Because I’m working on a book about Anna, deafness, and congenital CMV called THE SILENCE VIRUS. I am represented by the William Morris agency and am available to speak at medical conferences and parent groups. Email me at thesilencevirus at gmail dot com.
Since I last wrote, Anna walked across the room. She started saying head, eye, open, all done, bye bye, see?, apple, shoes, and, sometimes, it sounds like she says, oh shit when she takes something into her hands. We are seeing that she's more in-tune than her language delay often implies. You have to watch closely to see that she's paying attention. If you give her grapes cut in half with the in-tact, globular side facing up (to trick her), she turns it over to see if it's been cut or not, and finding that it has been, she throws it across the room. She registers humor immediately, breaking into a four-tooth grin, or pushing her lips up to her nose to make her signature duck face. She sings when music comes on, she knows the verses of "Open, Shut Them," and "Round and Round the Garden", and she puts her hands in the right positions for all the finger-plays we sing.
We are finding that even though we aren't giving Anna much sign language, she picks it up immediately. I rarely sign to her. Luke mostly does it because he gets a kick out of it. Her best signs are dad with a thumb stuck to her forehead and "DAH!!" accompanying it, and chicken, an index finger pushing on the opposite palm, while emitting a "buck-buck-buck." For fish, she swims her little fingers upwards, pressed together, like a fin pushing through water. We are so proud of her, and I love to watch sign language take its own shape in her hands. But there is also always ambivalence here, and some secrecy.
We know that with a deficit in speech, now is the time to give her all the tools to learn that hearing is connected to meaning is connected to making words. As opposed to sign language, which is outwardly very demonstrative, much more simple to understand, and can be learned fluently with work and time at any point in one's development, spoken language is harder than the average hearing person ever considers. How many individual sounds, how many intonations, how many mouth shapes, how many implications are bundled into the single said-aloud word! As I am teaching Zaley how to read, I see how much needs explaining: that letters together make words, that the words on the paper are the same words she already uses, that letters take on different sounds depending on their neighbors. It seems the higher-level concepts do not give us the most trouble (the other night, Zaley used the word literally in context), it is the fundamentals, the elemental structures of the way we speak and interact that, when shifted, created the most noticeable shockwaves in our lives.
In my head, I still play the "what if Anna was hearing game." Not because I wish she was, but because it is the first way I learned how to make parenting choices. I asked our kind and accomodating auditory-verbal therapist, Joanna, who used to teach sign language in the home, isn't withholding sign language from your deaf child like taking all the books away from an avid reader and forcing them to do math?
No is the answer. No is the answer because modalities of language are different than learning disabilities. This is the chance for me to close the gap that might mean a life-long learning disability for Anna in speech and in listening. There is a window for listening and spoken language that opens early and closes early. I picture this like my favorite times of day: pre-dawn, when the quiet blackness of the house transforms it into a different place entirely; and pre-dusk, just as the world is turning blue with tinges of light. This is how I imagine Anna's years right now. Repeated words coming out our chimney and windows, like the streaks of colors the fairies in Sleeping Beauty shoot from their wands. (Sorry you were born to a language junky and literature major, Anna!) There go our words: Dog! Up! Thank you! Here you go! Weeee! No, no!Yes please!
But you can't see our words because we are saying them, not signing them. Having a deaf child and not giving her sign language is still the least digestible peculiarity of having Anna. Turning away from my own child's strength--and an established culture, the Deaf culture--to make her more a part of my world, the world of privilege and power, feels almost like an abuse of privilege and power. Because Anna is my child and because her successes seem like harder-earned victories than a typical child's achievements, it is still--a year-and-a-half into this story--with resignation, not certainty, that I curb my impulse to teach her all the signs I love: octopus, caterpillar, coffee, love, sick, learn. These are a tiny sliver of the signs that portray more than spoken words do. You can see them (octopus tentacles wiggling under a round head), they move (slinking up the arm), they act (the grinding, spiral motion of an old-school coffee maker), they mimic (a kiss, a pressure on the head and the core, a drawing up of wisdom into the brain), they are as close as the body can get to a tangible experience as going through the experiene itself.
I do believe that waiting to teach Anna ASL till she can speak will be better for her than trying to teach her a language we are not, ourselves, fluent in. I do believe in our spoken language therapists, in the studies that show deaf children achieving higher gains in mainstream schools--where they are held to the same linguistic standards as hearing children, which means, surrounding them with a complex, fluent language from the very beginning.
But when a deaf college student sat on my couch last week, signing fluently, speaking perfectly, showing me the same cochlear implants as my Anna wears, when she explained how her parents, grandma, and sister learned sign language right away and it was used all the time in their home, I knew that the home I've always wanted to build for my children is not one with pretty linens and framed art--though I love buying both--but one furnished with multiple languages.
In an essay for The New Yorker, Jumpa Lahiri writes, "Every language belongs to a specific place. It can migrate, it can spread." In her essay, she's talking about spoken language--Italian, specifically--but it's the way I think about sign language, too.
Without a country, some might say sign language has no location. But I think it is located in deaf children. The director of the home intervention program for deaf and blind children in Colorado told me not to feel too guilty if we don't have time to pick up signing--by the time Anna reaches school-age, 90% of her deaf peers won't be using sign language (this is because 90% of them are implanted, and these children often come from families where sign language isn't taught. I don't blame these families. Who has time to learn a whole new language? Not everyone. I am speaking out of desire, not persuasive motives here). This statistic saddens me, as does the languishing of any established language.
Lahiri writes about how she has been living in "linguistic exile," in a place where her language is foreign (she lives in America and her mother tongue is Bengali). She writes: "It is an absence that creates a distance within you." I believe a total absence of sign language in our lives would eventually distance me from Anna.
It doesn't mean I want to teach it to her right now, but it does mean I want to know it. And that's the hardest part: when I want something, I don't save for it, or plan for it, I want it right now, and I tend to go and get it. Same goes for Luke. But not with Anna. Ah, child, how much you have taught us, continue to teach us.
Later in her essay, Lahiri writes: "As for Italian, the exile has a different aspect. Almost as soon as we met, Italian and I were separated. My yearning seems foolish. And yet I feel it." Which is a perfect way for us mothers of deaf children to explain to our therapists, who might know best--who likely do know best--that you cannot silence the callings of the heart, nor can you choose the language of those callings. In my heart is a hand opening and closing. It is a beckoning.
All the photos in this post were taken by my friend and fabulous photographer, Ali V.
Last 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? I 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.
A 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.
She 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.
I 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?
So 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.
Anna'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.
Anna'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.
Some 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.
Anna'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?" Here, 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.
It 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?
Despite 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.
Add 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. I 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.
We 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.
Today, 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.