The Difference of a Different Child, and, Maybe Nachos

IMG_9699There are the things I could write, and then the other things I could write. I planned on writing a happier post about the piano tuner coming this week during Anna’s nap and how ironic it was that the piano was in Anna’s room (“She’s deaf,” I said. “Oh,” he said. “Well, that’s handy.”) I planned on writing about the shimmering, sundancing water at the beach, Anna scooting around on her stomach, trying in the cutest way to get her knees under her even though she sticks her legs straight out, pushes up on her tippy toes, and pulls herself forward on her elbows in a commando crawl. I thought of things late at night that I wanted to write. How Zaley told me she can’t wait to put a princess dress on Anna in the fall when she’s older (everything will happen in the fall!!), how Anna has started to wave when you say “hi,” just at the sound of the word hi, before you’ve even raised your arm. How we tuned up her implants remotely, and how she is turning to the sound of the slightest “shh” over her shoulder. How her condition has changed everything up here: how our friendships have both narrowed and widened, leaving no time for those we can’t really connect with or who expect more time than we have to give; and how deep–though brief–our conversations have become with the people who understand that between our five or six therapies a week, we can only do things as wedged-betweens, sporadically, snuck into the interims between OTs and AVTs and ASL and Skypes and swimming and gymnastics and napping.

But now, getting online to write all this, I finally got an acceptance email from the Baylor Parent-to-Parent Network for the National CMV Disease Registry. As an attachment, I received the names of the registered children and parents across the U.S. who have been affected by congenital cmv. This is a hard attachment to read. The left column gives the contact info of other parents, by state, whose kids have what mine does. In the right column are all of their symptoms. The symptoms make my chest tighten. I am not exaggerating when I say the symptoms seem like everything. Global brain damage, seizures, microcephaly, mouths that don’t close, G-tubes, progressive vision loss, total blindness, deafness, progressive hearing loss, inability to speak, compromised lungs, liver, spleen, esophagus. Massive reflux, immobility, spastic quadriplegic cerebral palsy.

And, so, now I feel I have to write about that.

IMG_0205Every single thing I just listed physically hurts me to think about. A headache began when I got the email. The headache continues. This is different from before I had Anna. Sure, the problems of other peoples’ children deeply saddened me. But now, all these things are not what happens to other children. Some of these symptoms are the things that could be in our child, just waiting, that could possibly still befall her. I read this list and I can feel, in part, the quality of these parents’ days, even if Anna’s condition isn’t half as advanced as theirs. Perhaps Anna’s greatest power is that she has been a portal to empathy, which is about one of the hardest things, I think, a person can attain. The mental act of “walking in another person’s shoes” has always felt arduous to me, never quite satisfying enough to teach the sought-after lesson. But in my daydreams and in this first year of Anna’s life, I have experienced a different kind of empathy on a biological, visceral level–one that cannot be conjured with mental exercise. This is a special kind of empathy, I believe, reserved for any parent of a child with a disease that can possibly be progressive: you operate, largely, in the alternate, imagined universe of everyone else who is going through this same state of half-curiosity and half-fear and, at least in my case, inside a thin membrane of hopefulness.

IMG_0174That thin lining of hope occasionally ruptures when I see another baby, Anna’s age, who is doing everything she would be doing had I not caught a preventable virus. These babies are walking, saying their first words, moving between rooms, all with what feels like an insulting obliviousness to their blessings. I watch them with awe and sadness. How quickly I have forgotten Zaley’s timeliness with everything as a baby (did she really [fill in the blank] this early??). How easy it is to wonder into the ether of the virus-free world. How hard it is to rise above my desire for Anna to catch up rather than be on her own time. But quickly I snap out of these moments of greediness to know Anna as the other baby, the non-cmv one she might have been; lately, she has been singing and squawking at alarmingly high volumes like an exotic bird and at the sound of her voice, I am instantly brought back to the wonderful her that I would not change.

