Published on August 13th, 2020 | by Mimi Iimuro Van Ausdall1
Parenting in Low Light
I decided to launch myself into the world three months before my projected due date. Just at the tail end of the second trimester. Weighing in at one pound and fourteen ounces, this eager featherweight was projected to perish in the fight for life. Indeed, my birth was not greeted with flowers and cards of congratulations but with notes of condolences.
It’s true. I did stop breathing many times a day in my little incubator as I hung out with my dedicated nurses. But, over time, this baby boxer raised her fist in victory. I made it home. “A miracle baby,” the nurses called me. “Preemie Mimi,” my parents cooed.
But, a side effect that I still carry with me is low vision. Technically, I have retinopathy of prematurity. This means that the blood vessels in my eyes are wonky—misplaced roads that don’t reach the right destination. Extra roads too.
Yet, even after multiple procedures and surgeries from correcting a lazy eye to lasering my retinas to reattaching them when they had loosened four or five times to replacing two lenses to adding a scleral buckle for securing my oblong eyes, I did not identify as visually impaired. I just thought of my eyes as different.
The severity of my impairment became clear to me much later.
My newborn twins were home for the first time. My wife and I drove them from the hospital in the gentlest snow to our home ready with two cribs and a mountain of diapers. We lay each baby in his or her crib to rest in their dark, thoroughly curtained nursery as we likely attended to unpacking the breast pump and sanitizing bottles. I’m not 100% certain, as I hadn’t slept more than four hours in three days. What I do remember is going into the nursery to tend to a fussy baby and exiting in a heap of sobs. “I can’t do this. I can’t even see enough to take care of them.” I couldn’t see the babies’ faces, their expressions, and couldn’t even necessarily tell which end was the head and which the toes without awkwardly reaching out toward a baby–sometimes hitting flannel sheet, sometimes nicking a cheek, sometimes finding the adorable roundness of baby rump. It might sound sweet, this blind reaching, but to me it felt that I was being smacked in the face with my disability: I was blind. I am blind.
My spouse and I had prepared for so many new parent scenarios—NICU, surgeries, and sleeplessness. Surely, we discussed my low vision before the twins were born. I remember we talked about my wife needing to take on more of the driving because I didn’t feel comfortable driving the newborns since I primarily see out of one eye and have no peripheral vision. I don’t even remember the details of any further discussion because other than driving, my vision was the least of my worries when I thought of bringing home two babies. That is how unaware of the extent of my blindness I was, how little aware of the daily modifications I had already made to function and would have to make to parent.
Many have asked me why I use the term “blind” and “low vision” synonymously rather than just “low vision” to describe my sight. After all, I have a drivers’ license. It is true; I am not at this moment legally blind, though I was at one time. When I use the term “blind,” I am following Kenneth Jernigan, former president of the National Federation of the Blind who believes that focusing on blindness as a spectrum does more to unite and to promote the needs of the blind community than dissecting who sees less than whom. To him, functionality rather than precise measurements of visual acuity is more useful. He explains, “One is blind to the extent that the individual must devise alternative techniques to do efficiently those things which [they] would do if [they] had ‘normal’ vision” (my scare quotes; Jernigan “Definition”).
While I perhaps am not profoundly blind, I cannot see my short twins unless my face is pointed fully toward them. I can’t see below my own eye level unless I tilt my head down. Thus, I often can’t see both twins at the same time, especially over time as they became active crawlers and walkers. In the toddler stages, I found that while most people tripped on their kids’ toys; I, from time to clumsy time, tripped on my own kids. I took to sitting in the corner of any given room because this vantage-point usually allowed me to visually perceive both kids at one time. This is a practice I still use.
One of the toughest adjustments I’ve made relates to reading to my kids. Within the first weeks of the twins’ lives, I sat down to read Margaret Wise Brown and Clement Hurd’s canonical Goodnight Moon to my littles at bedtime. The black letters contrasted the white page: “In the great green room/ There was a telephone/ And a red balloon/ And a picture of/ The cow jumping over the moon/ And there were three little bears sitting on chairs.” So far, so good, just a little squinting and moving my head close to the paperboard pages. I read on slowly, as if I didn’t comprehend how letters string together to make words that make meaning. I turn the page. Uh-oh, a midnight blue page with maybe orangish print. I can’t discern the words. I can’t read. Tears stream down my face. I had so looked forward to reading to my kids. I feel so strongly about books that I earned a doctorate in English. And now, I couldn’t read to my own children.
I tried some strategies for adapting. I wore a headlamp, but then the light shown in the babies’ eyes. I began to memorize several stories like Lesléa Newman and Carol Thompson’s Mommy, Mama, and Me. “Mommy picks me up, up, up. Mama pours juice in my cup.” I turn the page on cue. My partner and I both memorized the book and now recite it without the book in front of us–the twins’ last bedtime book before they get tucked in. I also simply made up the story in other books based on the parts of the images I could see. “This furry animal, who appears to be a mammal, seems to be going to the coffee shop before work,” I surmise. The animal could have been a dog or a bear or a cat–I couldn’t be sure. The coffee shop could just as easily have been a French bakery or Ethiopian restaurant for all I could see. This narrative strategy worked well until the kids reached two and half and could talk and sometimes correct me if I didn’t speak a well-known story exactly as they knew it was written. “No, Mommy, it’s Jack, not John on the sled,” they might say, drawing out the “a” in “Jack.”
Recently, I opened a new library book to share with my twins who just turned three. I started but simply couldn’t see the words. I said, “Sweethearts, did you know that Mommy’s eyes are different?” I struggle to explain how I see in a way they might grasp. “It’s kind of… darker when I see.” My little girl didn’t miss a beat. “Oh,” she cocked her head to the side. “Your eyes are darker?” “Yes,” I said staring at her to see if she really comprehended. “It’s okay, Mommy Mimi, my eyes are bright and Mama’s are brighter.” “Yes!” She understands. “Is it hard for you? It’s okay, Mommy. Just do your best.” I read even more slowly than usual and with a cracking voice. The twins leaned toward the book and listened.
Family photos courtesy of the author