Advocating for Anna, not Against Her

FullSizeRender(18)A few weeks ago, I saw a Maternal Fetal Medicine specialist to have my CMV titers checked. Basically, if I get pregnant again and my recent antibodies to CMV are too high, there's a minute chance I could have another baby with symptomatic CMV. It was a weird appointment. First of all, because we would willingly have another baby with CMV if that happened to happen. Secondly, a videographer from The Denver Post had come with me to film the appointment (and this was a mama of little girls who ended up being so lovely and attentive, I wanted to be insta-friends with her). Thirdly, because I accidentally hijacked the appointment and made it more a crusade for CMV awareness, and less a discussion of my titers (which are low enough to be considered "safe"). And finally, because I found myself in the familiar position of advocating against the way my daughter already is.

FullSizeRender(11)Every time I talk to people about CMV, I feel the tension of not wanting CMV to exist, and yet, not wishing Anna to be anyone other than exactly, specifically, unchangeably Anna. Would I take away from Anna the gift of her from-birth access to silence? No. Would I take away her deafness? No. (Which I've written about before.) But would I subtract from Anna the other things that CMV brought to her body, like the burden that is her inability to balance? Probably. Would I love to see her run across the yard like Mia's daughter across the street, who is the same age, who is fast and unencumbered, who despite my best efforts is still a daily reminder of how much easier Anna's achievements could have come?

Yes, I love Anna's differences, BUT YES I want to see Anna run.

Because Anna is advancing and lucky, I should also stop here and acknowledge the mother who, this week, strapped on roller skates and went to the skate park to push around her son who has CMV and is wheelchair-bound for life. I should acknowledge this mother who will never get to see him run, who hates CMV possibly more than me, who would maybe take everything away from him that CMV has caused. Her son presumably suffers more than Anna. His mother likely suffers more than I do. FullSizeRender(15)But within this pause to consider that mother, I can't help but think, also, of the me before I had Anna, who seemed to suffer just as much as the me who has Anna. Whether we have immobile kids or deaf kids or no kids, we all come right up against the heat of suffering for reasons that aren't always as outward as disability. For me, suffering has also materialized--and just as vividly--in the wrappings of boredom, displacement, unrest, and mothering. If comparison of possessions and persons is the thief of joy, as Theodore Roosevelt said, then comparison of what we each endure is the thief of compassion.

CMV, contrary to the ongoing sufferings of the human condition, feels like a more purposeful exposure to the ways I have never lived: without the for-granted functions of a healthy body, without sound, without an automatic language. I know; I don't have CMV. But because Anna is a baby and babies aren't aware of any of the above, I believe that mothers, in a special way, experience the lives of their very young. Do I wish CMV didn't exist? Yes. Do I wish it had never come into my life? Not sure. We don't always get to find the thing we fight for; sometimes that thing finds us. Right now, CMV is that thing for me.

IMG_4711CMV has taken up great space in my head, space I sometimes wish I could reclaim and devote to better things, like praying, or carpentry, or taking up ukelele! Late at night, I research recent funding of CMV studies. I wake up mentally revisiting my pregnancy with Anna--when I could have prevented CMV. I spend hours still puzzling over CMV's symptoms--which are gifts, which are grievances. A friend of ours whose daughter has congenital CMV and is now in college told me that her daughter's greatest struggle has not been her profound deafness, but her motor delays--that not until she was an adolescent did she realize her left hand was having trouble keeping up with her right on the piano, that she could not swim or dance or ride a horse because her left leg always lagged behind.

How can the total loss of hearing make less difference than the partial loss of motor control?

The answer isn't as simple as cochlear implants, though our friend's daughter has two of those, like Anna. The answer, in part, is that deafness itself is of great curiosity to the hearing majority, and often the things we are curious about are such because they have a distinctive and unreachable beauty within them. And, very importantly, deafness has a community. Gross and fine motor delays, on the other hand, do not have a community. And neither does congenital CMV. It is one of the heaviest burdens of having a child born with this disease: we are alone. And even more frustratingly, we are many.

FullSizeRender(17)When we first found out about Anna's CMV, the P.A. at Children's Hospital here said another mom was putting together a support group for parents of kids with CMV. Then that mom moved away. I have spent the last year waiting and being angry that no one else started a group. So committed to my bitterness was I that it didn't even occur to me until last week that I should just start one. I realized I should start one because as soon as The Denver Post piece got published, a number of people found me on Facebook and started asking medical questions, personal questions, desperate questions that no one had yet answered for them.

FullSizeRender(13)I just turned my phone off after consoling a terrified mother of a one-week old in Tennessee who has congenital CMV. She asked me if I'm part of a support group, and I didn't want to tell her the truth: that there isn't one. I remember Luke saying to me, when Anna was diagnosed, this was possibly the worst diagnosis--not for Anna, but for a person like me, who is fed not only by knowledge itself, but in the belief that knowledge exists, in experts and in literature--that it is available and abundant and ready at any moment for the plucking, and that it can be saving.

CMV is a special kind of thief. Not only can it take away entire senses, but it has also done so by convincing the world that it doesn't exist. So, this is what I advocate for: that we use its name so people will know of it, that we prevent it (which is wholly possible), that we continue to tell the story of our children who are beating it.

FullSizeRender(9)At Anna's Early Intervention meeting, we set goals for her to reach by this fall. We don't hold her to them, we hope for them. We nudge her from behind, a palm steadying the back or a hand reattaching an implant, pushing gently in the direction of her natural trajectory. By next fall, we agreed:

  1. Anna will walk all the way around the block.
  2. Anna will sing a song.
  3. Anna will run.

 

 

All the Same Questions

nix_holiday_2016-18In case you missed it, my last post didn't send out an email to those of you who are subscribing! You can read that one first, if you like. nix_holiday_2016-58Since 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.

nix_holiday_2016-23We 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?

nix_holiday_2016-7No 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.

nix_holiday_2016-77I 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.

nix_holiday_2016-67In 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.

nix_holiday_2016-50Later 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.

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.

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

IMG_8934 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.

On the Eve of Surgery

Anna's surgery is tomorrow morning at 7:30 AM. Today, I am doing as little mental preparing and as much logistical preparing as possible. FullSizeRender-41If I think too much about the puffy bag doing the work of her lungs, I can feel a downward rush of panic from my shoulders to my pelvis. Instead, I clipped each of Anna's finger and toenails. I shampooed and conditioned her hair. I massaged behind each ear where the surgeon will slide a knife before he removes part of her mastoid bone and inserts a magnet and a long strip of sensors. I looked at her head one last time with its sudsy hair and lack of devices. Like every mother gazing at their child of 10 months in a moment of peace, part of me doesn't want to change her, ever. She is always alert and very still in the tub, all the whooshes of water and new smells and small bubbles. This morning, she smells like a Creamsicle. FullSizeRender-44In the hospital bag, I will pack a zipper onesie that will slip on easily to avoid the large bandage that will be circling her head. A soft blanket. A bottle she will not take. A magazine I will not be able to read. Really, there is no preparing to do. I make lists and preparations that don't need to be made in order to feel prepared. We will drive to the hospital before the sun comes up and then we will trust, and all the while we'll wait.

