Will My Visually Impaired Daughter Ever Read? (And Why Does That Question Scare Me So Much?)

I've learned not to worry about whether others approve of my life. But applying the same thinking to my daughter is a challenge.
Learning to Read. Photo by The Real Estreya/ Flickr.

Learning to read. Photo by The Real Estreya / Flickr.

Ula was setting out knives and forks for lunch when I took the phone call from the graduate student. Time zone differences had required that we schedule this midday hour to speak, thus I had no choice but to drain the juices off the meatloaf and make gravy while we were on the phone. She was telling me about her research, exploring whether or not I would be willing to serve on her dissertation committee, where she would be investigating the spiritual aspects of parent-child relationships.

I loved her idea. I told her I would do it. She began explaining the list of expectations. I’d have to be wiling to read and critique her proposal. No problem. I’d have to be available to discuss the progress of her work with her. No problem. I’d have to review a few drafts of the dissertation. No problem. I’d have to be available for two telephone conferences, where she would defend her research proposal and the final dissertation. No problem. I’d have to submit a CV for her school to review.

I remember staring at faculty CVs in graduate school—long lists of publications, committees, jobs. I came to see it as a scorecard.

“No.” I said flatly as I pried open a jar of pickled beets and slapped them on the table. “I won’t do it.”

There was an awkward silence on the other end of the phone. I offered a simple explanation. “I don’t have one.”

In fairness, it wasn’t a bizarre request. I’m sure the administrators of her education simply wanted to verify that I wasn’t a used car salesman signing off on a Ph.D. candidate’s work. But I remember staring at faculty CVs in graduate school—long lists of publications, committees, jobs.

I came to see it as a scorecard. Every little achievement was supposed to be listed off on this document that could be handed to anyone at any time. If the CV was long enough, a person may be judged favorably professionally. And here, at 40 years old, standing in my kitchen after years of parenting, farming and writing, a CV was the last document I was willing to sit down and compose. I know what I am about. I know how I choose to spend my time. I know what I want to do with my life. And the idea of submitting a CV for someone else to judge my accomplishments and credentials simply rubbed me the wrong way.

To her credit, the student didn’t let my obstinance dissuade her. “How about just a list of your publications?”

I laughed. Bob used to try to convince me to keep track of publications. But computers kept crashing, records and documents were perpetually getting lost. I kept forgetting. As a compromise, I eventually found a cardboard box where I’d toss little artifacts from my writing career when I thought of it. Things get shoved there in no particular order, if and when I think to do it. Lots of stories get reprinted in other publications after I write them. I don’t keep track of where they go. I can barely keep track of my emails and the last time I showered. The box filled up a few years ago. It sits in a cupboard in my office. Maybe my kids will look at it when I am dead. Maybe they’ll just take it to recycling.

The bottom line is that, at some point in my life, I decided that I had to write. I had to farm with my family. And I knew I wasn’t the best writer. And heavens knows I’m not the best family farmer. But it is a life that feeds my soul, and I leap from my bed early every morning because I am doing what I feel spiritually called to do. And I didn’t need any other person’s judgment or assessment of my credentials to do it.

The student and I worked out a compromise. She did a quick internet search and listed a few titles of things I’d written on a sheet of paper with the worlds Curricula Vitae typed at the top. I provided my name, address and the dates my diplomas were awarded. The subject was closed.

I put all this behind me a few days later when it was time to drive Ula downstate to meet a new doctor. She has amblyopia (also known as “Lazy Eye”), and we’ve been doing home therapy with her since she was two. Her bad eye waffles back and forth from being nearly blind to mildly serviceable. When she isn’t too tired, it at least stays straight and appears normal. But after five years watching her doctor shake his head at our failure to make any significant progress, I decided it was time for a second opinion.

The words, “your daughter isn’t even going to be able to read,” hit me like a fist in my stomach.

Developmental optometrists are busy and few and far between, and after some research and phone calls, a New York City doctor finally agreed to meet me at his weekend home in the Hudson Valley to conduct an assessment.

We met in his garage. Curiosity piqued by the fat folder that we’d sent ahead from Ula’s current doctor along with his reports that “she’s the toughest case he’s ever had,” the doctor plunged in, asking her questions, talking to her about what she sees, and presenting her with a brand new assortment of tests.

After a while, he sent her outside to play with her sister, so that we could speak in private.

“Ula has deep amblyopia,” he proceeded to explain. Her condition is not simply a matter of a muscle turning her eye, but also a poorly functioning eye. “But that’s not where I’m concerned,” he continued. “I’m worried about her good eye. It doesn’t track. And if we can’t get it to track, your daughter isn’t even going to be able to read.” He proceeded to give a list of additional visual impairments, but I couldn’t hear any longer.

His words, “your daughter isn’t even going to be able to read,” hit me like a fist in my stomach. Ula’s a wordy kid. If she hears an unfamiliar word, whether in conversation or a story, she interrupts and demands a definition. She tries to use it correctly. The kid can verbally dispute, debate, build argument and negotiate with language and persuasion skills that bring her father and me to our knees. If she could, she would have stories pumped into her through a drip feed. Her favorite evening activity is to listen to audiobooks while she draws, paints, and colors.

At seven years old, she has begun to learn to read, but her proficiency is probably nowhere near that of her friends. And over the course of the next year or two, she is likely to fall way behind.

I was in a daze as we left the doctor’s house, trying to figure out what this meant for my daughter. And I am dreadfully embarrassed to admit that one of the first places my mind wandered to was, “What will people think of her?” And, since I am her teacher, the next shameful progression in thought was “What will people think of me, if my daughter cannot read?”

How interesting: When it comes to my own life, I have made choices to do what I love, to refuse to keep score, to refuse to maintain a CV, to dismiss judgement. But the first thing that happens when I learn my child is confronted with a visual learning disability, is to ask the very same questions of her that I have refused to answer for myself. Perhaps I have not shed my fears of judgment as cleanly as I would like.

It takes me a few days of wandering around in a haze to conclude that this thinking doesn’t serve my daughter, who continues to call out the letters she recognizes on road signs, asking for help interpreting them. She continues to hide away with books and holler for me to help her decipher words. When her grandparents come for Sunday brunch, she tumbles out to the patio with a pile of volumes, eager to show them how she has progressed. At night, we cuddle up together for her to read to me.

She gets tired quickly, but she does not recognize that she has a disability. She takes pride in the sentences that she works through, then rereads them with creative voices and dramatic flair. We giggle over the pictures.

And as I witness her simultaneous pleasure and determination to master the written word, I learn something.

I write and farm because the drive to do so is deep within me. It doesn’t come from outside opinions. There is not a CV to be written that will make me uniquely qualified for my daily activities.

Likewise, Ula’s spirit has decided that she will read. It may happen more slowly. It may take a lot more work than it does for other kids. We may have to continue our work with doctors. But this is the pining in her soul. My job is to keep the fear of judgment out of the picture. And I am as determined to do that as she is to read.