Pearl looks into the living room. Moshe is sitting with a book. His face is disgruntled and his fingers are wound tight with the white fringes that stick out beneath his shirt. Nellie is standing at the crib, peering through the slatted rails. She is studying her baby sister, asleep with her legs bent like a frog’s, her
arms stretched straight above her head. Pearl goes to Nellie. She points to the baby, and struggles to explain that she cannot hear. Moshe grouses loudly from his reading chair
—
“you don’t know that”
—
but Pearl is certain. She knows the scanning eyes, the searching fingertips, the flattening palms against the floor. She points to Nellie’s ears, then to Bayla’s, and shakes her head “no.”
Moshe rustles himself out of the living room chair and shuts himself off in his study. Pearl counts to herself. Five months since Bayla’s birth, and Moshe still hasn’t come to her in the night. Not that she’s so eager. These nights, she does the extra baking once Nellie and Bayla finally sleep. Her hair, damp from the mikva, she wraps up into a tight knot under her marriage wig. Why should she advertise her monthly cycles, marked out by her trips to the bath house? God knows she is trying to be a good wife, a good mother. So, why? She begs God to tell her, why this curse of daughters who cannot hear?
At the market, in the upstairs galley of the shul, at the river to collect water, Pearl watches other mothers with their children, and she knows it is different for them. They sing to their young ones in breathy whispers, in octave-leaping coos. They invent stories, and the children’s eyes grow wide. A calf in an imaginary flower-drenched meadow takes its first wobbly steps. A silvery fish breaks through a lake’s shimmering surface to speak in magical tongues. A ball of yarn mysteriously
appears in an old peddler’s basket. Stories Nellie and Bayla will never hear.
Pearl falters in fits and starts, in a confused pantomime, trying to understand and meet her little girls’ most immediate needs and desires. Bayla cries and Pearl offers her more to eat, hands her a doll to play with, and then sees
—
oh!
—
her little finger is red and swollen, it must have gotten pinched in the slats of the crib.
Nellie’s hungry eyes devour everything in their sight. Yet, Pearl can see that the patterns of days and weeks do not compose a familiar rhythm for Nellie. Routine events
—
the frenzied buying on market day, the lighting of the braided Havdalah candle
—
come as a surprise, a new enchantment to Nellie week after week after week. Pearl’s fears mingle, then, with the thrill of her girl’s endless, childlike wonder. At least with Bayla’s arrival, Nellie no longer sits alone, hours on end, in the nook beneath her bedroom windowsill. She rushes about the house and cares for Bayla. She helps Pearl bathe her. She strokes her fuzzy scalp. She fusses over her clothes. Pearl watches from the kitchen as Nellie gently rocks Bayla in her crib, its wooden rails suspended from strong ropes that run from the ceiling. Nellie gestures and points, makes faces and whole body movements. Her face is alight, like a well-lit house on a dark night.
Massachusetts, May 2001
SOPHIA WAS TEN MONTHS OLD when we arrived in Northampton. Light flooded into our house through the huge, wavy glass windowpanes. Bill and I arranged for modest home renovations: we had the busy wallpaper removed and each room painted in a deep, historic color.
In the spirit of my superstitious forebears, I hung a
chamsa
, a “protecting hand,” from the iron doorknob in our front entryway. Sophia ran her little fingers over the glistening hand, molded in shiny copper and bejeweled in brilliant turquoise, the “eye” in the center meant to ward off evil. Despite our modernity, the strategy of averting trouble through an ancient stare down still held its appeal.
Jan came to our house from the Clarke School the first week, and every week from then on. She brought huge tote bags filled with toys and visual props to accompany songs to sing and books to read: itsy bitsy spiders and water-spouts, five little monkeys and doctors and beds, a plastic
Humpty Dumpty egg, a stuffed toy rat and a sack of malt, and the house that Jack built.
Together with Jan, we sat on the floor of our living room and engaged in “auditory-play therapy” with Sophia. We set up a toy car on a track, and as it ran we said “go!” We tucked a doll into a miniature bed, then nudged it and called out, “ Wake up, baby!”
Jan taught us to narrate everything we were doing, and to take extra care to prepare Sophia for what was happening with both visual and auditory cues. Before a car ride we were to bring our keys to Sophia, show them to her, and jangle them near her ear. Before a bath, we were to carry Sophia to the tub, show her the running water, and let her hear it. It might be typical for all babies, especially those who nap often, to expect the unexpected, or else to be beset by confusion: they fall asleep, they wake up in the supermarket; they fall back asleep, they wake up in Florida in Grandma’s living room. But deaf children are at risk for confusion even when they are awake because they miss the auditory cues that tell hearing children what will happen next. A dog’s bark + heavy footsteps down the hall + a deep voice trailing in = Daddy’s home. Without the anticipatory sounds, Daddy appears as if from thin air.
Multiple times each day, Sophia pulled out her hearing aids. She’d reach behind her ears, yank the aids off, and
throw them across the room or drop them into her bowl of oatmeal or plunge them into her mouth. Jan was insistent that the aids be returned to Sophia’s ears immediately after the necessary clean up.
