“Red. Red. Red.”
I say everything to Joy in threes these days. Then I stare at her lips. They are full and pink and — still. I place the red marker into her art box.
“Up. Up. Up.”
I speak in triplicate again while I continue to stare at my three-year-old’s cupid’s bow. I wait for the slightest flicker of movement, proof of a connection between the motor center in her brain and her mouth.
“Yes. Yes. Yes.”
Her silence stings my ears.
All the unanswered questions nip at my heart. Why can’t she sit or stand? Why can’t she walk or be nourished without her feeding tube? What can she see? The doctors talk a lot but have no answers, and so I no longer even hear them.
Seven months ago, my daughter’s unexplainable medical condition also stole her words. Her language development had always been abnormal, though she usually had a handful: “up,” “mama,” “dada,” “good girl.” Then, those words would disappear (as if never there at all) and new ones would emerge. My husband and I lived with these cycles long enough for them to feel normal. I miss that time. Those few words were proof that she understood us. That she had something to say. They functioned as glimpses into the real Joy, beyond the body riddled with ailments. They were our connection.
Then, we noticed we hadn’t heard any new words in a while. A few weeks later, we realized we weren’t hearing any words at all. Finally, all of her vocalizations were gone. I remember sitting at the dining room table with Joy’s speech therapist. Joy was seated in her activity chair at the head of the table. When her therapist asked her to repeat “la-la-la,” Joy’s jaw moved, but no sounds came out. Her therapist checked her old notes at the end of that session and we saw that the silence had been slowly seeping in for months. Since then, I have been trying to find her words. I repeat her favorites every day — three times each. Sometimes Joy can say “ahh.” It sounds beautiful.
Now, she squirms in my lap. She arches her back to protest the futility of my exercise. I readjust her legs the way her occupational therapist showed me, with her ankles, knees, and hips all at 90-degree angles and her feet planted firmly on the floor. My body is her chair.
“Baah . . . Bah . . . Baah.”
I try a sing-song approach. She smiles, exposing an uneven row of baby teeth.
“Can you say baah-bah-baah?”
Joy kicks her feet out in front of her and thrusts her hips forward until she slides down my lap onto the floor. Her back rests against the tan, shag carpet. I brush a dark curl from her eyes.
When my husband and I sit up in bed, our backs resting against oversized pillows, Joy often lies between us. She tells us she wants to sit up with a low whine — a sound I hear so frequently now that it registers in my brain as white noise. As we look down at our daughter, I remember all of the excuses we made over the last few months while she was losing her words. “Maybe she’s having a bad day,” Eric once said. “I think she is focusing on other areas of development. She almost sat on her own this afternoon,” I told him a few weeks later. “She’s not talking because she is sick,” we agreed when she had an ear infection. But our rationalizing soon faded. There are no more excuses to hide behind. There are no more words.
Eric sighs and reaches over to pick Joy up. We study each other and fall into the silent conversation we have daily. I shake my head and think, How are we going to handle this?
Eric shrugs. His silence says, We will just care for Joy as best as we can.
I turn away. My lips tighten. Eric repositions Joy in his lap and reaches across the bed. He places his hand on mine. A silent plea floats between us.
I, too, am familiar with silent acts. My fingers are frequently poised above the keyboard, ready to pounce at my brain’s command. I fumble for the right words. I type and delete. Start and stop. I talk to no one when I’m at this, and the silence is a gift. But not always. My fingers move in fits and bursts until I rest my wrists on my desk in defeat. I lay my head back on my chair and look up at the ceiling as if in prayer. My fingers still. Then, the silence mocks me and snuffs out my voice.
I often fear the silence will cloak my daughter completely and she will disappear. I work hard to strip it from her. I pile Joy’s body into my lap.
“Dada. Dada. Dada.”
She looks away.
The quiet fills with memories of her voice. It was sweet, yet firm; a child who knows what she wants. That was before the silence crept in between us, a force holding us apart.
Joy pulls her Elmo doll onto her lap. She tugs and twists his furry red paws until she hits the button. “Elmo loves you.” The doll speaks! I toss Elmo aside.
