The Neurodevelopmental Clinic

imageLast Friday, we had the neurodevelopment appointment for Anna I've been anticipating for six months. Part of me didn't want to know if Anna has any neurological deficits--what would we do if we found out, for example, that she has abnormal wrinkling in the brain? Would I treat her differently? Would I lower my expectations? Would I attribute certain characteristics of hers to something that could potentially be fixed? imageI decided a few months ago that the answer is no. We would not treat Anna differently. I honestly would not have any expectations other than what I already expect, which is that she will surprise me every time she arrives--either early, on time, or late--at any of her milestones. I do not feel that we should have done something for Anna that we didn't (besides preventing CMV in the first place, in-utero, but that would have been impossible because I didn't know it existed). All those no's are why I kept the appointment. I felt that I owe it to Anna, later, to provide her with information that might be considered a baseline--or, proof that she is as unhindered as we could ever have hoped. I want her to look at data on herself for the rest of her life and feel like a champion.

imageA year ago, I'm not sure I would have said the same thing. A year ago, Anna was four months old. I was scared. There were a lot of new acronyms to absorb--conditions, support groups, interventionists, therapies. We didn't know if Anna would ever sit upright unsupervised or if her auditory nerve could support cochlear implants. On Friday, I sat in front of two doctors who opened the door with immediate surprise to find this tiny child--she's the size of some six-month-olds--who was standing up and waving her jelly fish/diva wave (the hand slowly petting the air), who cruises between bodies and chairs and sits on her heels and raises her palms and chirps out her ideas.

imageShe is affectionate and silly, conversational and focused. She is stubborn and tantrums often, and I see in her Zaley's independence and wired intensity. Which makes me both proud and scared for my sanity.

imageI was also scared a year ago because no one offered me an appointment like we had on Friday. Last fall, when we got back from Alaska, we had no comprehensive exam, we had no answers. I know that the mystery of every child is that you don't know who they're going to be. But when you receive a diagnosis as potentially severe as CMV, that shiny, birth-given mystery is largely mattefied by fear. In dark moments, instead of thinking, who will my child be when they grow up, I sometimes thought, how will other people see my child as she grows up? Will she have a walker, will she be made fun of for her hearing devices, will she speak differently, will she be considered inferior because she isn't a normal size, will her face have a slant of otherness to it that gives away the fact that a virus got stuck in her brain stem and scrambled stuff up?

imageSo far, people are never unkind about Anna's implants or her smallness, but I often forget that what we do is different. The last time we were on an airplane, I was reattaching her cochlear implants for the 20th time that day, and when I looked over, I could see that the whole row was craning forward to see what I was doing. I smiled, they smiled; these smiles are both a bridge and a divide.

We are so different now from so many people we love. It is tempting to say: look, you don't understand how busy we are, how many appointments we must fit into a week, how frustrating and mood-altering it can be for the mother who sometimes thinks of all the picnics she could take with her kids if it weren't for all the therapies. But to do so--to highlight for others how Anna has made our lives different than the norm--would be to burn the bridge of interest others have in Anna that holds us up so we can still feel normal, or better than normal: Anna has changed the way Luke and I love each other, and it has maybe made our family even more loved than we were before. I think this because when I think of our friends who have had atypical children, for whatever reason, my love of them has inflated a little, which I picture happening inside me, like my heart is puffing up a small red balloon. Thank you, to all our friends and family, who never make us feel different, even if our lives are different now that we have Anna. And even if, on my bad days, I am poorly inclined to wear our differences like a medal.

imageAnna's developmental appointment last week was attended by two doctors--both mothers of young children! yes!--who basically played with her for four hours, "slipping tests" into more activities and toys than Anna had ever seen. She did things I didn't know she could do: drew lines on a sheet of paper, pointed with her index finger at an item as a request, made the "shh" sound with her finger to her mouth (or, sometimes, mashed against her cheek), and then another 20 things I've already proudly witnessed. When they tallied up her points on the Mullen Scales of Early Learning Test, she scored:

Visual Reception: 18 months

Fine Motor: 16 months

Receptive Language: 13 months

Expressive Language: 14 months

Gross Motor: 11 months

I spend so much time in thought and over-thought that to have something as concrete and objective as someone else's "scores" for Anna was deeply comforting--even the areas where Anna scored lower than her age range. I don't mean to reduce her to measurements, nor do I think that a "score" is an accurate, even close to holistic assessment of any child. I like the numbers because I know that in each of those numbers is hope and hard work and for sure, heaps of mystery. Again and again, our CHIP provider and her doctors have said, we really weren't expecting her to do this well on her language scores since she's deaf. I did. I expected all those numbers about as they came out. But in the hours when Anna is tired or zoned out, there is always the part of me that skips too far ahead, and wonders if she'll do ok in school, if she'll be frustrated by the power of her will, if CMV has had some hold on her that is invisible and still waiting to reveal itself as the things she cannot do.

Will this be different than raising any child who cannot achieve what they desire? I'm not sure. I think so. I think we will always have blame, or at least suspicion that her condition is responsible for specific challenges. Especially when it comes to her mobility.

imageAnna's gross motor skills are definitely the most grievous part of watching her overcome this disease from birth. I can tell she badly wants to stand up without help--she'll begin in a squatting position, hinge half-way upwards, then fall back down onto her butt before folding completely over her straightened legs with her head on the floor between them, sometimes silently, sometimes glancing up at me sideways and yelling, like, come on! what the hell? The good thing is the doctors we saw at Children's did reflex tests on her legs and feet and they communicate immediately to the brain, which came to me with a relief as strong as the sensation I always have on my first lap of swimming. Her muscle tone is simply too low. She'll get there, I know, but you can't do weight lifting with a baby. She must do the work with her own body. Her suffering is inside her, and her healing is, too.

imageSome days, it really is difficult to watch my child struggle with something that isn't genetic, especially when her friends are running across the yard to catch siblings, already labeling things in two-word series. In these comparisons, the old virus rears its ugly head in the story again, the preventable piece of her narrative, the one whose absence occurs to me in flashes of whom Anna would be. But I cannot picture her unlike herself--that child is like a picture almost faded to white, or a nighttime dream, nearly forgotten. Instead, I get charts and tests and more information on my child than most parents will ever receive. I keep them in a file on my desk, the numbers highlighted, my little prize fighter sneaking up the stairs behind me before I even hear her.

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.