We had other concerns by now, too, one that even overshadowed the hearing loss. Sophia’s weight was low—so low that doctors labeled her with the term “failure to thrive.” She had never eaten a lot, and even the move to solid foods hadn’t boosted her weight. At birth she had been in the fiftieth percentile, and now she was below the first. Specialists urged us to consider feeding Sophia with tubes—a nasalgastric tube run down her nose, or a G-tube surgically inserted into her stomach. We resisted such invasive measures, and tried fattening her up the old fashioned way. We put cream into everything we served her, trying to make each bite as calorie-rich as possible. We ate at busy restaurants to keep her distracted as we nudged morsels of muffin, bites of ziti, or spoonfuls of vanilla ice cream into her mouth. We bought every high-calorie food we could think of to entice her to eat. Maple butter, tapioca pudding, strawberry cheesecake. Once I prevailed upon a baker to sell me a container full of cannoli filling. Most of our “hearing lessons” had baking and eating components. All of us
but
Sophia grew fatter—Bill and I ate cheesecake in middle-of-the-night fits of stress,
and Lucca gobbled up every last bit that fell uneaten from Sophia’s high chair.
Early on, Jan recommended that we create picture books for Sophia: “where” books and “who” books to provide Sophia with visual narratives of our days. For a week, I kept a camera in the car and snapped pictures to document our routines. The following Saturday, I sat at our kitchen table, spooning strained peaches (and cream) into Sophia’s mouth and squash soup into mine. An orange meal for both of us. Then I set out the developed pictures, back from the camera shop, and began to organize them before placing them in transparent pouches.
Sophia at the pediatrician’s office; Sophia in the audiology booth; Sophia in a lesson with Jan.
As I considered what order to put them in, I was overcome by a sudden revulsion, a desire to throw them all out. Where was
Sophia at the playground, Sophia at the children’s library, Sophia at a friend’s house?
The only pictures unrelated to Sophia’s therapies were pictures of the restaurants and supermarkets we frequented. I flashed with anger, first at our circumstances, then at myself. Why had I let Sophia’s young life become narrowed in this way? Why hadn’t I rounded out her therapy schedule and medical appointments with diversions, playdates, fun outings?
The next morning I took pictures of the public library, a nearby park, and a playground. Over the next few days,
we photographed children Sophia was becoming friendly with. Ben, with a big smile on his face and a flower-puppet in his hand. Katie, with a colorful dress-up scarf billowing like a wizard’s cape around her shoulders. Julia, gnawing on a gigantic ear of corn. Bill took a picture of Sophia and me whooshing down a slide. We dug out photographs of our extended family and family friends. I put them all in Sophia’s albums, vowing to plan (and to narrate) richer, fuller days with Sophia.
From Northampton, we were two hours away from my parents in Connecticut. Every three or four weeks, we would drive down to see them or they would come up to spend the afternoon with us. My mother devised fattening recipes for me to try on Sophia, using ricotta cheese and mascarpone. My father collected newspaper clippings, sometimes about deafness or low weight, sometimes about a philosopher or a psychologist whose work I might find interesting. I was glad to be nearer to my parents—I wanted a steady connection with them as much as ever.
When Bill traveled for work, I would stay over at my parents’ with Sophia. Early on, I would watch apprehensively as my parents interacted with Sophia, fearful that
Sophia’s wide open gaze would go unmet as my parents’ attentions turned to other things—dressing, reading a day’s newspaper, preparing a too-extravagant meal. I would stand by, ready to catch Sophia’s felled gaze in mine. To my relief, my parents played with Sophia attentively. Both my father and my mother doted on her, but my mother communed with Sophia. Calm and focused, she gave Sophia her full attention—attention I had experienced,
cherished
, only in fleeting, intermittent intervals as a child.
With Sophia in her lap, my mother compared their hearing aids. She favored Sophia’s soft, rubbery, colorful earmolds to her own hard, plastic, white ones. Once she noticed a red patch where Sophia’s hearing aid had rubbed a raw spot behind her ear. Hurriedly, my mother brought out the baby oil and gently soothed Sophia’s skin there. I watched them bond, eyes locked. Deafness shared. My mother combed Sophia’s hair, tickled her cheeks. She made a high-calorie rice pudding, and Sophia ate it all up.
As we went about our daily lives in Northampton, we didn’t meet many deaf people. Our hearing lessons with Jan took place in our house, to support our listening practices at home. Bill and I made contact with some Clarke School
parents, but there were no other deaf babies at Clarke then with whom to form a playgroup for Sophia. Most often, the hearing-impaired people we met were octogenarians rattling shopping carts slowly down the aisles of the supermarket. Sophia always noticed and pointed to their hearing aids, even the small beige ones that fit snugly inside their ears.
On occasion, I would see people Signing. And though we had opted for hearing aids and an oral approach for Sophia, I would find myself crossing streets, nearly jumping buses, in order to get a chance to introduce Sophia and to explain, in my halting sign language, that Sophia was hearing impaired, too. They would fawn over her, signing out her sweetness and beauty. Then they would face her directly and sign to her and she would stare back at them, absorbing their open expressions.
One day I saw two women, deaf and blind, signing into each other’s hands. My thoughts ran me, then, to the setting sun on the Sabbath, no lanterns lit along the shtetl streets. The dusky shadows would have ended the possibility of further conversation for Nellie and Bayla—unless they took up each other’s hands, as the deaf-blind do, and signed into each other’s palms. I longed, then, to share in the hand language of the Deaf—Nellie and Bayla’s home Sign, their only buffer from utter isolation. And I vowed
to arm Sophia with everything the modern world would allow to make
her
less isolated, less vulnerable. A TTY system, if she couldn’t talk on the phone. A vibrating alarm clock. A light-up smoke detector.
Surprisingly, the Deaf people we met didn’t often challenge our decision to try hearing aids. It was the hearing people who subjected me to their questions, opinions, exclamations, and doubts. They stopped me on the street, in the pharmacy, at the coffee shop. “ Why does your baby have hearing aids?” “Will she get better?” “Are you sure she needs those?” “ What’s wrong with her?”