I’m reading Alexandra Fuller’s newest book, Leaving Before the Rains Come, and of her often life-threatening upbringing in Zimbabwe and Zambia, she writes: “No one was too special to avoid suffering.” As I was reading this, I realized that, for most of my life–having grown up safe and cherished–I believed the opposite. Before I had Anna, I think I secretly believed I was too special to have a child with special needs. Those were other people, people with less healthy habits, or less means, or less education, or less this or less that. (I know, it’s stupid).

What I know now when I see a family with a special needs child is that they are people who contain an immensity of experience and, in most cases, that translates to knowledge. I know that if they are nice in the grocery checkout line, it may be taking them a shit-ton of effort, that day, to be that way. I can assume that they appreciate life differently, not in a sentimental way, but in a pragmatic way. They know the difference between an easy hour and a difficult hour. They don’t post dramatic photos of their frowning children on social media during menial visits to the hospital. They don’t talk about milestones unless asked. They have a sense of optimism that is unbelievable and uplifting and heartbreaking.

On the Parent-to-Parent list, there is a 23-year-old who has never slept all night (the longest she can sleep is 3 hours), who has never spoken words, but loves Mozart and opera. There is a 3-year-old who functions on the 1-month level. There is the child whose story is riveting to me, because he is from Colorado or he’s like Anna or something just moves me about it, until something is pulling my eye up, and then I see as my hand goes to my mouth, that there is also listed, under his birthdate, his deceased date, at somewhere close to his third birthday. Now it is clear. Now I really know how lucky we are. Now I am more confused: why do some suffer so much more than others, even when the causation is the same?

I think this would be easier if I didn’t believe in God. If a virus were just a biological mishap, I could pin Anna’s struggles to crawl or break a tooth on entropy. I know that when bad things happen, people often question their belief in a source of all-goodness, and because that is happening in my mind some of the time, I feel like a stereotype. I feel like people might look at the effects of a virus and say, “See? How can there be a God?” But then I look at Anna and I think, see, there must be one.

IMG_0371So, that’s what I had to write. I wish it were lighter. I know it’s all over the place. Two of Luke’s brothers are living here now, in the family room mostly, and our friend Jordan, another fisherman, is also here for the week. They are all just out of the hot tub and in their underwear, eating chips and talking about electronics for their boats. I like to think that if I look straight at what stress actually is, it kind of just vaporizes: stress is all projected, all based on a progression of symptoms that are not yet here. Right now, the kids are asleep and there is salsa and the really good chips we have here called Juanitas, and I see now that Luke has just pulled out some shredded cheese.

Leaving Trouble for Tomorrow

IMG_9679The girls and I arrived in Alaska two weeks ago. Along with a stroller, four carry-ons, a duffel-sized bag of snacks, a card that explains why Anna sets off metal detectors, and four suitcases, I also nestled–between sweatshirts and a wetsuit–an expensive, lent-out tablet that I’ll be using to program Anna’s cochlear implants remotely. Using Wifi, we’ll video chat with her audiologist, plug the implants into a special chord on one end and her head on the other, and we’ll be able to see how close her MAP is to what her brain needs to receive sound. Allison, our audiologist, can change the levels of the cochlear implants from Colorado; each of the 44 electrodes in Anna’s head indicate, onscreen, the optimum settings for her to hear normally by August.

When we left Colorado, I asked Allison if we should continue coming up here to Alaska when it might best serve Anna to be home where all our specialists are. But it turns out, remote MAPing is something audiologists are quite used to, as they have to do appointments at a distance for every rural deaf child in Colorado. Allison is Canadian and grew up at the same latitude as where we live in Sitka. She wants me to hold up the tablet while we’re talking next week and show her what it looks like. If it’s a day like today, the sky is like a dimensionless rectangle, a thick white poster board onto which have been etched dark blue mountains with slopes of an Irish green. Luke has the day off and he took Zaley down to the boat with his brother Max, who is here for a month fishing.

