The Parts of Speech for Here

FullSizeRender-57Anna’s progress has been so fast and enthralling, it’s hard to write about it without seeming sentimental and braggy. She’s saying Mama and Dadda, albeit sparingly, and more frequently, words like hot when she touches my coffee and up when she hinges to standing. It’s possible that when she screams “Yay-Ghee!!!” she means Zaley. She’s 14 months now, but given that we activated her implants only four months ago, we should conservatively expect her to have only reached four-month speaking and listening milestones at this point (babbling, cooing, some usage of vowels). I never forget that she’s deaf, but I do often take for granted her hearing. Every day, she does something new, and each time there is a newness, I stop to marvel that this child of ours whom we thought would never hear or speak now swivels her head to her name and lifts an upturned palm when I say, “Where’s the ball?” or “Where’s Zaley? Where’s Daddy?”

IMG_2037Here, we have no obligations besides Anna’s therapies and it feels, in some ways, that I can surrender to our new language of narrating for her much more completely than I can at home. We don’t drive much, and our plans often come the day-of. On Tuesdays, we have our online Auditory-Verbal Therapy, which is basically a video conference with our therapist at her quiet Denver office, on one end, and, on this end, an hour long spectacle of trying to keep Zaley from placing her body in front of the camera on the iPad, keeping Anna from grabbing the iPad, carrying the iPad from room to room to distract from whatever meltdown is happening, and trying to make breakfast, feed breakfast, and listen to ways I could be adding more language to every activity, every motion, every single thing. The goal is that we will grow Anna’s hearing and responding a year’s worth in only six months.

IMG_1541It feels, as a writer, that all of my work is aimed at adding accurate language to real life. This kind of linguistic addition to Anna’s development is oddly what I’ve trained for. But it comes with the same impediments as adding language with writing does, too: fatigue, monotony, feeling that no matter what, there are not enough words or enough time to supply sufficient verbiage to the complex and fleeting experience of life. How do you catch up on a near-year of silence? Do I say that the salmon we are eating says swish, swish, swish or does that confuse the sparkling animal on the end of Zaley’s line? Also, is it respectful of Anna to always be pumping sounds at her? Sometimes, don’t we all need–especially a deaf-born brain–some peace, some moments that do not need to be given parts of speech?

FullSizeRender-54Despite the hassle of remote therapy, I will say, it is working. Anna has started to give a conditioned response we’ve been working on for months: when I hand her a pink or orange or yellow puffball Zaley picked out at the crafts store, I make a sound, and then Anna holds the puff up to her ear, raises her eyebrows (mimicry is the goal of teaching a conditioned response), and then pushes it into a lidless water bottle. Later, this will be how she shows us that she is hearing all the sounds. (Eventually, if she doesn’t put the puff in the bottle, she didn’t hear it). And, naturally, if she’s not hearing the sound, she won’t be able to say it, use it in words.

FullSizeRender-55Add to her language all the other ways Anna seems to be erasing her diagnosis from my daily thoughts and I would say we have arrived at a place I thought impossible last summer in the shadow of her diagnosis with congenital cmv: she stands up fluidly, as though she doesn’t need to think about it. If I lie on the ground, she smiles a wide and fierce oval that reveals two close-together teeth on the bottom, and she clambers up me, hissing and screeching, smiling and drooling, like a tiny dragon in a headband. She sleeps, she eats, she is a constancy of surprises.

I have spent a great part of Anna’s infancy in fear and thought. Now, it feels like her place in my life is shifting to one that I can observe with less fear, more confidence in the unknowns, a kind of wonder that washes me in curiosity and pride rather than questioning and guilt. I think of all the other mothers of children with Anna’s condition, the ones who have it worse, and I grieve for their longer road, the despair in a mother that accompanies any lag in any child’s body. FullSizeRender-56I continue to wonder: how can all children be innocent and good and some must bear the badness of a virus (or whatever) in a much more impeding way? I do not believe in karma. I do not believe that anything we do or have done causes this kind of suffering. I do know that children do not need mobility or speech to astonish us; more often, it is just a look in the eye of a child that fixes me in time, roots me to something huge and spreading and wordless. I also know that mothers who suffer greatly have lives that bloom–not slowly or reluctantly, but wildly and wisely–from an origin of darkness. I know because of the emails from other cmv moms who have read this blog. You, moms, in the U.S. and South Africa and New Zealand and Europe, thank you: you are the main reason I write here. You are the boat that arrives at this island unannounced. You have lights and oars and open hands I can touch late at night when I reread what you have written to me.

