By Megan Nix
When I found out that my month-old daughter Anna was deaf, I felt like my feet had floated away. I was sitting down, but the ground was gone. I think, for a moment, sound disappeared for me, too. Between my ears was a speech-ceasing buzzing, a grayness, a feeling that already, my past life was a remnant.
I was in an audiologist’s office in Seattle while my husband was somewhere out on the Alaskan sea and my 3-year-old daughter was picking up black crabs with friends on the beach. I had flown from Alaska down to Seattle for 24 hours to see how much Anna could hear. As it turned out, she could hear nothing.
My mother-in-law was there, too. We’d been eating licorice together. When the audiologist said the words, “no repeated responses in either ear,” I put the candy down. The audiologist brought her finger to the bottom of a chart, below images of a faucet running and a bird chirping and a lawn mower mowing. “Anna has profound hearing loss. Which means she cannot hear anything at the limits of our machinery. She could not hear a jet engine if she were standing next to it.”
“Are you saying she’s deaf?” I asked. I had not heard the word yet. I was starting to tear up. I wanted to hear it clearly, I wanted to hear the sound of our future, hear the word deaf, hear the way it would sound when I told family members and friends what she was.
From May to September, my husband salmon fishes on a small island in Southeast Alaska called Sitka. We rent a house there with seven sea-facing windows that are always punctuated by rain and beyond those drops and the navy blue water are the many mountainous islands that jut up, sharp and tree-covered, from the fog-rimmed horizon. Sometimes we camp on an adjacent island and we won’t see or hear another human for days. Luke has fished there for 13 years. Sitka is a place of great beauty and great isolation and great amounts of precipitation. The summer Anna was born, the rain killed three people after it took part of the mountain down. I struggle there, having come from Colorado—a state with 300 days of sun and lots of close-by people and stable ground.
Last summer, Alaska meant danger. Not only because of the deadly landslides and the fact that we live at the foot of the tallest mountain, but also because we didn’t know if we could get Anna the care she’d need. We had never needed any medical professionals in Sitka till last summer after Anna was diagnosed with CMV—a random virus I caught while pregnant that crosses the placenta and can cause deafness, blindness, neurological delays, and total devastation to an infant’s central nervous system.
After the revelation in Seattle that CMV had taken Anna’s hearing in totality, I returned to Alaska and called the early interventionist team to come over and assess my baby. At that point in the summer, we didn’t know anyone who was deaf besides our daughter. The early intervention team didn’t either. The Orthodox priest in town and a friend of mine are the early intervention team. I served them tea and store-bought cookies and we sat on the carpet and talked to Anna like she was any other baby. The priest’s long white beard shook as he cooed to her and looked into her gray-blue eyes. Zaley, my older daughter, handed out Pecan Sandies dutifully. Anna was the only deaf person on the island. I was the only mother to a deaf child on the island. The priest said he didn’t know much about deafness. The one woman he knew who spoke sign language had moved to a bigger city where she could communicate with other people like her.
I thought of how Luke and I had decided he’d fish in Sitka indefinitely. I thought of how Anna’s aloneness might be indefinite.
Sitka has 14 miles of drivable road. For the rest of the summer, I didn’t feel it had any drivable roads. I felt like I had lost one of my senses.
When I feel overwhelmed, I read. Luke is not inclined towards research and cautions me to draw the line, but I thought then that to know all is to be surprised by nothing. Within a week, I’m sure I knew everything a lay person can know about CMV (which isn’t much, so under-studied and under-publicized cytomegalovirus is). I knew that if we came away from Anna’s diagnosis with just hearing loss, we were incredibly blessed. I conference-called with Children’s Hospitals and alternative movement therapists and friends who came out of the woodwork because of deaf family members and acquaintances. My parents’ neighbor had taught deaf children for 30 years. A distant friend was fluent in sign language because her uncle was profoundly deaf. Another friend’s cousin was finishing her PhD dissertation on the difficulties of hearing parents in choosing whether to cochlear implant their deaf children or not.
Never having heard of a cochlear implant (despite the hundreds of YouTube videos documenting the first time deaf children hear), I looked them up online. By way of a surgically embedded magnet, the implant bypasses damaged cochlea—tiny hair cells—and sends a signal directly into the auditory nerve. If you see a person with a cochlear implant, it looks like a large hearing aid connected by a chord to a suction cup on the back of their head. The hearing aid part is the microphone, which changes sound to electrical impulses.