IMG_9558Today is what my friend Sara (who lives on a remote Alaskan island with her three children where her husband setnet fishes) calls a “grace day.” Today, Luke let me sleep in till 7:30. Today, I have the relief that ceases the hour-counting I often can’t help with young children in a rainy town: half-an-hour till the library opens. 2 more hours till lunch time. 3 more hours till nap time. Today, I have time to have a cup of coffee while the baby is sleeping instead of gulping it between “mmm’s” and “eee-eee-eee-ooh-ooh-ooh’s” and “buh-buh-buh’s”–all the sounds I ascribe to animals and vehicles I pull from a box to “check in” with Anna’s hearing every morning. Today, Anna is asleep without the threat of Zaley’s footsteps waking her. Today is a grace day, when lots of others days, I am asking for grace because I’m finding little.

When we flew into Sitka last week, I was filled with the familiar cocktail of dread and love for this place. It was partly cloudy and I could see the sharp tip of Mount Verstovia, still covered in shoots of snow since it’s earlier this year than I’ve come up in a while. We could see a silver boat cutting towards the airport and Zaley pointed and yelled, “That’s my Daddy!” Around us on the plane, we could feel the excited buzz of people coming to Alaska for the first time, the epic-ness of their adventure just beginning. I remember my first time coming here and how my love for Luke and the beauty of the place were a physical sensation pounding out in my chest as the plane began to descend.

IMG_9590These sensations are both still present every time I arrive. But every year, there is another layer of memories and complications through which I feel the thrill. Here is the yellowed roof of the hospital where we discovered Anna’s differences last year, where I sat through an ultrasound that would tell us if she would have cognitive delays for the rest of her life. Here is the bridge rising over the channel where I rode with her crying in the back of the car, for the first time understanding that it was a soundless action to her, a release of silence accompanied by an open mouth and once the car stopped, IMG_9902-2the magical appearance of a mom. Here is the house that I love, with the same baked-bread smell as last summer, a humid warmth, the same seaside view, the tall windows that I wake to each morning, the indigo ridges of the mountains so defined and so close they are usually visible even through a heavy settle of fog. Here is the lighthouse, steady as ever, red-trimmed, where Zaley wants to pull up a boat and live. Here is the beauty that can be both saving and shaming. How can I struggle so much to love a place so authentic, so exquisite?

Last week, we met my good friend Lisa down on Magic Island–one of many rocky beaches here that, at low tide, connects by a sandy spit to a smaller, explorable island. Zaley is easier this year, less afraid of crabs, more imaginative, loves to perform “releve’s” with her hands above her head and her feet lifted at the heels. Last week was the last time Zaley would play with Lisa’s kids because their dad, a pilot for the Coast Guard, accepted a job on the East Coast. IMG_9547Lisa and I talk about the struggles of motherhood, the way our children’s stories are not our own (much as we try to make them), the way we have both struggled to find God in a place so beautiful and yet so difficult. She told me something her husband said to her as they get ready to transition their family to a completely new place, somewhere that will be nothing like Alaska. Lisa worries about her oldest kids in high school. I worry about the pink that has showed up in Anna’s eye, how maybe it will become one more, unexpected cmv-thing: like the sneaking up of her total loss of hearing, what if this symptom (very likely just conjunctivitis from a recent cold) is going to become a permanent loss of vision? What if this is the first sign of her blindness? I don’t want to lose anything else of Anna’s in Alaska. Lisa’s husband had said to her, as she worried about every ensuing year: “Don’t borrow tomorrow’s troubles.”