FullSizeRender-42I've been thinking about it, and I'm not sure what other operation could be as life-changing as cochlear implant surgery. This might seem like an exaggeration, but there is life-saving and life-altering, and I can't think of something more momentous happening to a child. I know that surgeries like heart transplants are longer and more involved, but the heart that was once beating continues to beat. The body does not feel the addition of a component that never was. With cochlear implants, the brain that never processed sound will "hear" it in one split-second, pathway-carving, initial moment when we sit in our audiologist's office 9 days after surgery. We are taking Anna's existence and adding a completely novel dimension--an entire sense--to it.

FullSizeRender-43I play this game of artificially and briefly removing my senses. Sometimes I keep my eyes closed and open them in front of something beautiful--one of my girls' wide-eyed faces or the recently blooming trees. Or, sometimes I try not to touch anything as I'm walking through the house. I try to disengage my feet from my body so I can't even feel the floor. I pass by the framed pictures and the elk antlers and the leather couch and the fuzzy pillows. Then I touch something--Zaley's hair, Anna's pinky toe, a spout of running water. I imagine that this may be what Anna will go through even if she doesn't remember it. I cannot resist the preemptory joy I take in knowing that what was once unknown to her will be irrevocably known. Voices, verses, birdsong, wind. Noise makers, sizzling, shouting, laughter.

IMG_8475I can't wait to read to her. To whisper to her. To see her when she realizes what Zaley's been doing with her mouth all this time. I wonder if Anna will have some subconscious recollection of sound from being in utero. I wonder if she will often prefer silence. I wonder if she'll be able to more readily dip into an innate pool of peace than those of us born from and into noise. Will she want to go to school with her sister or with the Deaf? Will she ever experience music like I do? I know that this surgery will change the choices and the identity she makes for herself for the rest of her life. My anxiety changes its weight when it is loaded with responsibility. Still, it will be done, and I am excited. I want to witness her hear her own giggle. I'm ready for surgery, for recovery, for her to hear her dad sing.

 

In Which Anxiety Gets Eased by a Doctor and an Older Daughter

FullSizeRender-9Even though I'm taking so much joy in Anna's milestones (she can roll both ways, she eats mushy cereal by lurching forward with her mouth open like a frog, she laughs till she squeals when Zaley dances in front of her), my anxiety about cmv continues to increase the older she gets. Since cmv can have progressive symptoms, I feel I am keeping constant vigil: is she not sleeping because she has prolonged reflexes that jerk her awake? Does she need more physical therapy to learn how to crawl? Do her eyes still look ok behind the navy blue irises that are sliding more towards an Easter egg green? Most of all, I find myself circling back to the one question that has no answer--not for Anna, not for anyone really, and yet, I want to know anyways: will Anna be able to have a normal life? IMG_8183Most of Anna's 9-month-old friends are pulling themselves up on furniture, crawling out of rooms. I hold her smiling in my lap, the soles of her feet pushing together, her legs concerningly rigid, her eyes always lit with a sly omniscience and what looks to me like a cognitive sageness older than her age. People offer their comforts: "My cousin's baby didn't walk till she was a year-and-a-half!" or "My second baby didn't get teeth till she was 14 months!" I appreciate the attempts at surrounding me with similarities; the reminder of the unimportance of time relative to accomplishments does help. Plus, I do feel that Anna is like every other baby, just more of a miracle, more of a secret.

At the end of the day, though, like right now--when our house is as silent as Anna's every moment--Anna is still the only baby I know who has cmv. She will not crawl out of the room. She will not be anywhere close to walking when she's 1. Her weight will likely never be on The Chart. She is not just late; she is delayed (as in, passively effected; something other than her is postponing her physical arrivals). I am at peace with Anna's timing, with her thoughtful progress. But I have never been at peace with the cmv.

It's almost like I have compartmentalized her into two things: almost always to me, she is this wonderful, deaf, joyful child; and, yet sometimes, I think of her body as a vessel for a disease whose beginnings are linked to me and whose repercussions are both devastating and responsible for the creation of her as a full person. If I am infatuated with her just as she is, how can I not be at peace with the catalyst for the things that set her apart from every child I know?

This is a dichotomy I'll probably never be able to mend.

IMG_8209I hate cmv because I hate how much I can't know about it. I'm not proud of it, but ever since Anna was diagnosed, I have felt that humanity owes me answers. My entitlement has inched upwards on a monthly basis with most of our providers. Why didn't Children's Hospital do anything besides prescribe an anti-viral? Why didn't anyone tell me if her surgery will be inpatient or outpatient? Why can't anyone tell me anything about cmv besides that we'll just have to give Anna time to see how it has effected her system? What I have realized is that fiendishly searching for answers makes me super anxious and it makes me forget that God exists and it makes me forget that a good life can be spent bathed in questions.

{Sidenote: the anxiety issues stem from other sources, as well:

1. On any given day before any given appointment that starts at a very specific time, Zaley wants to know repeatedly and at increasing volume if she can put on her ballet clothes before we leave. Putting on her tights gives us both high blood pressure.

2. Before we walk out the door, I have to change Anna and nurse her and find her hearing aids and her hearing aid case and her hearing aid headband and the little pin that opens her hearing aids so they aren't buzzing in my pocket when she rips them off for the 100th time in a morning.

3. I have to find the time and ingredients to make and drink a smoothie with phosphytidal choline in it, which a naturopath prescribed to repair Anna's cell membranes and improve neurological function.

4. Did I remember to drink my lemon-balm tea--natural anti-viral and usherer-in of calmness, also prescribed by the naturopath who asks if I always feel rushed--at least three times yesterday?

5. Did I drop Anna's probiotics and Vitamin D onto her spoon? Or, more like, did I feed her?

6. Did I take my natural anxiety pill called SerenX that does just about exactly nothing?}

IMG_8238Something happened last week, though. I finally had a conversation with a man I've been waiting to talk to for nine months. A doctor of Infectious Disease at Children's Hospital, Dr. Jim Todd was practicing when my mom was an oncology nurse there over 30 years ago. As I sat in the back of Luke's truck with one hand dancing for Anna and the other holding the phone up to my ear, he told me that we should enroll Anna in a neurodevelopment clinic so that we can see if there are any indicators of the effects of cmv in her system (besides hearing loss), and so they can track her progress on an ongoing basis.