On a day when the rain was coming sideways through the front door in Sitka, we stayed in, and Zaley and I watched the YouTubes of cochlear implants being activated. I cried. She asked what the wires were sticking to the kids’ heads. I didn’t understand yet. I thought sound would sound the same through the cochlear implants. I thought it was a miracle. I thought, why am I crying if Anna won’t always be deaf? When I look back on my summer self, I look so fragile and unknowing to myself even though it’s only been six months.
Having a deaf child changes your world quick. You notice the pitch of the wind. You notice the way your other child speaks, her shh‘s just perfect, how many letters are in a sentence like “I don’t know what extremely means, Mom.” You see that other children don’t wear anything on their ears. That every child you know—squealing on the slippery playground and petting octopi in the Science Center and slowing down on the dock when their mom calls “walk!”—can hear.
I was so tired. I took a two-hour nap every day while both girls slept, the quiet baby tucked into the nook between my heart and my ears. The auditory-verbal therapist we’d end up working closely with in Denver told me over the phone that choosing to do auditory-verbal therapy (AVT) was like being a mom times ten.
Being a mom times one was hard enough. Splitting time between Alaska and Colorado was hard enough. Now I found myself straddling so many worlds, my legs had not only returned from the initial announcement of Anna’s deafness, but I seemed to have too many appendages. One foot in the hearing world, one in the deaf. One foot planted in sign language territory, the other stuck on teaching her spoken language only. One foot was at home and one foot was in this new, forever place of confusion where I was an outsider to my own daughter’s experience.
Underneath every minute of cooking or speaking or driving or swaddling was a current of inadequacy.
When you’re seasick, you’re supposed to look at the horizon because it does not move. On Luke’s boat, I had memorized the outline of the trees on Biorca Island and rimming Salisbury Sound. When we tied up for halibut, I could always think, soon, soon, we will be home and there is a hot shower and I won’t have to look at the horizon because we live on it.
But having a child with a diagnosis you didn’t expect takes away your horizon and your experience of even the shower. In the shower, I could hear the water, I had the words for hot and cold. But I did not have even the simplest of signs for everything in Anna’s world. There were so many of them to learn (or not learn if we threw ourselves fully into the spoken language camp), so many choices to make unaided. Simple shampooing became a question of language. Language was confusing now, and confusion became anxiety. Anxiety became an issue of self-worth, of questioning myself as a mother more than ever. If Anna could not hear me, could she know me? It was like being seasick all day long.
Even though Luke drives his truck to the harbor every morning and then drives it back up our gravel road each night, there was one day I was online more than I should have been, and I left him a message to leave his truck at the harbor when he was done. At 5:00 pm, he unloaded his fish and called me. A friend came over to watch Zaley for an hour. I put Anna in the back of our old Chevy Suburban and prayed she would nap. Then I drove the long way to the harbor, past Totem Park then the cathedral then the old Russian cemetery nearly overtaken by ferns. The baby was quiet, and at the stop light in town, I listened to the gentle, puffing miracle of her breath. When Luke got in, I told him what I’d read.
“CMV is like, a really big deal.” I didn’t know how to bring him deeper than the stability and optimism I’d married him for. “It’s more serious than we thought. These kids are in wheelchairs. A lot of them have cerebral palsy. Some of them have eyes that don’t open.”
Any time in our marriage I’ve had trouble, Luke’s first resort is to calm the waters. I love him for this—for his ability to see way beyond the initial hurdle, and for his ability to plot the steps to get us over it. It’s how he got to Alaska in the first place: a Colorado boy whose dream was to be a salmon fisherman, so he left home, worked hard, bought a boat, started a business.
But this day, this time, as we took Anna from one end of the island to the other, he just looked out the window at all the wet green going by. I could tell that he couldn’t comfort me out of this one, which meant there was no salve for him in what we knew or in what we could or couldn’t do, either.
There was rain and rain and rain and we drove through it and under it and over it. An eagle left a tree and flew back to it. A friend passed us and waved, with no idea that we were driving around with our deaf daughter in the back and thinking about the rest of her life, the rest of Zaley’s, the rest of ours. At Mosquito Cove, we did a U-Turn through the fog. There was nowhere else to go.
Even though the rain was intense last summer, we would have three-day stretches of glorious sun. Out came the shorts and the coolers and the excited flurry of Zaley naked, running the hallway, and screaming “Beach day! Beach day!” My friend Jenn and I would text each other, “Did you see this sun?!” We would meet at her house and walk down a rocky path to the private beach.