FullSizeRender-53We will leave this physical island in two weeks. I think about time so much here that I wonder if I am slowing time down. The last month has felt long. Kids here have started school, some friends have left for their homes and for the beginning of school down south. I told Luke the other night that part of my struggle here is that no day feels different. Fishing season affords little novelty, no weekends: up with children, play with children, feed the children, repeat. Living on an island doesn’t help. Drive to town, drive home from town. It is like a long hallway of rain. And it can feel like a season-less season here, the sky low and immobile, the trees lightly shaking, the temperature at an incessant hover of 60-degrees.

The last three days, though, Sitka erupted with sun. You can see all of the mountains, the dramatic slate stones at their peaks, the named ones–Verstovia, Harbor Mountain, my favorite and the most majestic: The Sisters–rising above the town’s yellows and reds and browns with a grandeur I have never seen anywhere else. When you drive on a sunny day, it is impossible to keep your eyes on the road, the mountains drawing all attention, showing off after such long stretches of being shut in.

IMG_2309Today, there were kids launching off the dock into Swan Lake and people summiting Gavin Ridge, and we passed everything and would have called everything lovely and we felt giddy and summery because everything’s sunny and we wore tank tops and we were going to the beach. Anna sat in the ocean and squeeled like a happy pig. Zaley covered the baby’s legs in mud and a friend watching with her son said, “Now that’s what it’s all about.” Both girls could hear the water, the waves never large, just a lapping that repeats comfortably, like the sounds we are always offering Anna. She points at the ocean vigorously any time we are up close, like she’s showing me something way out there. Dad? A low-flying float plane? Land? Maybe here, just here.

Hummingbird Before Dinner

FullSizeRender-48After two months of good weather, the rain has finally arrived. It is sifted and fine, like a gentle snow, and out in front of the house, the creek has turned to an ice cold barrelling-down. The sound of the pounding creek reminds me of last summer–like everything up here does, and maybe always will–and it reminds me of how much easier this season is, with Anna’s diagnosis no longer a diagnosis, just a piece of us, like a small tag inside a shirt with fine print I don’t usually lean in to read.

IMG_0893Anna is crawling fast now. She gets her knees right under her and asserts herself onto stool rungs and Zaley’s back while she’s doing a puzzle. Anna likes to play with piles of clothing (no shortage of those), and she’s fascinated by her shirt sleeves, pulling her arms inside them and staring into the wrist opening with amazement. She had a “language burst,” as AVTs call them, erupting one day, during church, into yadadadadaDADADADA, and Zaley and I almost had to excuse ourselves we were giggling so hard.

IMG_1043There is one week still left in July, but my mind is already on Colorado. What our kale might look like, where we will eat, how late we will sit on the porch while the girls play in the driveway, when my family and Luke’s will come over to see how the girls have changed. I am counting my eggs before they hatch, I know. But when the rain started coming, my heart started leaving here. I forget, during the stretches of summer when Zaley can ride her bike at 4PM or we can load up and walk down to Eagle Beach in the long hours before dinner, that this place changes drastically when the skies turn white and covered and we pass hours figuring out how many items can be made into tools that vets or dentists would use.

FullSizeRender-50While Zaley tinkers around my body, fixing any malady she can think of (casting a broken foot, extracting a newborn baby, sucking out an infection), I watch the pace of the rain change outside the window. I think of rain tomorrow, rain last summer, rain next summer. I imagine landslides, seek the slightest swaying of trees when I look up into the fog-frosted forest you can see through the high windows of our front door. I picture tsunamis, if we’d have time to drive higher, if our house is high enough up that the water would stop before it reached us. Luke says there’s not going to be another landslide and that tsunamis come every thousand years, but the anxiety of last summer’s disaster never left me.