A NEURODEVELOPMENTAL CLINIC? Why didn't I know about this before? I wanted to hug Dr. Jim Todd, but instead I just kept agreeing with him and looking at Anna and pushing down on the little tears pooling in the corners of my eyes. He said if it was his granddaughter, he would insist on enrolling her in the clinic, and I loved him extra for that--for making me not feel like the crazy woman I maybe sometimes am.

Until that phone call, I had been relying on very infrequent internet searches to pinpoint whether or not some of Anna's symptoms might be related to cmv. (Which really does seem ridiculous--the mother of a child with a chronic disease should not be reliant on mom forums for answers. She should be led by a medical team). Dr. Todd told me that when his wife had cancer, he felt like me: "All these decisions are out of my range." He told me that cmv can be like cancer: you don't know when it's going to reappear, when--like shingles recurring after chicken pox--cmv's afflictions could resurge. (Which made my arms and legs tingle, momentarily, with that cold, Anna-as-newborn worry). He told me we have done all the right things, and that he wished we had been made more aware of neurodevelopment from the beginning. Not only did he tell me he had coached Luke's cousin's soccer team about 30 years ago in Cranmer Park (Luke's uncle happens to be a renowned orthopedic surgeon, so he had connected the last-name dots), he also said: "This is my cell phone. You call me if you don't feel you're getting the care you need."

That's the first time someone has said it: despite how many specialists Anna sees and how amazing we believe each of them to be, I haven't felt Anna has been getting the care she needs. And that's because none of her providers is an expert or even very familiar with cmv.

Doing a neurodevelopment clinic will mean more tests and electrodes and time spent in doctors' offices and hospitals. But if it means that we can help identify Anna's strengths and possible differences--if it means concrete things like helping Anna avoid wearing leg braces when she does walk because she has severely pronating feet--I want all the information now that I believe I need.

IMG_8285Zaley does, too. She wants to know how Anna's cochlear implants will work. She's so excited about them, for the last week she's been carrying a plastic set of CI's around that our AVT therapist, Nancy, gave her. She's helping me pick out the color of Anna's Skin-Its--colorful covers that will snazz up her plain-old beige devices. Zaley reminds me that at the beginning and the end of everyday, love will swallow up anxiety, even if just briefly. The first thing and the last thing she wants to do every day is kiss her baby Anna.

Readying the Heart

IMG_7385These days, I have to run from everything in order to write. My mom came over this morning and is watching the baby. There is laundry everywhere--on chairs, under chairs, at the top of the stairs, at the bottom of the stairs, in random bags, and erupting from drawers. Zaley is at school handing out Valentines and eating heart-shaped pretzels. I have so much freedom for the next hour, I feel anxious and unfocused, like my heart is going too fast. It is the first morning since Anna was born that I have left the house to write anything. Usually, I fit words in late at night with her rasping beside me. I have to watch my judgments; when I read, I think, surely, this person couldn't have written this/done this/made this while raising young children. But, in fact, people do. In fact, here I am writing. I might look like I don't have kids. People with kids look at me like I look at people who don't seem to have kids. I have a leather bag with me this morning instead of a diaper bag. My hair is washed. I am not whisper-shouting at my daughter, like the woman in front of me just was at the coffee shop, "You cannot talk that loud in here!!!"

I had to leave the coffee shop. It is my favorite coffee shop: a bookstore and a bar and a coffeeshop in one. There are beautiful books tented open on shelves and glossy Dewey Decimel cabinets used as half-walls. It is so lovely in there, with Louis Armstrong crooning above me from a ceiling of rafters and steel, and pigtailed toddlers peering in at pink cookies, and a smiling older man settling in with his tea. I was there when they opened and gone five minutes later. Annie Dillard explains it: "Appealing workplaces are to be avoided. One wants a room with no view, so imagination can meet memory in the dark."

I find my memory is most often meeting my imagination in the place before I had kids. That mysterious me, only half--or less--of who I am now. One hundred times the freedom, but such aimlessness, no use for space or freedom. Better body, less purpose. My friend Lizzy put it so profoundly--the feeling you have as a mother that makes everything slice you open to a deeper degree than if you were just feeling it for yourself. She said that having her daughter made her feel like "the wind wasn't just the wind anymore."

Now I am at the old library down the street. It is not as unappealing as Annie Dillard would prescribe, but less boastful in its presentations than the BookBar. There are peeling French windows here and historical books laid out on a bench. Out the window, winter still hangs over the sunny field, the trees pushing against the wind. The pond is still ice. The windows rattle slightly when the air changes its force and direction.

But this week feels like a moving forward, which I haven't felt for weeks after so many illnesses in our house and an overnight stay in the hospital with Anna and big snows and chickens for whom we had to shovel a path--a one-foot-wide muddy trail from their wooden house up to our steps where we feed them corn in ceramic cereal bowls.

IMG_7508The last couple of months I have tried to ignore a stuckness, but now that we finally have a surgery date for Anna, I can see that spring will arrive, as it always does, no matter how much an unlikelihood this always seems in January and some of February and even into March. We scheduled her cochlear implant surgery for April 20. It should take 2 and a half hours and they'll do both sides at once. Before that, we will go to the desert where we went when I was pregnant with her where the mountains are made of brown dust and the mornings are hot and the wind pulls across the pool in straight white lines. Memory and imagination, that old me and this new me, that bump in my swimsuit and Anna now, and Anna now and Anna future, and her deafness still deafness, but a deafness opened up.

FullSizeRender-3I want this surgery behind us so I can stop imagining life after it and just live it. I want the surgery over with so I don't have to picture the doctor coming out to tell us if it was successful. I want to know what Anna will be like when we activate the devices ten days later and her brain is ignited by everything I hear but forget to notice or name: the geese honking outside as they bisect the window and settle onto the honey-colored grass, the door clicking shut and the kids scuttling in, the man behind me talking about a conspiracy, the copy machine scooting sideways and spitting out paper.

I am so excited for Anna to hear all of this, but so scared still that we are puncturing the peace of her world. I know that I will always have more of a desire to understand her way of being than I can ever possibly fulfill. This is probably one of the hardest and most beautiful things about having a child who is different.

It is Lent now and it feels like it. There is an extra layer of heavy over everything, even though I can also feel the blood-pump of momentum this time of year. It is a windy day, but the wind is not just the wind. It has a pitch I never noticed till Anna. The breeze comes and goes like a revelation just out of reach. There is a prayer running through me, the morning prayer from yesterday's hours, Psalm 57:

"My heart is ready, O God, my heart is ready."