“Mama. Can you say mama?”
Joy shakes her head; slow, small movements from side to side.
“That’s okay,” I say. Guilt spreads through my body like a cancer. I pull her to me, feel her warmth against my breastbone. “You don’t have to say it.”
I kiss the smooth skin on her forehead. “Kiss.” From habit, the word tumbles out of my mouth. Once.
Mwah. Joy’s lips pucker and push forward against the air.
“Thank you for the kiss, Joy.” I smell the sweet scent of her baby shampoo and murmur into her ear, “Mama loves your kisses.”
I think about silence and go in search of its meaning, its significance. I want to understand not only what it takes away, but what it gives, and how.
Silent personas have stretched across a canvas of melodies — the famous late mime Marcel Marceau was one of the world’s most treasured artists. Hoards of people collected in movie theaters, huddled around television sets and packed theaters to feel his genius. His art was magnetic. His silence illuminating.
Performance halls rumbled with laughter when Marceau appeared. Sobs also echoed through the theaters. He was always silent, but music was often his backdrop. “Music and silence combine strongly because music is done with silence, and silence is full of music,” he once explained.
Through his work, L’art du silence, Marcel Marceau bestowed a loud and brilliant gift upon the masses.
I consider how silence and music and movement intersect in Joy’s world. At Music Together class, the Flutes CD, track 8, always makes my daughter cry. Ever since Joy heard the slow, haunting rhythm at 12 months old, this song has moved her to tears. Music is a way in for Joy, seeming to pierce through her pain, rocking her body with glee. James Taylor soothed her after many surgeries when she was an infant. The tune of “Itsy Bitsy Spider” still sends her into hysterics. Like a golden retriever who never leaves your side, music is Joy’s steady companion.
“It’s called closing the circle,” Joy’s music therapist explains, pecking out a snappy rhythm on the piano, pausing at the last note. She urges Joy to complete the phrase by tapping the keys in front of her. “It creates a musical back and forth; like a conversation.” Joy rests her head on the back of her chair and smiles. Her hands are still in her lap.
“That’s okay, Joy,” her therapist says and plays another incomplete melody. “Can you hit the keys?” I shift in my chair, which was built for a three year old, and look out the window at the children running and shouting on the playground.
The therapist begins to hum along with her playing. Bah — Dah — pause. Bah — Dah — pause. Joy’s silent beat creates a sound of its own. This unexpected waltz coaxes my attention back into the classroom.
Plunk. Joy drops her hand down on the piano. “Excellent, Joy!” Her therapist and I share a quick glance. Will Joy one day talk, I wonder, through music? Through the silence between the notes?
One day, at a friend’s barbecue, Joy sleeps in her stroller next to me while I watch three teenagers sit shoulder to shoulder on a bench in the backyard. A fire pit crackles and pops in front of them, and around us, conversations click, a dog barks. I see only the teens’ backs and the faces of their phones, aglow and buzzing. The teens hold their phones close to their eyes, elbows sealed to their waists, backs slightly rounded. Their thumbs dance frantically over keypads.
They pause briefly — as if taking a breath in a monologue — before continuing. The boy laughs. The girl to his right stops texting and peers over at his screen. They look at each other and smile. She swings her leg, narrowly missing a soda can.
His phone nags at him with a low hum. They return to their silent conversations.
I contemplate the voiceless dialogues playing out before me and glance over at Joy. I struggle to quiet the noisy chatter about soundless communication that is banging around in my head.
At home, I lay Joy down on her blanket and turn on Elmo Radio and our silence shatters.
I lie next to her and blow a quick breath against her neck. She raises her hands to my face and laughs, a deep belly laugh that rocks her whole body.
“More?” I ask. She grins and raises her chin to expose her neck. I blow again and she squeals in delight.
I scoop her up into my arms and dance around the room. She wraps her small hands around my arms and pulls me tight to her. Our bodies surrender into each other. She nuzzles her head into my chest, her breath, a quiet steady rhythm, resonating against my heart. Hush. Hush. Hush.