A Letter to the Experts.

Dear multitude of doctors / specialists / experts in your field that we have seen in the last 36 months,

Hello. I’m R’s mum. You might not remember who I am, although I generally see you biannually. That’s fine, you have plenty of patients, I’m sure only a handful stand out, and even less so by name. As a kid, I always took it for granted that my optometrists and the like knew my name and age, not supposing that the file on their laps acted as a subtle cheat sheet. It’s one of your many mythic properties, to remember and care for everyone individually.

But now I’m grown up, and my son is the patient. And while I don’t expect you to remember that he doesn’t like to speak in new places so there’s very little point you asking him if he likes cars, or that we don’t actually use that particular obvious nickname so he wont answer to it, I do expect a few things.

I expect you to remember what condition he has, and what you told us last time. It’s easy really, it’s all written on that very same cheat sheet. After all, we’ve been sitting in your waiting room for nearly two hours, another two minutes wouldn’t have hurt while you scanned your own spidery writing from six months ago. In contrast, I don’t need to be told as if for the first time that my son has Nystagmus, as that’s as obvious to me as you telling me his gender by now. I know his condition, I live it every day. That patronising explanation of what the condition means and what areas it may affect is a bit unnecessary, as after all, your notes would tell you that I have it too.

If I’m meeting you for the first time, there are a few ways to ensure we can be friends for life. Because I’m already your biggest fan, you’re helping my son. Anything you can give us in the way of advice, support and help is worthy of the boatloads of gratitude I continually give to the amazing people who work in our healthcare system. So it takes something out of the ordinary to shift my adoration in a first meeting. I’ll warn you from the outset so you can keep my boundless respect. Please don’t ask me “what’s wrong with” my son. Nothing is wrong with him. He has a condition. If he wasn’t too young to understand that comment, I would be outside drafting my letter of complaint right now.
Please don’t address my scepticism with I’ve been doing this for years… because all a mother hears is the silent …but not with my child, which is so easy to end the sentence with. Your years and your credentials mean nothing to me, if you cant try and get to know my kid as an individual.

Please don’t laugh and say “That’s the first time I’ve heard that one!” when I tentatively mention that another doctor has said something  that differs from your point of view. If I can’t trust them, then ipso facto I can’t trust you. And if I can’t trust any of you, and I don’t know who to believe, then you’re saddling me with decisions and choices that I have no way of making on my own, and taking away the pure relief of handing over at least the medical side to what should be wiser heads than my own.

Try not to judge me instantly. I’m a mother, worried and proud, but that doesn’t make me hysterical and biased. I work, and enjoy it, but that doesn’t mean I neglect my son or don’t want to put the effort in. I’m a person, impatient for progress, but that doesn’t mean I’m looking for a cheat or a quick fix. And if I am guilty of any of the above? That’s okay too, because you don’t know my whole story.

You don’t look at my son with my eyes. You can’t see him, tiny and blind, with parents hopefully cooing at his sightless face, hoping for a response that he even knew we were there. You didn’t sit at home with me, too scared to go on play-dates with other excited new mums in case they asked me why my five month old didn’t smile. You didn’t share my joy when the smiles came, the movement came, the speech and understanding came at long last.

So if I want more information than you feel like explaining to my layman’s ears? I want more time than the ten minutes you’re allowed to give me, or more estimations than you’re really supposed to divulge at this stage? Humour me. Answer me. Don’t try and distract me away from answers to legitimate questions which you’ll forget as soon you close his file. Because I’ll take them home with me to fill my evenings with, for six more months until I come back resolved to ask them all again. I’ll worry and stew over your poorly chosen words and ambiguous predictions for the year ahead, until my friends and family are bored of hearing the same confused summaries.

He’s just a file to you. I can’t make him be anything else, and I’m glad. I need you to make the cool headed decisions and uninvolved assessments that I can’t ever make, and wouldn’t want to. But I’m not a file. I’m a mother. And I’m still here when that file closes. 


Some people dont like it when mothers show off about their children being “advanced.” Often these people are other mothers, and sometimes these people dont have kids of their own. They find the stories of mini accomplishments and milestones met irritating and arrogant, and often unnecessary. “After all” they say, “all of our kids are intelligent in their own way, and you shouldnt make other children and parents feel bad just because they might be slightly behind.”
Some people take it a step further, and think we should never brag about our kids at all, even when they are not early at something, because it only serves to make them conceited and/or give them complexes about what they can and cant do.

If you think you’re one of these people, you should probably stop reading. Because I’m a mother who may be about to show off about her child. It may be embarrassing to admit it on a public forum, but I’m actually a mother who cried real tears this morning in front of absolute strangers while watching my 18 month old at a music group.

