“She can hear my singing,” I said assuredly, and I moved on to “Quando Men Vo” from
La Boheme
.
But in the middle I stopped. Bill was in the kitchen and I asked him to come back.
“What about her sight, Bill? Do you think she can see?”
“I am not sure,” he said, his eyes not meeting mine now either.
Surrounded by old people wearing flimsy grey goggles, I sat with Juliet at the ophthalmologist’s office and narrated board books.
The Three Bears. Hop on Pop. Time for Bed.
When I came to
Brown Bear Brown Bear, What Do You See?
hastily stuffed into the diaper bag, I cast it aside and then thrust all the books back into the bag. It was doubtful that Juliet could hear anything I was saying to her, and with tears flooding my eyes and occluding my own vision, I was panicked that she couldn’t see. I sat impatiently, holding Juliet face-out as was usual now, and racked my brain for the information I once knew about Usher’s Disease, the syndrome in which deafness is linked with blindness.
The waiting was interminable. The room smelled like formaldehyde mixed with ammonia. We were taken in for dilating drops, then sent back into the crowded waiting room.
Highlights. Your Big Backyard
. I couldn’t just sit there without showing her anything. When we were finally taken in to meet with the doctor, Juliet was squirmy from having
sat so long. Quickly, the doctor shined a light into the backs of her eyes to examine her pupils. Just as he lowered the light, Juliet looked into my eyes for the first time. She looked into my eyes! I grabbed Juliet close in the darkness, and between heaving breaths, I planted soft kisses all over her face—her cheeks, her lips, her nose, and her eyes—her sparkling, light-filled, blueberry eyes.
Just weeks after Juliet’s arrival, I was preparing to teach again at Mount Holyoke College. Thankfully, I was slated to teach just one class: Introduction to Philosophy.
I knew better than to lead off with Bishop Berkeley. But there I was, standing at the blackboard, launching into idealism. I could see from the telltale signs of shifting and fidgeting that my students’ minds were beginning to wander. Just a few more words about Berkeley’s main tenet—to be is to be perceived—and my mind wandered, too.
I couldn’t shake a dream I had had the previous night. A lone girl was standing at the edge of a large field. Wild gusts of freezing air swept through the landscape and the ground froze in an instant. The girl fell upon the cold earth, blades of brittle grass snapping beneath her. She cupped her frost-bitten hands to her ears, as the lullabies that
welled inside her memory went silent. Just when she began to shriek, I woke in a clammy sweat. Juliet was crying.
As I stood before my class, I watched the chalk dust drift soundlessly onto the sill and I wondered: Did anyone ever perceive my mother? Did anyone perceive Nellie or Bayla? Did Pearl?
Just days ago, I had received an e-mail message from my cousin Valerie. She still hadn’t been able to locate Bayla or Pearl in any available US Census Reports. Maybe they never got to the US, or maybe they changed their names at the gateway. That same day I received a CD Valerie prepared for me, with a picture of Pearl burned onto it. I viewed Pearl on my computer screen. Strength emanated from the sharp curve of her brow, the jut of her chin. Her dark irises settled in on me, bobbing in large pools of white. Eyes, I imagined, that wouldn’t hastily turn away
.
Still at the blackboard, goose-fleshed now with white powder dusting my arms and flecking my black pants, I feared for Sophia and Juliet. For me. How could
I
reflect back their existence, their meaning? I, who was more transparent than chalk dust, a child who grew up on the edge of a home before eyes that turned inevitably inward, unable to mark me in a spot for real.
Massachusetts, October 2003
THE DAY JULIET TURNED SIX WEEKS OLD, we headed to the audiology clinic at Boston Children’s Hospital. Sophia would spend the morning playing with her friend Ben. I climbed into the back of the car beside Juliet, with the diaper bag full of bottles, board books, finger puppets and rattles. I would entertain her for the two hours while Bill drove.
I was still always paired with Juliet. Bill was slow to bond with her, and I took it personally. After the tumult of this pregnancy and Juliet’s vision scare, I was wholly identified with her. Why wasn’t he enamored with her, like I was? I felt rejected on Juliet’s behalf.
The few times I spoke to Bill about it, he shrugged it off, saying everything would be fine. Bill had a faith in us, even in our disconnections and absences, that I couldn’t fathom. The slightest shake up and I imagined devastation at our roots. But Bill kept his gaze fixed on our foundations:
we were solid and strong, our love for each other thick and true. His faith didn’t always translate into closeness, though. Steady and sure could be far away, remote.
In the car, I focused my attention on Juliet. I fit a sleek purple butterfly puppet on my finger, then made it flutter around the back seat before landing with a tickle and a kiss upon Juliet’s cheek. Flutter, tickle kiss. Flutter, tickle kiss. Juliet’s squeals and laughter filled my ears until the moment we entered the sound booth to discover the degree of her deafness.
“Profound.” According to the audiologist, Juliet could not hear anything—not a running lawn mower, not a revving jet engine. Most likely, the thousands of tiny hairs, the cilia, that normally line the inner ear and stimulate the auditory nerve, were in Juliet’s case broken, bent, or missing. Hearing aids, even the most powerful ones, wouldn’t enable her to hear spoken language.
