Jet is our eldest. He is three and a bit. He loves cooking, making, sticking, minions, running, climbing and a whole lot more. We must have known when we named him what a bundle of energy he would become, because his name suits him down to the ground, given that he lives life at 1,000,000 miles an hour.
On Tuesday we took Jet for his routine appointment at Moorfields Eye Hospital. He has a condition called nystagmus, which means his eyes constantly wobble uncontrollably from side to side. He is in good company – recently Richard Osman has made it public that he also has nystagmus, which you can read about it here. In Jet’s case, this movement is with him all the time, although it does vary throughout the day, increasing quite significantly when he is tired. It is congenital, passed down to him from my dad, via me.
The movement is fairly noticeable – if you watch someone’s eyes as they observe a train rushing past you get a similar effect. People with this condition often develop their own strategies to deal with the limits it can place on their vision, perhaps by putting their head at an angle or shaking their head when trying to see something in more detail. Jet’s way of dealing with it is to only use one of his eyes at a time. At first, the doctors thought he was developing a squint, as one of his eyes always turns in, but we felt sure that he changes which of his eyes he is turning in. Eventually, it has become clear that he can effectively switch off one of his eyes and just use the other, and he alternates which of his eyes he is using constantly. It can be quite hard to tell what he is looking at because his eyes usually point in different directions.
This is good news, because it means he doesn’t have a lazy eye – in fact his vision is equally good in each eye. But it does mean that he doesn’t have binocular vision, so he can’t tell how far away things are as he doesn’t have depth perception. Also, his vision is not great in either eye, but as this is due to the wobble of his eyes and this cannot be treated, this cannot be corrected by glasses. So, it is lucky that he can see as well as he can. In any case, anyone who has met my boy will know that nothing holds him back! He is very confident in new environments, runs almost everywhere and is generally a gregarious and happy little fella. Having said that, as he gets older it is becoming clearer that he doesn’t always recognise his friends and will regularly go up to a stranger thinking it is one of us, or approach another child in the park thinking it is one of his friends. Usually, he just styles it out. He has already become so adept at coping that it takes some careful study to realise that he is having any difficulty at all.
We first realised that there was something different about his eyes when he was a small baby. I was sort of looking out for him to have wobbly eyes, seeing as my dad has the condition it was always at the back of my mind that he might have nystagmus, but they didn’t wobble. They scanned continuously from left to right, slowly and evenly. At first I thought this was normal, but talking to my friends, none of their children had done this. When he was about 6 months old his eyes started to point in different directions. We went to Moorfields paediatric A&E, knowing full well it wasn’t an emergency, thinking it was probably nystagmus and just wanting to get in there so they would look after him, without having to wait for a referral.
Luckily, this condition does not affect Jet’s health or his ability to do anything he wants to do at the moment. Technically, he has Low Vision, which people often develop as they get older. His advantage is that his condition has been with him since birth and is not degenerative, so he copes very well. If your eyes just started to wobble one day, or you lost binocular vision just like that, you would struggle to deal with it. But this is totally normal for Jet. They will keep checking his prescription as he grows up, in fact this time it had improved a little in the nine months since it was last checked. It remains to be seen how it will affect him as he gets older, but we have been referred to the Low Vision Aids people at Moorfields, who will advise us on how to use resources including technology to help him access things better, for example when he is at school. Also, we have living proof in my wonderful dad that having nystagmus doesn’t mean you cannot have a completely fulfilling, successful life.
It is never easy to hear that your child has “something wrong” with them. You can’t help but feel you would prefer it if he didn’t have to deal with any limitations. Here are some of the things that make me feel sad
- People often ask my husband and me if we have realised that Jet has a squint. I feel perhaps irrationally pissed off about this, but you have to realise that to me this implies that I haven’t looked at my own child for long enough to notice something that literally stares you in the face. Of course, a lot of people want to tell me about how their child had their squint corrected with a fairly painless surgery, and I do appreciate that they are trying to be helpful, but this is not the same as what Jet has. If only it were that simple. There is no cure for nystagmus.
- When Jet climbs into the driver’s seat of our car and asks if he can drive, of course I say no. He thinks it is because he is too little. I don’t want to answer him when he says, “I can drive when I’m big like you, can’t I?” Because the chances are he never will be able to drive and I hate the idea of him being limited.
- When our younger daughter Stella was born, we were thinking of calling her Iris. In a postpartum haze of blood loss and exhaustion I asked my dad if he thought she had nystagmus too, because I didn’t want to give her an “eyes name” if she had the same condition. He looked devastated.
- It used to bother me that his eyes make him look a bit odd – both the wobble and the direction. At a friend’s birthday party someone took a photo of him licking a window and everyone was laughing at it because he looked ridiculous. But in my head I couldn’t shake the feeling that it they were laughing because his eyes were so crossed. My lovely friends would never do that, but kids at school will not be so kind. Now he is a bit older, I feel fairly certain he has the personality to cope with that if and when it happens.
If you have any experiences or thoughts on this that you would like to share, I would love to hear them.