IMG_9581This, I believe, is easier for men and children than it is for women. In a mother’s world, today’s troubles–a short nap, an eye that goes unchecked–become tomorrow’s. He’s right, of course, that today is more important than fear, but this is a hard hard lesson for me. I have already plotted out my happiness according to Luke’s days off. The following two weeks (no days off) will be difficult. IMG_9909Early July is glorious, with five days in a row, even if he’ll be commercial fishing for some of them. In front of me, Zaley wants to know what’s for lunch, if I’ll play librarian with her. Anna chuckles–an excited, panting-type laugh, with tongue out–when we are eating and she hears us saying “mm, mmm, mmmmmm.” She is lifting her arms, face beaming, when I say, “up!” Children don’t know what’s next, ever. I envy them their unawareness of the future, the way a simple action, a gentle lifting up from a chair, is all that’s needed for them to feel joy. At the same time, I don’t envy them because receiving their joy also brings it to me in a way I never experienced–especially here in Sitka–before I had kids.

When I used to come up, there was a loneliness and ennui that have now been drastically reduced by the companionship of other mothers who are close in proximity and in heart. Moms whose husbands fish/fly/leave in the night to rescue other men out in dangerous water or compromised vehicles, women who understand what it’s like to have to give oneself entirely here to what sometimes feels like “a man’s world.” The truth is that this island is mostly an island of women. The men are, in large part, where we cannot reach them. Because I love my husband and because I tend to drink from the cup of never-enough, I believe his distance in time and space is what makes this place hardest.

IMG_9466What is not hard is knowing that we’re giving our girls something refreshing and real instead of going to the pool every day (which is what I, in all truth, want to be doing). Greased watermelon contest over salmon fishing? Yes please! The smell of grilled burgers over fresh yellow eye we caught ourselves? Yep! Sweat over sweatshirts? Sold! But I see absolutely clearly that Anna and Zaley love the things we do here. The beach is full of rocks for gumming and throwing. Because of a warm spring here, the berries are already out, and we pick a bucket of them on the ten-minute walk down to our mailbox and eat them all up on the way back home. We go to the playground at 4 when the boats are coming in and the rain is minimal enough to dismiss. We take long baths, the three of us, when the wind is too much for me to get them layered and ready.

IMG_9647Throughout every activity, because of our auditory-verbal therapy and because I want Anna to know what sounds mean and to be able to speak them clearly, I am the constant narrator. Pluck, pluck, pluck, we are plucking the berries. And, back and forth, back and forth go the swings, or, round and around go Zaley’s brown boots down the spiral slide. In the bath, even though Anna doesn’t wear her implants, I find myself still narrating as she slaps the water and pauses for effect. Like other mothers of deaf children told me, it is becoming second nature, this play-by-play voice of verbs and onomatopoeias. But for me, it’s not just second nature–not here, not during this season. It’s becoming an extra layer in this life, in this place, of layers. It keeps me here, on the floor with my kids, instead of in my head, in that down-south summer of my own childhood that I long for painfully with its chlorine and heat and picnics.

Pitter-patter goes the rain, and splish-splosh goes Zaley in every puddle. Chh-chh-chh went the quillback we pulled up on the line today, IMG_9874Zaley’s first of the season, the mountains all around us in our own little fishbowl of sounds and beauty, struggles and contentedness and all kinds of water. I realize that being Anna’s soundtrack is helping me to not borrow trouble. To tell Anna the story of here as it is happening, not as I once excepted it to, not as it maybe someday will be.

Two Implants, Two Owls

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Anna’s activation was two weeks ago. I’m not sure what to write about it, so I haven’t been writing. When I rewatch the video, I realize that activation videos don’t feel the same when you watch them as they did when you were in the room during the introduction of sound. In the room, you are nervous that they might not work. You are nervous that maybe the grandparents have come all this way to see nothing. You are nervous that your child will not like this thing upon which all your months of hoping have hinged.

IMG_9132Then, when Anna did hear, and when she did just what we wanted her to do (a quick lift of the head in recognition and a reaching for me), we were so surprised, we didn’t even say the right things to her. The week prior, Michael had asked me what I was going to say to Anna. “Probably her name,” I had said. AN-NA. A perfect name for a child learning to hear, with intonation that rises and falls symmetrically and letters she will be able to say early. But I didn’t say her name. I thought I would cry, but I didn’t. As prepared as we were for the emotions and surprises of the morning, I was still overwhelmed. The room felt a-tingle with anxiety. It was snowy outside. I wished I had washed my hair. Anna hadn’t napped. I couldn’t quite see her face where I was sitting. Maybe I didn’t cry because I wasn’t really ready.