Bill and I didn’t speak. I crossed the room to where Juliet lay asleep on the examination table. I picked her up and held her tight to my chest.
The audiologist suggested we schedule another test that would tell us exactly
how
profound Juliet’s hearing loss was. I wondered why we should bother. Did it really matter where, in the range of profound deafness, Juliet’s hearing loss lay? I resisted, on the grounds that another
sedation would leave Juliet either inconsolably cranky or vomiting as she was earlier today. But my resistance was to the news itself. I was used to hearing impairment but not stone deafness.
On the drive home, Juliet slept. After an hour in the car, silent, I looked through the materials the audiologist had handed us: information about cochlear implants, a surgical technology that could possibly give Juliet access to sound; pamphlets on sign language classes; the names of websites, of parents, of schools, both oral and manual. Here we were again, at the center of the Oral/Deaf divide. But this time, with the diagnosis of
profound
deafness, we couldn’t be sure that the oral approach was even an option. Juliet would need an MRI first, to determine if her cochlea was structurally intact for an implant. She couldn’t get that test until she was six months old. The implant surgery itself couldn’t be scheduled before her first birthday—the FDA doesn’t approve of it earlier—and then, who knew whether it would enable her, successfully, to hear and to speak?
If an oral framework turned out to be impossible for Juliet, how would we manage as a family? How were we
to forge bonds with our baby? How would our extended families and our friends ever get to know Juliet?
There wasn’t a large Deaf community in Northampton. Even if
we
gained fluency in Sign, Juliet would be isolated here. We would have to relocate to somewhere with a large Deaf community so that she could make Deaf friends, have Deaf teachers, Deaf role models.
I knew firsthand the challenges of learning Sign. Despite consistent efforts, I still had a limited grasp of its grammar. But I was determined to learn it now, while we figured out our options.
I fished out my cell phone and dialed the number on the “Family Sign Language Program” pamphlet. In a faltering voice, I explained that we had a profoundly deaf baby. We knew some signs, but not sign language, and we needed to learn. They arranged for a teacher to come to our house that weekend.
A woman with short black hair and a narrow, ruddy face arrived at our door on Saturday morning. Her name was Cynthia. She waved hello and walked into the house. Bill carried Sophia down the stairs, still in her pajamas. I cradled Juliet in my arms. We stood awkwardly in the entryway for several minutes.
The person on the phone had said that the Deaf teacher
would be joined by an interpreter. The interpreter was late. Despite the Sign vocabulary I’d amassed, I was practically non-conversant. I motioned to the couch, and we all sat, waiting.
The minutes ticked by. Cynthia smiled at Sophia, motioning for her to come closer. I pantomimed the offer of hot tea, which luckily Cynthia accepted. The relief of heading into the kitchen for the kettle mutated into worry as I walked back into the living room with the mugs. How was I going to communicate with this woman? How was I going to learn from her what I needed, in order to communicate with Juliet?
The interpreter knocked just then, and for the next hour, she translated back and forth as Cynthia set a schedule for the next ten weeks. She explained that there would be no interpreter after this first meeting; we’d have to get along in Sign.
The following Saturday we began again, sitting awkwardly on the living room couch. Cynthia signed and we watched. We imitated her hands, uncertainly. She pointed to our expressionless faces, then she modeled expressive-ness: eyebrows furrowed for questioning, cheeks buoyed for excitement, mouth and eyes scowling for anger, shoulders drooped for disappointment, and so on. It wasn’t just our hands we’d have to train.
Juliet still arched backwards, despite our constant efforts to reposition her. Our audiologist wondered if she was trying to see behind herself. Juliet was doggedly persistent, undeterred, not to be redirected. We gave her a Sign name like a boomerang, formed with the hand shaped into the letter J, swooping out from her heart and landing back where it started. Sophia chose her own Sign name: her hand shaped into the letter S, moving in the arc of a rainbow.
Week after week, I faltered but managed to learn some Sign. Bill sat through the weekly sessions barely moving. He told me his hands were not dexterous. I gave him sign language flashcards and a computer CD. I begged him to practice.
At some point Bill’s hands became cracked and torn, and no amount of lotion, cream, or even prescribed medicine could heal them. It may have been the bottle washing, compounded by the New England dryness. Or it may have been my anger—at the way his hands weren’t signing with Juliet—that had its way with them.
For the next few months, I cornered the deaf people I met, strangers in the street, and I asked for the chance to try to sign with them. In the house, I signed alone, bitter at Bill for not trying harder, fearful that Juliet would not see a whole language if I was the only one using it.
Whatever I had thought about our family being equipped to handle deafness was
all wrong
. At night, I began writing again—I hadn’t been able to write since before the breast surgeries and Juliet’s birth—and now I could see my fear and anger steering my stories. I imagined Nellie and Bayla entirely shut out from family conversations. Moshe’s ponderous utterances reeled out invisibly from his lips, obscured by his beard. When he pounded the table with dramatic flourish, the girls startled and shook. In my imagining, he never learned a single one of their signs. I wouldn’t let him.