The Great Language Debate

FullSizeRender-1I recently read that the stress levels of mothers to kids with special needs are equivalent to the stress levels of combat soldiers. Some days, this does feel like a battle. Not so much because I feel downtrodden physically, but because I feel caught between two warring sides: in the deaf world, the spoken language team versus the sign language team. Obviously, because we are getting cochlear implants for Anna, our goal is for her to speak and to hear speech. Easier said than done. Already, we spend multiple hours a week preparing her for the hearing world. At our auditory verbal therapist's office, we practice the ways we need to be emitting animal sounds in order for Anna to learn them in a more intentional way than a hearing child would. The bunny says "hop hop hop" so Anna is attuned to the three-part building block of a sentence. The boat says "puh-puh-puh" so that eventually, when Anna is in the tub, she learns to get her lips around the "p" sound by blowing a boat across the bath.

But does she hear anything? This is the question that I ask myself a hundred times a day. Nancy, our AV therapist, swears she does. She sits across the table from Anna, lovingly scrutinizing her vision, the slightest turn of her neck. She holds Anna, studying the silence of her eyes as I call her name loudly and lowly behind her back. It is rare for babies to have Anna's level of hearing loss. Not only is she profoundly deaf, she is at the farthest reaches of profound.

Last week, I sat in the sound booth at Children's Hospital with Anna in my lap and my ears plugged with orange foam as our audiologist pumped "uh oh's" into the room along with clicking noises and bells jacked up to the decibel level of a garbage disposal. But because Anna is a baby and because babies' eyes and noises and movements are random, no one knows if she is hearing anything. Our audiologist's eyebrows go up behind the glass window? Do I think she heard something? Maybe! Or, that time? Maybe not. My subjective expertise sometimes feels like a guessing game. Sometimes it feels like a burden.

Part of me thinks that we are being fooled. But even that part of me is divided. We are either being fooled by:

a) The professionals who tell us Anna is hearing (maybe just so we keep up hope and keep talking to her)

OR

b) Anna herself (maybe she can hear more than she's letting us know)

One time, Nancy rang a tamborine of jingle bells behind the baby's head and Anna went totally still. I stopped all movement in my hands. Anna's eyes looked left then right. I know she heard something that one time. But I don't know about all the others--all the times we have said "moooooo" or "Annnnnnna" or "Mamaaaaa" or "Daddaaaaa."

I suppose it doesn't matter. If she were hearing us, even just a little bit, would it change anything? She is still deaf enough to need cochlear implants. She is still deaf enough that I am up in the middle of the night thinking about her fitting in at school one day. I guess if I knew she were hearing something, she would seem just a little bit less removed from me.

I know that even if she hears nothing right now, a large part of our AV therapy is preparing us for the ways we will have to be intentional with our sounds once Anna's cochlear implants are activated--which, if insurance allows us a 10-month surgery date, is just three months away. Instead of going upstairs to get something, we say "up Up UP we are going UP!" Instead of stirring the soup, we say "whoosh Whoosh WHOOSH, hear us STIRRING the soup?" Some days, this is exhausting. Some days, I wish I were more of a thespian or a hockey announcer.

Because we can't really know if she's hearing anything, or something, or lots of things through her hearing aids, she's supposed to wear them "all waking hours." Have you ever seen a seven-month old who is aware that something is jammed in both of her ears? Something that is colorful and removable and chewy? She can get those suckers out within the first second I put them in. This is what every mother of a child with hearing loss is dealing with.

Every mother except for the ones that decide not to use technology to change the way their child's brain develops.

Enter: the sign language team. Without hearing aids and without cochlear implants, a child obviously needs a language. The Rocky Mountain Deaf School here teaches almost all of their classes from K-to-12 in American Sign Language. Kids can have cochlear implants at RMDS, but they're expected to use ASL as their primary language and speech as their second. The school (constructed using a 13 million dollar grant from the Colorado Department of Education in 2014) is amazing--with hallways built three times as wide as a normal school so students can sign to each other side-by-side on the way to class. Instead of installing typical floors that don't bend, the hallways in the deaf school are built bouncy so you can feel a person approaching from behind.

FullSizeRender-38We participate in a monthly program led by the deaf school. Sometimes it's at the school. Other times it's at museums or organizations around Denver, with activities tailored around deaf children. Seeing the way people adjust their activities for these tiny people with tiny hearing aids always brings me to tears. We have met deaf adults who possess a happy kind of confidence and eager senses of humor and who produce this warm bubble of welcoming despite the fact that they can neither hear us nor can we understand their language. We have met parents in this group whose kids have cochlear implants and parents who are deaf and have deaf children who will not have cochlear implants because they already live in the Deaf world. I believe that the Deaf world would be a beautiful place to live. A place of of sensory sensitivity. A place of connectedness and community.

But I don't live there and I never will. I want Anna to have the choice to be in that group when she's older and not wearing her hardware. My sister-in-law, Annie, put well what I feel about not teaching Anna sign language: "Wouldn't you feel vulnerable if, when someone took your device off, you had no way of communicating?"

But Nancy put it well, too: "You have to think about your intentions. You have to think about the way her brain is developing."

So I started thinking about intentions. My intention is to learn sign language so that I can speak to people I admire in this new world we find ourselves in. My intention is to give Anna the option to speak with her hands or with her voice. My intention is fully based on my preferences and my preferences are based on loving language and appreciating well-roundedness and avoiding exclusion at all costs. My preferences have nothing to do with research or brain development and Nancy pretty much wrote the national and international guidelines on getting deaf children to speak. Our audiologist said of all the AV therapists they work with at the cochlear implant center, Nancy can get kids who were never expected to speak speaking perfectly clearly.

At her office last week, I met a boy named Eli who is 13, whose first language is Russian, who is also fluent in English, who is learning German, who is profoundly deaf. Behind his curly hair are hidden two hair-colored cochlear implants.

This is how I want Anna to be: both like me and more than me.

Nancy says that when you give a visual cue (sign language) to a deaf child, their brain believes that it should gather its information from vision first and foremost. But in a deaf child who will learn to speak through hearing technology, the brain must be taught to develop through sound first. Animal noises have an order of operations: first, you make the "moo," then you show the cow. Simultaneity is not lauded in the auditory verbal world, and for good reason, it seems.

But good reason doesn't usually dictate my decisions. This is where it gets sticky: my heart loves sign language and the solidarity it shows to both Anna and her deaf contemporaries; my head says, give her a voice first and add any language she wants later.

But later feels too late.

I realize I have said "but" about ten times in this post. This is how it is.

FullSizeRender-36If Anna doesn't speak till she's two-and-a-half or three (her language will likely be at least a year behind a hearing child's, since she'll hear a year later), what language do we rely on in the meantime? I don't want to be talking and talking and talking to Anna and not give her the opportunity to respond. Already, she seems to be trying to raise her thumb to her chin to signal "mama." (Which makes me feel like doing a cheerleading split-leap and chanting V-I-C-T-O-R-Y!) And, we all know from the baby books every American, over-achieving mother has read about our hearing children that babies who speak sign language at an early age (hearing or deaf) have a more adept language center in their brain than those who don't.