When we got home that day, the gathering of sleet was weighing down the cherry blossoms in the backyard and there was a canopy of white petals and snow over our back windows. Anna didn’t want to keep the implants on. The world was supposed to be changed and it seemed like a winter that went on unchanging, without end. I wanted to swim, to shed everything weighty underwater, but I couldn’t. I didn’t want to leave Anna. I held her in my hands and wondered if I would see anything that showed me she was still hearing. She pulled the implants out with both hands and threw them on the floor.

IMG_8964But now! Now we are two weeks out and each day, with a skinny remote I carry in my purse, we have upped the amplitude so her implants meets her brain’s prescription (we know this from the ABR test that shows the minimum and maximums she needs to make out every tone beginning with the middle C). Now, we see her changes and hear her changes, and I am so ready. It’s like we flipped an ON switch that was connected to so many other things. Even though she’s still toothless, Anna is eating pea-sized bites of salmon and burger, blueberries I bite into quarters, whole jars of winter squash. She is making raspberries with her lips when I say the car goes brrrppp beep-beep. She is waving to us when we wave to her, her hand tentatively–thoughtfully–opening and closing “like a small starfish,” my brother David says. She claps when I clap. She breaks into a grin when Zaley plays the Doodlebug song. She is laughing more than ever and she sounds like a Tickle-Me-Elmo. This all happened last week. It could be that she’s 10 months old. Or it could be that hearing has changed her understanding of what’s around her, what’s within her, what’s possible to receive, what’s possible to give.

I realized this week that for much of Anna’s development, I have been doing subconscious subtraction and addition: yes, she’s 10 months old, but she’s more like 6 months because of congenital cmv. Or, she’s 10 months old, but she might not have teeth till she’s 13 months old because, as my mom’s friend Rosi so nicely put it, “Her brain is busy with other things.” When we first found out that cmv causes “gross motor delays,” I shrunk in the shadow of that dark, impaired phrase. There was one doctor’s appointment when the receptionist handed me the milestone questionnaire with a white board marker–the questionnaire where there are three columns of bubbles, and they are: Always, Sometimes, Not Yet. While Anna sat quietly in my lap, I filled in just about every Not Yet. Our kind pediatrician, upon taking my clipboard and seeing that the marker had been partially removed by falling tears, said I don’t ever have to do those again when we come in.

FullSizeRenderBut now that so much of Anna seems to be revealing itself to us, I realize that because so much of her development is late onset, I can see with much more clarity the spreading out of her stability. Because I know Anna is fighting something inside her every day, I am super proud of everything I witness; milestones are miles marked with big gleaming boulders instead of signs passed at fast speeds that go unnoticed while watching a neurotypical child discover and grow. In the movie The Dropbox, an amazing man in South Korea who adopts orphans left in a mailbox outside his door says of kids with special needs that though much of the world looks upon them as an affliction to their parents, their purpose in the world is to teach us something about ourselves.

Anna is teaching me what it means to value movement, to value something as routine and automatic as the act of eating, to value the hard work of true listening. The other night, she woke at 3 AM and cooed in her crib till I took her out to nurse her. While she was dozing at my chest, two owls began to call to each other just outside the window. I know there were two of them because one owl’s higher pitched response would interrupt the first owl again and again. The second one, the quieter one, seemed to have something urgent to say. I wondered if Anna could hear it, then I remembered, she didn’t have her implants in, and that she is deaf. I wanted to tell her about their sound. One day I will.

