My husband’s last name is long and Polish, a jumble of consonants, half of which are inexplicably silent. So when it came time to name our second daughter, I was guided by the same principle as I was for the first: something either vaguely Jewish or definitively Hebrew, short, and able to complement a last name that was none of those things.
We narrowed down our choices to three names and gave our older daughter naming privileges. Cuddled next to me on the hospital bed, she kissed her new baby sister on the forehead and proclaimed her Lila.
Very soon after that moment I wondered if we would have chosen the name Lila, Hebrew for “night,” if we could have foreseen the vision problems she has.
It turns out Lila was born with a spot on her left retina, at various times described as pigmentation, like a freckle, or perhaps some scarring; the doctors waver on that. Whatever it is, it’s not big, but it does affect her sight. Given the opportunity, her brain would much rather use the right eye with its spotless retina. So for five hours a day we put a patch on her good eye, forcing the imperfect one to work and preventing the brain from shutting it off completely.
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The patches she wears are sparkly, covered in ladybugs or puppies. Still, no amount of bling compensates for the discomfort. When Lila was first diagnosed, all of us—my husband, older daughter, and I—tried on a patch. It was uncomfortable and made us dizzy; we all couldn’t wait to rip it off after five minutes, forget five hours.
Now 4 years old, Lila is tall, blonde, and blue-eyed, a playground enthusiast with a quiet soul. But when she’s patched, that’s all people see. Kids tug on their parent’s arms, asking, “What’s wrong with her?” The more imaginative ones ask if she’s a pirate. Uneasy parents give a sympathetic smile and walk away to spare our feelings.
Lila doesn’t seem to realize that the world becomes a lot friendlier when she’s not patched, though that time will come. In the meantime, we review every day why we’re doing this so she can answer inquisitive kids with our mantra, “This is to make my eye strong.”
The patching will continue until she’s about 9, when eye development is complete. There are times I wish we could fast-forward five years. Not always—only on those days when it’s really bugging her, and she’s tearing off the patches as quickly as I am putting them back on. Also, when I don’t feel like explaining to well-meaning strangers that her eye is not lazy; it’s working as hard as it can.
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We don’t know why Lila’s eye is this way, and I’m easily convinced that I either physically or karmically caused this. If it really is a retina freckle, blame my very freckled genetics. There was the time I went sledding in my first trimester. And the silliest of all mommy guilt: I remember in the very early stages of labor, worrying she would be born with a large Gorbachav-like birthmark and feeling relief when she came out looking like a typical blotchy newborn. I imagine that by wishing away one type of difference, I saddled her with another. (Oh, the ways we parents torture ourselves!)
So many other kids struggle with issues that are neither temporary nor part-time, and I only have a small inkling of how that experience shapes a family.
Once, after a glorious day at a children’s museum, a little boy, maybe 8, came right up to us, stuck a finger in Lila’s patched face, and said, “Ha, ha! What’s wrong with you?” Lila, just 2 years old at the time, took it in stride, but her big sister was devastated. When the boy’s mom, who hadn’t been within earshot, came by, I wanted to tell her that her son was an insensitive jerk. Before I had a chance, she bent down to Lila and said, “What a glamorous patch; you’re so cute.”
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So I bit my tongue. My older daughter, who knows I can be a warrior about so many things, didn’t understand: “Why didn’t you tell that boy’s mom what he said?” I tried explaining that the woman’s son had cast a shadow on our day, but there was no reason to ruin hers.
Just recently, we ordered a new set of patches, some with baseballs, others with jets—all handpicked by Lila. The really best ones are decorated with pictures of pirates, wearing patches, of course. If Lila’s vision can’t be 20/20, at least her sense of irony is perfectly intact.
As to her name, I have no regrets; her sister chose well. Our Lila is mysterious and full of tranquil beauty—just like the night.