Add into the mix a close friend of mine's cousin, Natalie, who sat on my couch for three hours last week to talk about sign language and spoken language, who speaks both languages fluently, who has a magnet behind one deaf ear, who is finishing her doctorate work in deaf education, who has one of the most robust resumes I've ever seen in working with deaf children, who is a sign language interpreter and an early interventionist with training in auditory verbal therapy, who says "do all the things" and who also said, when I asked her about the research behind sign language doing detriment to spoken language: "working on my thesis has ruined me on research. You can pretty much find anything you want to believe when you look at 'research.' "

Well, shit.

If you can't look at research, can you look at people's experiences? Maybe one day, you could have, but now it feels like we have access to too many people's experiences for us to gather an adequate portfolio of what we want our own (or our own child's) experience to be like. I know that I can't make a Pinterest board for our future, and I definitely can't make one for the future of my child. Still, I have no prior experience with deafness, so it's hard to resist compiling the stories of others to assist in mapping our own.

In a recent Slate article, a born-deaf woman with cochlear implants talks about how each monthly MAPing process (which is when the audiologist programs the implant's levels according to what the brain is picking up) physically hurts her. When the audiologist changes the program, the deaf brain carves new neural pathways, and this internal etching can be painful. I picture it like a pencil grooving its way into soft tissue. As soon as I picture this, it's as though I feel a sympathy MAPing--a mental etching altering my own pathways, not without pain, as I envision the struggles of my child.

I had to stop reading recent posts on the Parents of Children with Cochlear Implants Facebook page because parents  have been writing in about their cochlear implanted one-year-olds banging their heads on the floor in frustration and/or pain after being activated. There are also countless wonderful videos of deaf kids' activation days, but what you should know, if you've ever watched one of those, is that the journey for the parent of a deaf child is far more complicated than the joy and triumph that are (only sometimes) revealed in that room you enter for a few minutes on YouTube.

FullSizeRender-37I assume I will not have an answer to the language question for many years. In the meantime, we love our auditory verbal therapist, Nancy, and we love our sign language teacher, Lori, and we love our daughter, Zaley, who loves helping with both auditory verbal cues and with sign language, and we love our daughter, Anna, whom we would love to talk to one day. Yes, I fear that implanting Anna will bring pain to her life. But I also know that not preparing her for our world adequately would make her life harder. It is a weight, as a parent, to know that our world must be the world of our children, even if they are different. Even if their world, a world built just for them--bouncy floors and all--might be a better place to live.

Moving Towards Hearing

IMG_6719It is calm here. The OT and the early interventionist have come and gone. The stomach flu has come and gone. Zaley returned to school today. Anna tried some avocado this morning and is sleeping face-down in the sun. As much as I love Christmas, I feel a relief that the holidays are over and we can find our place in the day-to-day, organize our closets, resume appointments, spend mornings seeing how the girls have changed--Zaley's new signs ("I'm excited!" "I see snakes and stars and monkeys!"), Anna's new positions (sitting all the way up without assistance!), the tiny refresher of a new chair behind the new desk where I sit now, thinking of a new year. Which means thinking a lot about last year. I pretty much missed last winter, I was so sick while pregnant with Anna. This time last year, I could barely move from the couch. I pictured Anna as a boy. I never pictured having a child missing one of her senses. "Missing" doesn't feel like the right word. Sometimes "deaf" doesn't either. It's like there's a word here I don't know, a different way of being that does not imply a lacking. I am constantly wondering what it is like to see from Anna's eyes. All these peering faces. All these colors flashing through plastic. What does it feel like to laugh and not hear it? What does she think we are doing with our mouths as we move them slowly and snap our tongues against our teeth?

Like any revelation, Anna was unforeseeable in every way. She still is--even the impending color of her hair a great wonder to me. Some days now, it looks blonde around the edges. The lower layer in the back (the remaining tuft below male-pattern baldness) is a dark black like when she was born. Around her temples, the burnt sienna of both Luke and my grandmas' juice-cylinder curls.

FullSizeRender(6)How I wish my girls could have met my mom's mom and Luke's mom's mom--women who raised five and seven children, women who bore noticeable mirth, who were equal parts gentle and strong, who stayed home because there was no other choice, who did this, who did it so many more times than me with no Swiffers or baby monitors or Bumpos, who suffered the same trials of toddlers, and who discovered the daily astonishments of a small human blooming. I think of how lucky for me to have Anna this year instead of ten or 50 years ago--how now, so much is possible for her. Her diagnosis happened; medication came in the mail; normal speech is possible; hearing is available! When I think of last year, I think of the rawness and grief of discovering her condition, and now, here I sit, much more full of curiosity than misgiving as we push into this next half-year of her life, when our deaf child will be able to hear.

I think about cochlear implants all the time. Their power, the way they will map her brain, the way they will map mine. How we have to make this decision without consent from the person they will most effect. What it will be like in her head, to be opened up by sound. She will discover she has a voice, that I have been singing to her, that our mouths emit something like invisible objects. How do you describe sound without reference to sound? The air dances. Music shifts the blood. A warning comes by way of ascending and descending vibrations. Sound is like an escalator you're on but cannot see. You feel the lift and the drop, something in you moves without moving.

For Anna, it will be almost as it was for me this week: I got an underwater ipod from Luke's mom for Christmas. As I slid into the shallow end and started pushing through the water, the presence of sound in the pool, though I'd pictured it many times, still struck me as entirely foreign. It felt out of place at first. I've been holding off on getting underwater music for some time because I felt it would take away the natural sounds of swimming: the whoosh of the water as it gets heaved towards my feet, the echoes of voices bouncing off the tile walls. But I've been less motivated in the water than I've wanted to be, so I gave in.

Almost immediately, the sound lit up my limbs. I swam differently--faster and with more charge. My shoulders blushed from the pace. I had loaded the ipod with classy choices: Justin Timberlake, Rihanna, Zac Brown. I knew they would make me speed. My head buzzed. I thought of Anna's implants again--the ones that will be fully waterproof and equipped with a remote I can hold so she can hear my voice across the crowded pool as though I'm right against her ear. It will not be her natural state of being, and for this, I will probably always feel the same ambivalence (a little guilt, a little joy) I feel when I press the play button before I swim. I guess I hope that giving her sound will not be dampening the feel of water or the taste of chlorine. That she can choose not to push play when she wants to retreat to her innate, fully sensory silence. That in addition to the mysterious ways we're born, we must seek means to arrive at the nuances that turn our lives. I hope that my exhilaration will eventually be hers.

