat him any differently from his peers. And I’m so proud to know that you can be happy for all that he can see and achieve. But if you happen to come across him on a day where he needs that bit of extra help, I’d really appreciate you knowing how to do that too.

Wobbly Wednesday is today! It is a day of fundraising for better understanding, support and research of Nystagmus and it’s sufferers.
To help, you can Text WWNN14 £ and the amount you want to donate to 70070 or visit https://www.justgiving.com/nystagmusnetwork/donate