The Discovery
Not quite since birth, but pretty close to it, Joey squinted. She seems pretty normal here, in September 2008, at 4 months old:
By 7 months, we have a lot more pictures that look like this:
It seemed not at all unusual for a child to squint in the sun. She was known as "Pirate Joey." Everyone seemed to agree that it was cute and quirky, and not one person ever suggested that it might be an indication that something was wrong.
Apparently, squinting is an indication that something is wrong. It is common among people with cataracts, and while cataracts are typically a condition brought on by age and use, children do develop them congenitally. (There is an entire public health campaign in the UK targeted specifically at childhood squinting. Not so here.) I will forever wonder how we made it two years without a single person suggesting a problem, or ourselves wondering about it enough to mention it to her doctor.
Two and a half years passed. I started to notice her eye drift a little when she was tired. Working in her preschool classroom at the end of the school year, I observed her watching her teacher, and noticed that she seemed to look in the direction of her teacher, but not really at her. Bad vision runs in the family, so it would have been no shock to find out that she needed glasses.
This photo is of Joey and Colin, around her 3rd birthday, in May 2011, just weeks before the discovery. Even here, I think few people would notice the squint if not pointed out. (One could argue that Colin is squinting equally with the other eye.) I guess I can take some comfort that it wasn't so obvious, even right before we learned what was happening.Luckily, Joey's three-year-old routine doctor's appointment was coming up, and it is at this appointment that they typically do the first eye test. (I presume that, at three, kids can finally follow instructions well enough that their answers to "What do you see on the chart?" can be trusted.) Right eye, all is well. She sees a star, a boat....Left eye, and I get a look from her like we just changed languages. Eye chart? What eye chart? her expression asks. Off to the specialist we go.
This alone might have been scary. But oddly enough, we had been to this same eye specialist before, for Colin. (He has a bump on the white of one of his eyes, a nerve, we learned, that just happens to end on the surface of the eye, creating a water blister-like spot. It's not painful, and is completely harmless. He's likely to have it for life.) So we had been there before with not much to worry about. The chit-chat was cordial and calm, some talk of glasses running in the family. Then the ophthalmologist dilated her eye. Suddenly, the conversation changed. She has posterior lenticonus: in simple terms, a cataract, like what older people get as their eyes age or if they have had repeated damage through years of use. Her vision is completely blocked. How long? Hard to say. Not since birth, but probably starting shortly after, some time in the first year. She needs surgery? When? As soon as possible. Within five minutes, I'm in a cramped little office, stacked with papers, talking with an assistant about surgery dates and discussing how to convince a just three-year-old that she can't have breakfast the morning before the surgery.
The Surgery
What else can be said? It was horrible. Worse than horrible. If given the choice, I'll never watch one of my children be put under general anesthesia again. They try to warn you....Anyway, half way through the surgery, they had to call me out of the lounge area....I cried all the way up the elevator, in a panic, having no idea what was wrong. A woman, concerned about the health of her child, who stood beside her, pressed me on my sniffling....Was I sick? Did I have allergies? If not, then what was the matter with me, and could I give it to her child? No, my daughter is in surgery, having her left eye's lens removed, a plastic implant inserted if all goes well, and maybe, maybe getting the chance to see normally. Thanks for asking, though.
About six weeks later, at the end of July, 2011, we find ourselves here:
Looking at this picture just makes me cry.
Next Up: The Pirate Years, Part II: Floating Eyes and Fashion Patches