IMG_6639(1)In Jumpa Lahiri's December 2015 piece in The New Yorker on learning Italian, she writes that at first, her endeavor to learn a new language took place "in exile, in a state of separation." Maybe this is how I first felt about Anna--that her deafness exiled me from understanding her. If I could talk to the 2015 version of myself who was scared about having a deaf child, I would say that Anna's deafness has been one of this year's greatest gifts, for it is through an exile that we find a much more realized and hard-earned arrival at a once-unknown destination. On Wednesdays now, our deaf friend Lori arrives with a book and her fast-moving hands. I make tea. I make the signs for "do you want some tea?" We are learning our daughter's language. This spring, she will learn ours.

Loss of Dog, Gain of Love

FullSizeRender-10 We had to put Quincy down two days ago. Today, Luke is flying to California for work in San Bernardino where there was just a mass shooting. I woke up to a dim house, silent except for the hiss of the heater. I said a quick, barely-prayer for Luke's safety. I slipped Anna's hearing aids in while she watched with folded hands. I keep looking at the spot on the floor where Quincy always slept. There is a rawness here now, an internal sinkhole-type feeling, but I feel kind of sheepish being so sad about Quincy. How can the death of a dog matter in the face of so many more significant deaths?

Quincy started to fail a few days ago at my parents' house where we'd left him so we could have Thanksgiving in the mountains with Luke's family. He had stopped eating and couldn't put weight on his legs when we returned. On Tuesday, my dad and I slid him onto a towel and lifted his 80-pound frame into the back of my car by hoisting him up, hammock-like, from the four corners of fabric. As we were laying him down, my parents' neighbor of 26 years, Mike, came out to give his daily greeting.

Mike is the father of my good friend, Karen, whom I played with every day growing up. We spent eight hours a day at the pool, perfecting back dives and eating my mom's PB&J's. Karen had a big backyard playground and once, while swinging, one of the bolts came out of the beam holding up the swings and nailed me in the eye. Immediately it turned blue and Mike was pissed. "Holy shit, Megs, your parents are going to kill me." Mike had an irreverent mouth but a huge heart. Karen's parents always had a dog, and sometimes, maybe, they paid more attention to their dogs than to us. We ate bowls of brown sugar, unwatched, we took two-hour baths in our swimsuits at Karen's when the pool closed. We weren't neglected at her house, just trusted. Whenever we were playing, there was a dog at our sides, and it's why I liked her house better than mine.

In high school, Karen and I worked at the stables together, mucking out stalls and drinking cups of cheap coffee between shit-shoveling sessions, our cups steaming alongside horses' noses in the cold. We took two horses out on the canal near Kent on Saturday mornings, cantering them through tall, icy grasses like queens living out our childhood dreams. My experiences of animals all go back to my experiences of humans--Karen's family, mostly. Because my mom was allergic to fur, Karen's dogs and our adopted horses were the closest things I had to pets growing up. Their family taught me to experience life deeply through the living things. I remember when their dog Samson died, Karen's mom put her head down on the staircase and openly sobbed. I had never lost a family member. In their house was a waterfall of grief and I could feel its moisture, its pounding, its noticeability.

hickeysAbout a year ago, I started to notice changes in Karen's dad. He called me "young lady" instead of my name. He took my parents' newspaper. Though he still walked their dog, Izzy, four times a day, he had stopped driving. Mike has early onset Alzheimer's, we know now. He does not know who I am anymore. When we loaded Quincy up (unknowingly for the last time, en route to the animal hospital on Tuesday), Mike called out from his driveway: "Y'all have a good day now. Best of luck to you and your family." This is what he has always said, Alzheimer's or not. A genuine wishing of goodness. My friend Beth told me recently the intellect is always in tact. "We don't even know where it lives," she said, which I took to mean: so much is beyond our knowing--even physiologically--that we cannot label missing faculties as entirely gone.

qandz1Which is, maybe, why the concrete loss of a pet is so hard. Quincy, as an ever-present fixture of our home, is gone for real. The gone-ness of his body keeps recurring to me as a revelation, as odd as the disappearance of a couch. Gone, just gone. "Isn't it weird?" I keep asking Luke as I stand in front of the dog bowls, the dog bed, the leash. Quincy was a reminder, as all pets are, of the qualities that waver in us humans. Quincy's happy demeanor reminded me of my dad's reserved acceptance of almost all things. It is no wonder my dad was Quincy's favorite person, that losing Quincy might have hurt my dad most of all. Quincy also forgave Luke and me for years of less petting (thanks to having babies) than we wish we had given him in hindsight. When the vet told me Quincy had a tumor that had likely bled out, given his pendulous belly and pale gums, I asked her how we couldn't have known. I expected that we'd have had a week of cooking Quincy steaks, but the day his legs stopped working was the day he died. "They hide it well till the very end," the vet said. Quincy's dying reminded me how silent the struggle always  is.

Of the essay, Adam Gopnik writes that there must be an apparent object and a buried subject. Of life, this must be the case, too. Our pets are the objects; what it is to be human is the subject. Quincy reminded me of mortality, of the hidden pain of aging, of my dad, of Mike, of the conscious act it takes for us to treat everything well now rather than waiting till later.

Recently, Karen told me she just wants people to remember what her dad was like. I remember. When Karen had an allergic reaction to nuts in their kitchen and got loaded onto an emergency gurney with her tongue all swollen up, I looked over and saw Mike welling up with tears. He jumped rope in their basement and ate Hungry Man dinners while watching the Nightly Business Report. He cussed wickedly during Nebraska games and we giggled. No matter the weather, Mike walked his dog at the time at least four times a day. People all over the Centennial suburbs know Mike by name, he has walked so far with so many dogs and with his confident voice and sharp wave. "How the hell are ya, Megs!"

He and his wife loved each other with a fierce permanence I can still see fighting its way into daily life when I bring my girls down to my parents'  house. There go Mike and Carolyn, walking with each other and their dog in the mornings and there they go, later in the day, the three of them at a clip, and again, as the light is leaving the neighborhood and you can see the green shine of my parents' dining room from the street.

Quincy's dying made me realize that I probably got Quincy 13 years ago because I wanted what I saw in Karen's house, growing up--a being who would procure a long-lasting form of sacrificial love.

Now, Karen spends Saturdays taking care of her dad while her saintly mom takes a break. Karen reads Mike the Wall Street Journal. She makes sure he gets to watch the Nebraska games (once, recently, resorting to a bar for the first half and to my parents' for the second half because her parents' TV had broken). FullSizeRender-9

A lot of generous people offered to learn sign language when we learned Anna was deaf. Karen was the only person who truly did it. Every Tuesday during rush hour starting in July, Karen drove down to the Rocky Mountain School for the Deaf to learn how to speak to my daughter.

Karen, if you are reading, you don't need to tell people what your dad was like. You have his integrity, his kindness. He taught me how to care for a dog. He taught us both something about how to love.