Sitka’s tides swing to the extremes, the sea fluctuating sometimes up to 12 feet. At low tide, Zaley and Jenn’s son, Jake, could run out to a forested island where there are boulders to climb and plump mushrooms bordering an old and hidden rope-and-wood swing. At high tide, the ocean eats up the spit connected to the island, and then we are left to our big island with a long log the kids balance on as we eat our crackers and smoked salmon and drink our seltzers, the seltzers switching to beers as the sun gets higher in the sky.
After Seattle, I had stood in front of Jenn on that beach and sobbed. She held me there, on her shoulder, sobbing, too. “I just can’t believe it,” she said. She lifted her head and looked at Anna. She said it again. I said I couldn’t believe it either. Part of me still can’t, every time we enter a sound booth and I put earplugs in because the sound they are pumping into the room would damage my hearing.
“Nothing,” the audiologist says.
Each time, because I love Anna, because I think Anna is a genius, because everything is getting better and she is changing physically, I believe that Anna will somehow, someday, of her own accord, without a device on either ear, hear some of this. I know it’s delusional, but there’s nothing I can do about the way I ascribe hope to physicality. It’s the only way I can get through our seasons in Alaska—the physical beauty is what makes me believe we can be there happily, unlike so many separated fishing couples we know.
One day, when the sun was high enough to be crossed by the float planes bringing people over the island and the kids were clambering towards the old swing, Jenn said she didn’t want a beer. After years of trying for a second child and a miscarriage last year, she was pregnant. She was over 40, she was worried. If there was anything wrong with the child, her husband wouldn’t want to keep it.
I looked at Anna in my lap. I wondered if a deaf child would be considered a case in which something was “wrong with the child.” For the first time since I’d found out, I didn’t wish away her deafness. I wanted it. I wanted her. I told Jenn not to have tests run, that they would love any child, and maybe an unexpected child even harder.
A week later, Jake and Zaley were taking swim lessons together at the indoor pool when Jenn told me her ultrasound had showed a slow heartbeat. We were sitting in the bleachers, both of us crying then, while Anna’s steel eyes scanned us left to right, like she was reading. I told Jenn to keep celebrating that she was pregnant, that we would pray for a pick-up of the heartbeat. Jenn said that she didn’t know if her marriage could survive a complicated pregnancy or the revelation of circumstances you might call “special needs.” I couldn’t imagine her grief, and I had learned that it was better not to pretend to—that genuine sympathy, or even reverent silence (or, sometimes, disbelief, at best), is much better than pretending to understand. In fact, it was Jenn who had taught me that.
I didn’t know what to say. Sometimes, I fill my silence with quick little prayers. I picture them like tiny birds darting upwards from cupped then opened hands. But in the dim, white noise of the roaring indoor pool, I didn’t know what to pray for. At a Wednesday morning rosary group with other women and their children the next morning, another mom prayed for acceptance of all children with illnesses. Two days later, Jenn texted me. She didn’t want to dwell on it. She had lost the baby.
Because I knew Anna was different, I scrutinized her unlike I did Zaley, my hearing child, whose every early milestone and sound I took for granted. I learned to be slow with Anna, to study the patterns of her white-streaked irises as they scanned my hands making the “mommy” sign and the “I love you” sign over and over. I learned from the auditory-verbal therapist to turn her body when there was a sound she may have felt as a vibration. The only person Anna would take a bottle from was Jenn, and Jenn would sit with her on the couch, with the light coming in the long windows, the baby pulling the milk from the bottle and her wide eyes looking straight up at Jenn, and I would stand in the kitchen, my back to them for a few minutes to stop the start of tears.
Outside of fishing season, we live in a small, once-farmhouse just west of Denver. We have speakers in the dining room for listening to music while we’re eating at the table or playing on the deck. We have a doorbell. We have a TV and a CD player and a three-year-old who loves to sing. When we returned home in September, our home was as we’d left it, but it was as though even the air had changed. On my desk was a beautifully illustrated book I had ordered in Alaska for Anna before we knew she was deaf. It is called Symphony City. It is the story of a girl who is lost in a city, but then she finds music and she is not alone.
I look back on this past summer as though it was a wound. Every memory has a rawness to it: the first time I played music, months after finding out Anna was deaf, and bawling in front of Zaley who asked me, calmly and over the sound of the fiddle, if I would like to play with some beads. Or, finally gathering the courage to hear what it will be like for Anna to hear when she gets cochlear implants, and again, deteriorating when I heard the metallic, nearly toneless version of music we will be giving to her when we give her the thing we call music.