Oblivious to all around, (as he so often is) I watched as my son tracked and followed bubbles around the room, reaching up to point and pop them with a room full of other kids ages 1-4.

Bubbles. You’ve seen them right? Those entirely clear, floaty things that are pretty much INVISIBLE.

And I let myself cry. That my tiny baby boy, who once upon a time couldnt see his fingers move up to his face, and would jump in surprise when his parents leaned down to kiss his forehead, and who a year ago was giving us his first real smile, was standing in front of me proving all my doubts and fears wrong.

And so as I watched him walk into a wall and fall flat on his face in his eagerness to follow a floaty shiny circle of nothingness through the air, I’ve really never been more proud.

Hey Four-eyes.. Finish your bottle, it’s bed time.

My 13 month old recently got his first pair of glasses. It hasnt been an easy ride. Firstly there are our own issues as parents. The emotional drama of getting used to giving specs to such a small child, and realising that for the rest of his life they will be something he has to rely on, and hoping that he never gets teased. Knowing that just as for me, glasses are the first thing I reach for in the morning, and the last thing I take off before I close my eyes to sleep, his reliance on them might be even more dramatic. (Not that I know how, as I have issues taking them off in the shower until I’ve lived in a place 6 months or more. TMI? 😉 Sorry.)

It’s no longer unusual for a child as young as he is to have glasses. Look around in the street and at your kids schools, and you will see plenty of kids under 5 sporting the finest in NHS visual aids. Some have straps which go round the head (seriously geek chic) others like R’s have curly ear frames, some might even be designer frames, (glance down, these kids are probably wearing uggs also.) but is has definitely become more common. However, since glasses became a talking point between us and our various doctors, I have recieved a lot of the same responses.

Glasses? Really? They do that for babies?
Glasses? How will you keep them on?
Glasses? Won’t that annoy him? (less tactful types.)
Glasses? Adorable!

This difficult choice has been much easier for us to grasp given the facts which have surrounded his visual impairment. All newborns are born virtually blind. Within the first few days, their vision improves so that they can see about as far as their mothers face when being fed. Over the first few weeks, it improves further, giving them their first glimpses of the world around them, teaching them security in their surroundings, and the ability to acquaint themselves with what is normal and familliar, and what is new and different. Each new step in vision, be it distance, or colour, or clarity, is a stage which affects all the other areas of development, and gives our children a bit more independence and understanding of their world.

As many of you know, although our son was born as blind as the rest of us were, it took somewhat longer for his eyes to mature. Until 5 and a half months, R could not see anything at all. Reliant on his other senses, he became accustomed to his surroundings, but at a much slower pace than his peers. While most mothers are eager to recieve the knowing smile that their child gives them between 4 and 8 weeks, I was given my first smile from my son at almost 6 months. The same is true with eye contact. At 7 months, when most babies are sitting up and playing unaided, and some may be starting on the road to movement, my baby boy was lying flat on his back, barely trying to lift his head up.

At that point, glasses were not an option. He didnt have a refractive error. In fact, aside from his nystagmus, which is the way his eyes move from side to side constantly during his waking hours, there was no error at all with eyes. If someone has suggested a way to improve his vision, we would have jumped at the chance. Anything to have our son look at us, smile at us, interact with us in any way at all.

And then God gave us our own incredible miracle. Pokeach Ivrim, our son was given sight. Day by day, we saw incredible leaps forward that made our jaws drop. By 9 months he was rolling in both directions, by 10, sitting unaided and playing with toys. By 11, crawling, and by 12, standing. At almost 14 months, he now walks around furniture and is reaching all the physical milestones that he should be at his age. Adding this to the new blessing of sight itself which meant he could interact and play with us, he was unreconisable as the helpless boy we watched struggle for so many months.

His vision is now poor for his age, but certainly manageable. As he gets older, we will know more about what and how he sees. Hopefully by the time he starts school, all his other development will have caught up, and he will be no different from any other child in his class.

So yes, glasses are a big deal. It’s hard getting him to agree to keep them on for longer than five seconds. It’s frustrating how every time he reaches up to explore what is on his face, he leaves baby sized fingerprints over the lenses, meaning I have to take them off and clean them. It was a challenge for us as parents to accept that he needs something on his face so constantly and obtrusively, when to us, his sight is so incredible already. It still takes a lot of effort for me to put them on him, when he seems to capable without them.

But when I think about my happy 5 month old, who would grin at the ceiling even though he couldnt see anything at all, who would play with toys with only his hands, his face turned in the opposite direction, I know that he has already come so far by himself. Anything that we as his parents can do to make the next part of his journey easier or less tiring for him, is nothing short of a priviledge.