“Is three inches in a day, like, a lot-a lot?” I ask Luke, after hearing this weekend’s forecast.

FullSizeRender-49“Not like last summer, if that’s what you mean. That was six or seven inches in one day.”

“Is the rain here to stay, do you think?” because the weather in Alaska makes a child out of me.

“No,” Luke says, dismissive about the rain but patient about my obsession. “We have LOTS of time here still. There will be more sun.”

This gives me both dread and hope about the rest of fishing season.

Sometimes I wonder if I would be happier if we didn’t come here. But then I think of how bored I might be at home, how the heat might make for malaise, and how young children make the romantic side of malaise (lying around, reading and drinking, which I was really good at in New Orleans) inaccessible. Also, I think of the dangers of Denver, and while there aren’t earthquakes or landslides or tsunamis, now there is the imminent threat that it’s a big city inhabited by human beings.

This summer, with a horrific act of violence, it seems, every time I turn on the radio, I can see why people would come to Alaska and never leave. We don’t lock doors, we leave the keys in the ignitions of our cars. We don’t even have working locks in the cars. If you try to push down the orange switch that would lock a typical car door, ours firmly resists, as though it knows its uselessness. There’s crime here, but it’s quiet, and mostly confined to drug users and drunks. I never really think about our safety here, just our survival.

FullSizeRender-51I’ve been working on a long piece about cmv that took a month out of me. I sent the girls with friends or babysitters and sat in the library for a few hours a few times a week, looking up from my computer to the stretch of sea where the boats come back in past the lighthouse and the sailboats and the old white two-story which used to house the newspaper and now sits sea-salted and peeled down at the tip of a rocky spit. I sent the piece out. It has already been rejected. I sent it out again. I am not sure it is the story anyone will want to tell. It is amazing what I found out or had more strongly confirmed: that most med students don’t know about cmv, that congenital cmv is the most common infection at birth in the U.S., that if I had known to avoid Zaley’s saliva while pregnant, it is almost certain Anna would not be deaf.

But lately, with the article behind me and Anna reaching milestones I wasn’t sure she’d ever reach, I find myself putting cmv temporarily to rest. Like a virus does in actuality, my focus on cmv flares then recedes. Anna’s changes make the latter happen readily, at least right now. She sprouted a tooth! She’s saying BA-BA-BA. She is able, sometimes, to pull herself up in such a way that she stands, even if it’s just for a second and even if it’s just because she locked her legs out in the way her OT’s say she’s not supposed to do.

IMG_0867-1Our AVT says we are doing everything right even though I don’t tell our AVT that some mornings, I’m too lazy to make all the Ling sounds (AH, EE, OO, MM, SS, SHH) over and over again, and I don’t tell her about the other half-hour some days when I take Anna’s cochlear implants off and she scoots around like a silent little caterpillar eating grapes off the floor and I don’t have to worry about her chewing her devices, she can just be the now-mobile, deaf baby that she is. When she has her implants off, I still look at her and marvel that she cannot hear a thing. How different her existence will always be.

When the girls wake up from their naps today, we will go to the grocery store because what else do you do on a rainy Sunday evening in Sitka? I’ll make the barbecue-basil burgers my mom makes at home. I’ll think of my mom tonight, like I do every night, when I’m making dinner and I think of how women have done this forever: the hardest job–the home, the kids, the meals, the kids, the home–a cycle that has repeated since the beginning of time and that repeats every day in our little house here, some days more smoothly than others, some days with more precipitation, but always in the same ongoing and invisible communion of all mothers getting through all days.

Thinking of my mom–and all the moms–is a salve similar to knowing that the same prayers we say are being said at the same time of day the world over. These thoughts keep me from feeling so fully that we live on an island. The meat is thawed, I can hear the baby bubbling towards being awake. Just now, a hummingbird hovered at the window, the unthinkable speed of her wings undeterred, I guess, by all this rain.

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.