Wounds are a mystery. We cannot know their depths. We cannot gauge which elements of our pain will last, just as we never know which memories will remain the sharpest. I assumed music was ruined for me, not that it would be better than ever when I tried listening again a few months later.
It is winter now and Anna is over half a year old—over half the distance to her cochlear implant surgery. You could bisect the length of her life into deaf and being able to hear. Music fills our home—Luke on the banjo, Zaley singing “Let it Go” an inch from Anna’s face—and only on snowy days when we are stuck inside and my rainy summer emotions creep up, do I feel the inching up of a sadness for my daughter. But I have learned it is important to investigate sadness: am I sad for me? Or am I actually mourning something in the life of my daughter? Usually it is the former.
I grieved a choking kind of grief this summer, but this summer is over. Anna has more at her doorstep than at any other time in history as a deaf child. Technology will bring sound into her brain, and we will create its meaning. We have world-renowned therapists who are teaching me how to place consonants in the middle of words (piggy instead of pig) so she can hear or feel them through her rose-colored hearing aids despite the fact that her deafness—which is of a rare severity—is as profound as it gets. The virus that used to devastate children seems to have passed her over and left in its shadow an amazingly happy baby who chuckles when you put her arms in her sleeves.
When I cry, I cry for the loss of the life I expected, not for the losses my daughter has so far suffered. When I begin to go to what Luke calls “the general sadness department,” I turn off the music. At some point this year, I realized it was important for me to leave behind my immature, idealistic expectations and grow into acceptance at the same time as I’m trying to teach it to a toddler. My daughters should not have to carry the sadness that comes with being a parent to any child when we watch our children change in ways we did not expect.
Plus, I see now the surprise in Anna’s initial diagnosis and what all my online searching could never tell me: Anna merits nothing close to pity; she has given my life, and Luke’s, and Zaley’s, an unusual and special excitement. Every time she makes a loud giggle or a new noise or begins to look like she’s signing something to us, we become giddy. And, our audiologist assures us that the brain adapts to the sound it is given through cochlear implants, that what we hear as a simulation of their sound is not nearly as nuanced as it will be in Anna’s brain.
Here we are, heading towards a surgery that will bring back a sense she never had—something that still seems to me like a miracle, even though I know the science behind it, know the amount of electrodes that will be threaded into her miniscule cochlea, know her brain will have to work overtime to decode sound. I want Anna to learn any language she likes. But I love her with a fierceness that is beyond language—spoken or signed—and this keeps me from feeling that I have to decide which one we prioritize.
This is what I didn’t know last summer: that the best way to research Anna would have just been to love her.
I look forward to Anna hearing her sister’s voice go dreamy and husky when she’s telling a story. I look forward to reading Symphony City to Anna and getting to the last page when the girl hears her mother calling her home. I look forward to the last thing at night—or anytime Anna wants to, really—when she reaches up, and can take her cochlear implants out.
Anna’s cochlear implant surgery has been set for April. They will activate her devices just before Luke leaves for Alaska, and I’ll go up with the girls a few weeks later.
Part of me dreads next summer. Every summer in Alaska presents us with new unknowns: when should we find renters in Colorado, when will I have a baby, when will I go up with the girls, when will we stop expecting that we can expect everything? Also, I dread the rain, I dread having to do auditory-verbal therapy remotely by Facetime, I dread the absence of Target on the hardest days.
But part of me wants to bring Anna back to Alaska to hear it. Zaley loves the sound of the eagles (a gentler burble than you’d expect) and the raven that frequents our roof (making a “potluck” noise, like a jack-in-the-box being punted). There is the sound of the surf coming in over the gray, finely spread gravel and the purr of Luke’s engines as he turns them on and we sneak out past the no wake zone and into the hum of the open ocean.
In Alaska, there is also the loveliness of silence that only Anna can access—a flip of a magnet from the back of her head, and she is in a sanctuary I will never know.
When I picture silence, I picture Alaska. When I picture silence, I picture my Anna.
Megan Nix’s work won the 2009 Fourth Genre Editor’s Prize and has been nominated for a Pushcart Prize. She has been published in The Iowa Review, South Loop Review, The Denver Post, DiningOut Magazine, and elsewhere. Her blog at www.megannix.com details the journey of raising a deaf child and a hearing child in Colorado and in Alaska. She is also a teacher at Lighthouse Writers Workshop in Denver.