Preparing for Sound

IMG_8808Anna has two days left of not hearing before we activate her cochlear implants. We have five days left before we move out of our house for the start of fishing season. As I sort through toys and make piles of what should go to charity and what should come with us and what should go in the basement and what should stay available to our renters’ two-year-old, I find I am also sorting everything into what makes sound and what doesn’t. In fact, this is how my brain has been sorting our existence since we found out Anna was deaf.

In the “save” pile, I’ve set aside the toys that became annoying in Zaley’s baby years, and have been turned to OFF for the last 10 months. (As soon as Anna failed her hearing test when she was one day old, I didn’t want to hear any of them). Now, I’m testing them all, switching them to ON, and finding I could still sing the tunes on just about every electronic walker, baby cell phone, and music box buried in our bins. I wonder now, with new appreciation for any kind of aural emission, which songs are pretty. Which ones would even a baby find redundant and tinny?

It’s an odd question, what will Anna actually like to hear? Will she have auditory preferences? What will be soothing to her and what will be noise? Because I don’t know what sound sounds like through a cochlear implant, I am hesitant. I don’t want to bombard her with rasp. I’m thinking we will focus more on organic sounds–conversations, stirring and pouring, the gentle, hungry clucks of our chickens. There are the animal books we’ve been showing her that snort at the push of a fuzzy pig’s ear. The guitar dog who howls Elvis tunes. I found a wooden recorder in my parents’ basement that Zaley used to drive me nuts with, but that I now see as OPPORTUNITY.

listeningtobanjoMy dad has an old folk instrument called a Kalimba that, months ago, I liked to lay Anna against so she could feel the vibrations. I can’t wait for her to hear it now. It sounds like an island, like a light-footed summer ditty plucked out by someone small and happy. Luke plays the banjo. I have an old guitar that never took. There are so many sounds for her to bathe in, I am afraid that my natural tendency to overdo everything will also over-stimulate this sense she wasn’t necessarily ever supposed to have.

I feel a kind of protectiveness over Anna’s deafness this week. Her silence is something sacred, and though it’s something that she can return to without devices, on Friday morning, at 8 AM, we are forever departing from the Anna who never heard. I wonder if some of the adults in the Youtube videos of cochlears being activated are also crying for the life they have lost, now that they have sound. With any big gain, there is the loss of the prior era. That is what I’m feeling. Anna’s era of total deafness will be something she does not remember. I am trying my hardest to document these days so I can tell her about them…

IMG_8860How Zaley comes blasting into the room where Anna’s asleep to tell me “I AM PUTTING ON ACCESSORIES FOR A WEDDING!!!” and how Anna doesn’t move. How I can call down to Luke at the top of my lungs to PLEASE BRING ME SOME WATER while Anna is nursing to sleep on my chest and the only recognition she gives is the smallest nibbling twitch. How Zaley’s maniacal laughter makes Anna burst into short, fast giggles even though all she can see is Zaley bouncing and grinning and shaking her blonde too-long bangs like a rabid dog. Anna likes Zaley the best. As soon as she sees Zaley coming, Anna’s hands turn to fists shaking in excitement. Zaley can fling a shirt around like a lasso or wag her tongue or pat Anna’s chest 30 times in a way that you would think is too hard or too annoying, and Anna laughs till she squeals and has to take a breath.

It is a marvel and a joy for me to witness that a sense of humor has nothing to do with hearing. One of the things I am looking most forward to is Anna hearing her own laugh.

As we get ready to say goodbye to our house and goodbye to this first year of Anna’s silence, we do the requisite late April accommodations for other people to come live here. If I were a better person–if my generosity rivaled my husband’s–I would see this as a perfect exercise in sacrificial love. Instead, I look at our golf course-green yard that Luke has spent hours pruning and fertilizing and de-twigging, and I think, why are we leaving this lovely place that is just unfurling into full color? We planted the hearty stuff that should stick around till September: cauliflower, kale, radishes, carrots. We hung a hammock under our pergola and Luke fixed a rope swing knotted around a little green seat. The neighbor’s cat was trapped in our basement crawlspace for two days, but we rescued it, and built shelves and filled totes and threw away the 17 lidless sippy cups. As I write, I hear the metal-on-wood banging of the sliding bathroom door, which comes off the rail any time an unsuspecting victim goes in to relieve themselves. Luke is fixing everything so it is perfect before we leave it.

