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