Her Bittersweet Burden

My daughter Arden has worn an eye patch for the past four years – more than half her life. For between two and four hours a day – and sometimes as many as eight – she’s covered her strong eye to give the weak eye a workout. We were cautioned early on not to call it her “bad” eye. It’s not bad. It’s just weak, and the hope is, that through patching, the weak eye will gain enough muscle strength to track the way it’s supposed to.

It seems easy enough. But that’s a lot to ask a preschooler. And now she’s a second grader. And still patching. And it is easy now. She knows the routine. She reminds me when I forget. She knows – and I mean knows – how much she’s gained by wearing her patch.

Four and a half years ago, Arden’s preschool teacher – who was also trained as a nurse – pulled me aside and told me that my daughter had serious issues with her vision. I think her exact words were, “She has no vision in her left eye.” She urged me to get her to a pediatric eye doctor right away.

I’ve always pictured myself as a (mostly) rational parent. I think I know my kids pretty well. I think that I am a pretty good judge of what they are capable of and what their limitations are. And, being a teacher, I figured I had a pretty good edge on believing what other teachers might have to say about my own kids.

And yet, even as this woman was talking to me, a little voice inside my head was saying, “Yeah, right! Not my kid!” I just couldn’t believe that my offspring might have an imperfection.

It wasn’t until a few weeks later, when another, more lucid voice in my head, one which had been nagging, finally broke through the incoherence: “Maybe Miss Renée is right. Maybe Arden can’t see.” And so I plopped my daughter onto my lap with a stack of CD cases nearby. I told her we were going to play a little game and I wanted to know what she could see on the CD cases when I covered up each of her eyes. I covered her left eye, and she played along. I covered her right eye, and held – I can still remember this vividly – my French Café CD. She pushed my hand away with her own chubby, dimpled-knuckled hand.

“Mom, I can’t see when you do that!”

Of course, the shock, dismay, and panic that ensued are all tragically commonplace. We took her to a local eye doctor who confirmed the nurse’s findings, explaining that her brain couldn’t reconcile the conflicting images it was getting from one eye so strong and the other so weak, so it essentially shut off the weak eye. He took very cool photographs of Arden’s optic nerve in her weak eye, which is covered in what he called “grey matter.” He couldn’t say if that was a cause of her loss of vision, but her eye was slightly “lazy” too, and he referred us to a pediatric specialist who prescribed the patch.

Oh, those first days and weeks with the patch. They were difficult. Because with the patch on, she could not see. At all. And it was so very scary for her. And how do you explain to a four-year-old that something so scary is actually going to be good for her?

But we all marched forward; sometimes all of us wearing a patch while she wore hers, a show of solidarity although I wasn’t sure if she could even see what we were doing for her, with her. We bought her cool patches, decorated with ladybugs or pink camouflage. We found patch posters of fish and princesses that were designed to display her used patches – a gold star chart for the visually impaired.

Once, on the way to school, she heard the word “burden” in a song. She asked Dan what the word meant, and upon his explanation, she said, “Oh. My patch is a burden.”

At first, she couldn’t see the Christmas lights I eagerly tried to point out to her on the way home from gymnastics. And then there were little glimmers of improvement and success, like the day in the car when she told Madeleine and me that the traffic light, fifty or so yards ahead, was red. Hearing stories from adults (so many!) who saw her patch and had to tell her that they had worn a patch as a child and could now legally drive without glasses. And every three months, a visit to the doctor, who confirmed that yes, she was improving. And who urged us to keep patching, double the hours, it’s working!

There were stories, too, of children who weren’t as lucky. Who were facing surgery as their best option. Who refused to wear the patch, or peeled it off when their parents weren’t looking. And also, stares from curious kids, the looks of concern and pity from adults, and questions like, “What’s wrong with your eye?”

To which my brave girl would reply, “I’m a pirate.”

(Disclaimer: I relish in the bewilderment that would pass across the faces of these well-meaning, but sometimes nosy adults.)

All the while she was improving, sometimes incrementally, sometimes in leaps and bounds. But the weak eye still lags far behind the good, even with her glasses on. And even though I know I’m not supposed to, I really, really want to help her with her eye chart while she sits in that too-big chair at the doctor’s office.

Her last few appointments, however, she’s shown no improvement. And we knew this was coming. The doctor had told us that the effectiveness of the patch would begin to wane somewhere around age seven. And so at her appointment earlier this month, we were told that we could begin a “slow wean” from the patch, backing off to three hours daily. At her next appointment, we’ll see if she’s maintained her gains in vision, and I imagine, back off a little more.

I welcome the end of patching, I really do. But I do so with a sense of wistfulness that surprises me. I want her to be free of that burden. She has gained vision through her own diligence and sacrifice. And that’s a huge gift to herself. But at the same time, the end of the patch means the end of improvement. Her vision won’t get any better once she is permitted to stop. And that will be a bittersweet celebration.