 

Therapy for the Intuition

glenwoodMy intuition has been coming up a lot lately. "Trust your intuition," people say, when I'm not sure how many therapy sessions are too little, too many for Anna. Or, "use your mother's intuition" when Zaley's energy ticks up from wild to barbaric, and I'm unsure whether she's just being 3 or whether she needs a few extra pointers from a professional on self-control. There's such a thing as play therapy that has been suggested for her. There's also narrative therapy, a treating of issues through story. There's also just living through phases, a therapy I'm inclined towards with wary; how does a mother know when to seek (more) professional help for her children? There is the risk of sounding a false Munchausen's-style alarm; there is the risk of seeking no help at all and missing the window of need when it is ajar and asking; there is the risk of over-treating what might be "normal" anyways--a word that pertains less and less to my experience of motherhood. Our lives aren't normal (thank you, Alaska), we have a deaf daughter, and three-year-olds are nuts. FullSizeRender-6Problem being, the intuition is our primary physician. My intuition. And my intuition is not as infallible as people would like to believe. Yes, sometimes, it's right on point. Once, I had a premonition a boyfriend was sleeping with someone else and I went to his bedroom window at dawn and found them. Once Anna was born, as I've written, I knew there was something undiagnosed, or at least, something that unsettled and drew up a darkness of questions. But my intuition is not a Buddha, sitting calm and correct and all-knowing, in my inerds. It's a jumpy and unreliable thing, often prone to superstition and indigestion. Or, an eel: slippery, coiled, rising up to my throat, sometimes in total error, sometimes because I summon an answer no one is giving.

Cmv seems to have no answers. No timeline, no certain symptoms. It erases milestones, eats nerves, leaves absences. We have a P.A. at Children's and an excellent pediatrician, too, but they both defer to each other on the mystery of cmv. Both say that all we should be doing is a six-month antiviral treatment. But I am seeing patterns of stiffness in Anna's legs that bother me. She stretches her feet out, soles together, like she's gripping a stick between them. I don't know if Anna should be doing physical therapy in addition to Anat Baniel Method therapy, if she shoulder receive weekly instead of monthly OT sessions. I finally met another child with cmv last week (whose mother I went to high school with--one of about 100 spooky coincidences since I've had Anna), and she told me her 2-and-a-half year old son did daily physical therapy his first year of life (which, she said, meant she had no life), and he still has such low muscle tone, he's in eating therapy for difficulty swallowing. Anna will not take a bottle. This mother's son walked, victoriously, at 19 months. I dream of Anna bottle-feeding, of her putting one foot in front of the other. I know she will likely be late, by normal standards, but I also know how ecstatic I'll be. Her head is still wobbly, but it's undeniably upright now. When I walk with her facing out, I'm so psyched about her progress, I want to ask strangers if they see how well she's holding up her head.

Still, I'm in the turning-over-stones stage, looking for clues from parents who seem more professional than the many-degreed. The early intervention team of three sits on my rug and asks me how much physical therapy I'd like for Anna to do. I don't know. The ABM practitioners suggest against physical therapy. I don't know. I am a middle-grounder, neither woo-woo, nor convinced by western methods. The eel knots itself, wiggles, looks for warm water.

FullSizeRender-5So we canceled appointments, booked a hotel at Glenwood Hot Springs, and lowered ourselves into long hot pools of natural spring water for the last three days. Zaley couldn't get enough. On the edge of the hot tub, while Luke is in the hotel room with the baby, Zaley is calm. In her deep, hushed storytelling voice, she tells me about her friends at school and creates imaginary scenarios built out of candy and someone named Alabe' and rules ("if you aren't nice, then you don't get to do nice stuff"), which she enforces with a whisper and a close-to-my-face wagging finger. She asks the lifeguard about every chemical and repeats the ecological process to me, how the calcium carbonate and iron (eye-ron, so phonetic of her!) build up on the side of the pool. How the salt in the water heals. She points out a cut that isn't there anymore. She pours water over my outstretched shins. She talks and talks and we return to the pool again and again, three times each day, for these various therapies. While looking at the coating-over mountains, she asks me, "What is the flavor of the snow?"

FullSizeRender-4Anna liked the pools, too. In the warm one, she almost fell asleep tucked under my chin. But since taking her out seemed too traumatic a transition in the cold, I swam with her in the bathroom tub instead, watching her legs untangle themselves, her ears device-less and filling safely with liquid. One day, while both girls were sleeping and Luke stayed in the hotel with them, I snuck away to the lap swimming end of the hot springs. A line of small black birds was swooping dramatically down from the white sky and back up into it. They repeated this rolling wave--like the dashed-line of the U's Zaley is learning to trace--some finding roost in a waving pine tree, and others spiraling out past the edge of the pool towards the frosted slopes. Between laps, I watched the birds in this airborne swimming, so beautifully cutting the air and finding their place in line with each other. I was mesmerized. The day was ending. My arms steamed as I lifted them from the surface. I wished, as I often do, for a life that means never leaving the mountains.

I could have swum for hours out there. Big snowflakes landing on hot water. No pressure on the intuition. The birds like they have been doing this thing forever. I don't know if I could hear anything. I didn't notice. But I love swimming even more now because I bet Anna will be able to do it just like everyone else. You don't need uncompromised legs. And you can't really hear anything when you're underwater.

Those trees, as Wordsworth wrote: "A soft eye-music of slow-waving boughs."

A Morning (and Daughter) Other Than Planned

IMG_5801A half an hour ago, I was supposed to be at the new, four-story Restoration Hardware with Carol and coffees and a sleeping baby on my chest. We were going to be looking at all the beautiful stuff we cannot buy. Instead, I am reading in my bedroom while Anna sleeps on the bed. Because she never naps for long, I figured I'd better give her this exception of uninterrupted time. There is no doctor's appointment or preschool pickup just yet, and so I've been sitting here reading and she has been sleeping and in moments like this, I feel like I must put this in the stress reservoir. Like I could dip into this morning when I feel the panic of the unmanageable. Right now the sun is coming in the French window panes over a baby head that looks like an old man head ruffled by the weight of sleep. I am not on the phone. I am not at the pharmacy. I am not hearing a screaming child. This very minute is good. This is enough. I am watching Anna's back go up and down on the bed with her breathing. I think how different we will be, this deaf child and me. How she will not be naked very often, without her hearing aids and eventually her cochlear implants. Sometimes, when her hearing aids are out, I feel relieved that I can just look at the shape of her, the brush of her hair against the rims of her ears without them. Below that, there is a guilt that she should be wearing them, but for a few minutes a day, when they are not yet in, she is just her, just the baby I always wanted, her face like mine, her eyes the same color as mine, her brain inside being mapped differently every hour of every day than a person who hears. I wonder how this divide will manifest itself in later years: will she and I be closer because of this difference, because our differences entice us to close the distance between them; or will we be unable to see each other clearly because we have never heard each other similarly.