IMG_8633That’s how I feel about Anna’s quietude these last few days: I want to leave it perfect, leave it intact. I don’t really need to do anything different to honor or change her silence–it is; it just is. But I am acutely aware of her realm of quiet now, just before we say goodbye to her hour-by-hour soundlessness. It is so much a part of her as a baby that I feel I will miss Anna’s baby months even more than with any baby because these months represent something that seems almost mystical–an acceptable reticence we shared through eye contact and gesture, movement and stillness. We knew that our communication must be different than the default, vocal language of hearing mother to hearing child. And Anna seemed to always be focusing, even before her eyes could focus. From her very beginning (the just-born baby who did not cry) the peace of her mental, soundless state seemed embodied in her serene, low-key demeanor.

Who knows how this will change. Who knows how sound will alter the dynamic. It is like our house. Who knows how the rugs will smell when we return, what the garden will look like, what we will still be able to eat.

IMG_8602The other night at dinner, Zaley covered the whole scope of what I should be thinking, when she prayed, “Thank you, God, for giving us pizza and cochlear implants. Thank you God for giving us the garden. Thank you, God, for giving us…everything.”

The Thing Anna Already Is

IMG_8723The first time I felt the permanence of Anna’s cochlear implants–of Anna’s deafness, maybe–was when the nurse called my cell phone in the middle of her cochlear implant surgery to update us. We were in the surgery waiting room. Luke was eating a breakfast sandwich and I was looking up at the screen that looks like the Departures and Arrivals screen in the airport. A.W.: Procedure In Progress, the line said. I must have looked at that line 200 times–each time, picturing Anna’s body limp on the gurney, and each time, wishing the line would switch to In Recovery and I could push my head against the side of hers, warm and pulsing and the doctor saying he was done. When I answered the phone in the waiting room, the nurse said, “Dr. Kelsall wanted me to tell you he has completed the left ear. He’s closing it up. Then we’ll begin the right.”

IMG_8731At that moment, I felt this wave in the brain: elation, gratitude, mostly relief that her anatomy could support this apparatus we have hoped for and anticipated. But also, if I thought deeply enough and if I continue to think deeply enough–below the sweet reprieve of a successful procedure and below the thanking God for adept professionals and below the tingle of energy that comes with any step towards transformation–I also felt a kind of settling I didn’t expect. I can’t describe it. It felt like sand being poured into my core, and all those granules landing in the last place they would ever land. I don’t want to call it disappointment, I want to call it acceptance. But not the end-of-yoga-class, melty, at-ease kind of acceptance. The kind that said to me: this is for real, this is the way it will always be. We just put a device inside our daughter’s head that will remain there for the rest of her life. If she weren’t completely deaf, she is now. And if she ever does want to hear, we will be dependent on technology for her to be able to do it.

IMG_8763I guess I consider myself a bit of a Ludite. I think that, more often than not, technology makes us less humane. I feel this way because I can feel it happening to me. I feel the pull of my iPhone away from the four walls around a moment; I feel the temptation of Facebook away from my in-the-flesh friends; I feel the compulsion to photograph any moment that is beautiful or funny or places my life in its best light. Not only is it a blessing when I forget my phone at home because then I can just watch my kids, the absence of my phone reminds me how to take joy in. Zaley went through a brief phase where she didn’t want to be photographed. I could see that she didn’t have any problem with being caught onscreen; she simply didn’t want to be stopped. She knows what I have to be reminded of: that living through the devices around me usually removes me from my sensory experience of the world.

How is it, then, that a person like me can believe that a new technological invention (cochlear implants) will make my other daughter the person she might one day want to be?

