Skip to main content

Little big man

 Raising a child with visual impairment makes you see the world differently.

At dinner with friends the other evening, I was astonished to see Asa’s best friend Angèle, who’s just a couple of months older than he is, watching TV from across the room.

What’s so strange about that?

Well, for Asa to see what was on the screen, he would have to stand within arm’s reach of the television set.

That had come to seem normal to me.

That may sound weird. But consider some of the other characteristics that we accept as natural for toddlers: short stature, primitive grammar, a predilection for tantrums. And their special, compensating features -- a mania for play; an exuberance that’s almost never found in adults.

The fact is, I’d gotten used to Asa not seeing as we do -- just like I’ve gotten used to him being smaller and livelier and having chubbier cheeks. And sometimes I forget that other children don’t necessarily share all of these traits.

The normalization of abnormality is part of a process of psychological adaptation.

Indeed, something like this must be going on for Asa himself.

If the scales were to fall away from his eyes tomorrow, he’d probably be very disoriented. The world would look strange and dazzling.

Like the people in Plato’scave, he’d probably prefer to keep the shades on.

For now, leaving the cave isn’t an option anyway.

What we’re trying to do instead is make little steps towards the light.


How are we going about that?

The latest thing we’re trying is bifocals.

Aren't those for old people? you may ask.

Usually, yes. But then again, so are cataracts.

In Asa's case, a cataract (a side-effect either of his cancer or the chemotherapy he’s received) effectively blinded him in his left eye until it was operated on in September.

In the cataract operation, the surgeon removed the natural lens of the left eye, which had become opaque.

This all seems to have worked out pretty well. But as a consequence he's left -- at least for the time being -- with quite poor vision in this lens-less left eye.

For the past few months, we've been patching his good eye periodically, to give the left eye practice -- or more precisely, to give his brain practice at dealing with input from it.

And to help the brain along, we’ve been fitting him out with spectacles with a very strong lens on the left side, to compensate for the short-sightedness.

The new bifocals will provide some close-up magnification as well, which may help him with some of his hobbies: writing, painting, and, um, watching The Tellytubbies on his mum’s phone.

Perhaps we should get him a pipe and tweed jacket to go with those bifocals.

He'll reach the ripe old age of three this week.


Post a Comment

Popular posts from this blog


Maybe it's all the to-and-fro'ing we've done on the trains between London and Birmingham for his eye exams, or maybe it's due to some kind of innate fascination with large moving things, but Asa loves trains.

I post these drawings of his partly to cheer myself up. It's been a pretty rough week, watching the US elect a con man as President.

Asa is an American citizen, and in 13 years time he'll be eligible to vote. I'm grateful that he's healthy, and that he stands an excellent chance of living a full life. But I worry about the world that he and his generation will inherit.

Let us pray for wisdom in our leaders, and for strength and resolve for those who resist them in the cause of the greater good.

Mixed results

Last Wednesday Asa was put to sleep and underwent an eye exam under anaesthetic. 
The first since the beginning of the new chemo, the exam showed that the drugs have had a "partial effect."

In Asa's left eye, the tumours responded well to the chemo. 
But in the right eye, there's been a slight increase in tumour activity.
And in the left eye there's a cataract developing.
A mixed bag
This was not what we'd hoped to hear.
We had reason to expect that the TVD (topotecan-vincristine-doxorubicin) combination would lead to shrinkage of the tumours in both eyes. 
And the appearance of a cataract -- a clouding of the lens -- at this stage is unusual: puzzling to the doctors as well as us.
While cataracts can be removed through surgery, cutting into the eye when there are active tumours inside is not advisable. So treatment for the cataract itself will have to wait until the tumours are stable.
The main risk in the near future is that the cataract may make it difficult to moni…

Hard questions

One morning recently, when we were trying to get Asa to put on his socks, he asked us, seemingly out of nowhere: “What does it have in it, my right eye?” It was clear he wasn’t in discomfort; it wasn’t that he had a piece of grit in there. He pointed up at his eye with his index finger.
“Well, it’s got jelly in it,” I said. “And a retina, and a lens. And lots of other things we didn’t know about two years ago.” “And what does it have in it, my left eye? Does it have a lens?” “No, your left eye doesn’t have a lens.” “What happened to it, the lens?” “The doctor took it out, because the eye was poorly.” “Was the lens poorly?” It had gotten --” “Cloudy,” Selam offered. “Yes, it had gotten all cloudy, and you couldn't see well through it. So he took it out.” “Who took it out?”  “The doctor took it out.” “It doesn’t have any lens.” “No. That’s why you have to wear glasses sometimes, so you can see better. And that’s why Mummy patches your right eye sometimes. Because we want you to see as well as …