IMG_8727Because I am making a very intentional exception, I believe. Because my sensory experience of the world is absolutely dependent on sound. Because my daughter had absolutely no access to sound. Because cochlear implants will, in their own way, give it back to her. I like to picture it like this: in today’s world, we usually receive music by way of technology as opposed to in-person. We don’t sit in concert halls each night of the week. In our house, there is always singing, but there is also the radio and the computer and CD’s. It would be hard to find a person who contends that the radio and the record industry have ruined humanity. (Far harder to find than someone who’d say the same of the smartphone). If I think of cochlear implants as Anna’s little internal radios, I feel more certain that this technology will not make her less humane. I feel that–like the presence of music in mine–the presence of sound might improve the quality of her life.

Still, one of the hardest things about watching Anna suffer and recover this week is that this surgery was optional. As in: not medically necessary. As in: I chose this. While I held her moaning in the recovery room, her IV-punctured hand wrapped up in a mitt of gauze and her head encircled with blood-spotted pads, I asked her silently for forgiveness for putting her through this surgery so she can be like me.

IMG_8755The day before her surgery, Luke and I walked around our neighborhood and talked about her operation. For the first time since we’d had Anna, Luke said that he wasn’t excited about surgery, that to him, it summoned some sadness. Sadness about what it meant–that Anna’s deafness and our ability to hear have created an obligation for us to make her life easier (or less isolated, or more full of potential, or whatever other phrase you want to insert here that doesn’t quite articulate the love-filled yet gaping divide a hearing parent tries to leap over to reach their deaf child). I agreed. There is a sadness surrounding this week, especially because we haven’t yet turned on her implants, so our joy of her recognition of sound is still just projection. We decided that this sadness does not, cannot, confuse our decision to implant her. When you are given an invention that will serve as a bridge between your child’s language and yours–your child’s life and yours–how can you not choose to cross it?

IMG_8785Even though we are still working to learn sign language, we are struggling. I’ve heard that a hearing adult (without a deaf parent or deaf sibling) will likely only reach a kindergarten proficiency in ASL. There is no country to go to where all the inhabitants are deaf. Unlike every other language you could learn, there is no opportunity for immersion. There are classes at the community college and the Deaf School and the deaf adult who comes to your home, but all day, every day, the reality is that we hear each other and we hear the radio and we hear the T.V. and we have no fluency in our fingers.

Even though not a single deaf person we know has questioned us about our choice to implant Anna, I feel that I am still defending it despite the fact that there is no other option to give her full access to a language we are qualified to give her. I see here that I am still defending the decision, most of all, to myself.

Her surgery was three days ago, and she seems to have fully healed. Her sleep is back to normal, she doesn’t need Tylenol anymore, and she seems to not notice that there is anything new inside her head. I know she is ok, and yet, behind her ears are the steristrips we can’t change out till Friday and there is the dried red-brown of her blood. Her nose spontaneously bleeds and I have to tell Luke while he’s holding her that it’s dripping onto his sleeve. Whenever I see any of the blood from this surgery, I am not 100% sure we have made the right choice, even though we couldn’t have made any other one. Anna reminds me that we don’t always get to make the best choice. We have to make the best choice available.

FullSizeRenderEven more than Zaley as an infant, Anna has always been calmed by the open sky and a slight breeze. Today, she wouldn’t take an afternoon nap, and as the wind was whipping off the mountains and the sky was turning a dark, pre-tornado blue, I put her in the baby carrier and walked around our streets. The same flags waved on neighbors’ poles, the same neighbors waved from their drives. But now our house and our walks and our child are different. Today, as I cupped both sides of Anna’s head in my hands, I could feel the swell of the quarter-sized magnets under her skin. She was looking up at me and smiling her smile–the one that knows something maybe I know, too, but can’t quite access. Like a word on the tip of my tongue. Anna is that word. Yes, you almost have it, she is saying, this thing I already know, this thing I already am.