FullSizeRender-28Recently, we are building more of our team. We have a cochlear implant audiologist who says that cochlear implants are her life's work--"the miracle of being able to hear a whisper." We have an occupational therapist who just happens to sing in the Roman choir at our church, who says, after Mia and I are taking the babies off our chests from a morning stroll that "most of the world's problems can be solved between two mothers walking." We finally have new, hopefully-friends, whose children are deaf or hard of hearing, who have invited us over tomorrow to play and build up our sign language and rescue us from the terrible aloneness of a thousand questions in the heart that cannot be answered by medical professionals or the inexperienced. As I watched a child with cochlear implants talk and play and bang on a drum this week, I realized that relief--like the relief I felt at the ophthalmologist's office--has taken on more tingle and power in my body than I ever knew anything could before I had Anna.

This morning, I found out that we can be reimbursed for our $900 monthly copay by a company called Genentech (which produces the anti-viral Anna takes called Valcyte), which our insurance isn't really covering. All I had to do was say Anna's name and birthday, and the man is sending us a card in the mail to reduce each monthly payment by 80%. How was this not made clear to us? How does this even work? He cannot tell me, and I will never understand the idea of health insurance. The Infectious Disease PA at Children's Hospital called me this morning to say how sorry she is that we have had to talk to so many people who understand nothing about cmv every time we make a phone call to explain that this is the only drug Anna needs, that this should be "standard of care." I'm not sure what "standard of care" means, either. I wish that health insurance was as simple as insuring one's health. I wish that more people knew about cmv. I wish I weren't scared around pregnant women that my innocent daughter is a danger to them, and will be for the next two or three years.

IMG_5798I feel a restlessness, a must-be-doing-something urge at all times currently. To be proactive right now means doing anything, really: washing my face, washing my face with soap, putting away the laundry before the piles swallow the desk, reading when I could be sleeping, showing up for the appointments, showing up when Zaley spontaneously and very symmetrically, plans a tea party for me on an ottoman, using all the objects she could reach on a dining room shelf. I painted a room in our house for no other reason than that I like the color. I sang "Itsy Bitsy Spider" to Anna using her feet as fingers so she knows that they exist. I refrained from asking our OT how far behind Anna is in the gross motor department. I propped her up and took pictures and thought, she looks like any other four-month old we know.

FullSizeRender-27In the car now, Anna can see Zaley two seats over, doing her wiggle dance, and Anna perks up and makes amazed sounds at her. I never had a sister. I love that they have each other already, saving each other from boring car rides, from the brief, tear-filled interludes between playing and sleep, from noticing all the differences I can't help but draw when I see the two of them cooing at each other. On the wall above me is a picture of Zaley asleep. Before me is Anna asleep. Their lips are pushed together in the middle. Their eyes are shut tight, a crescent wrinkle half-circling their lower lids. They look like the same daughter. They remind me that sisters are different people anyways, that I will never know how different I am from either of them. That the mysterious flash of sameness in siblings--especially between one with a diagnosis and one without--is another gift I must lower into the pool of anti-anxiety for future use.

It will be noon soon. The leaves out the bedroom window are still green, and where the sun comes through, it is lighting up the tiny white hairs on Anna's ears. I wonder, as she stirs, if there's sound in Anna's dreams.

Humming, Denver, Thunder

I am writing less because there is no time. By the time there is time, Luke and I are so tired, we watch an Impractical Jokers and I sit in bed laughing like an idiot while he snores and the baby rustles beside me as I'm shaking. FullSizeRender-25This week is our "intensive" week for Anna's Anat Baniel therapy, meaning she is seeing a practitioner once, sometimes twice, a day. The one we see in Denver is an exceptionally kind man named Andrew who brings his rescue dog, Mary Jane, to work with him, and who said he'd heard of the Anat Baniel method 15 years ago when he stepped off a fishing boat in Kodiak, Alaska, to take a phone call from his trombonist brother who told him about ABM, and Andrew immediately thought, "that's the most humane thing I've ever heard." Andrew exhibits a gentleness you do not encounter in the everyday. He knows that Anna cannot hear him. But he hums to her. He is big on humming. I know Anna can feel/hear humming because when she's asleep, it wakes her, and if she's sleepy, my humming turns her eyes three-quarters closed.

My mom recently told me that while it was once thought that giraffes do not communicate with each other, it has recently been discovered that they hum to each other at night.

IMG_5629-2I had a half an hour between Anna's first ABM session of the day and her four-month pediatrician visit to go for a walk, so I strapped her to my chest and walked around our old neighborhood. We'd bought our first house in Sunnyside in 2011 right before the housing market boom and before the Highlands/LoHi neighborhoods exploded into their current level of crowded development. Now, there are trendy food court-style restaurants with bleachers overlooking downtown and multiple places with &'s in their names and, where I walked, a place selling custom flannel shirts (custom flannel??) next to a place where you can drink kombucha and make your own bike out of bamboo.

I looked in the windows. I grew confused. Who does these things? Where are the regular bikes, the everyman flannels, the good old, cow town, down-home people? We moved to Wheat Ridge partially to find them (and because my husband's good sense fortunately won over my tendency to partake in whatever the current culture offers us). Now that we have our distance, I see that Denver has sprouted such a culture of luxury, on days like today, I feel like a stranger in my own home city.

Even more than the place itself changing, maybe Denver has changed to me because of Anna. When you have a child who demands not only your every penny but your every hour--in doctors' appointments and in the practical application of auditory-verbal strategies and in the almost constant adjusting of hearing aids, you realize how little shirts and bikes and the most innovative way to top a burger matter. Part of me has become less judgmental because of Anna ("Be kind, for everyone you meet is facing a great battle"), but part of me has become more judgmental, as in, who has the time and money for all this urban-bound, fancy nothingness? I love me some material things, but now I feel so less tempted by them, or that they they are so much more obviously excessive, that they feel almost offensive.

Granted, this is a conclusion I have come to because we have $10,000 in medical bills. Give me that money back and a perfectly healthy second child, and I would probably be singing a different tune. We might have gone on a date to a food court-style restaurant and looked over the city and thought everything is as it should be. Now, though, I am stronger in my seeing that this place is not what it should be. And I think I see that more clearly now than ever because now I actually want Anna as she is.

When I picture her with her hearing, I am not picturing Anna. When I picture her without all these new doctors and therapists, I picture our life void of the patience and listening/cueing/mothering skills they are teaching me. When I picture our life without Anna, I picture something that verges on complacency.

IMG_5468Still, I am struggling to adjust to how much time must be devoted to a child who has both deafness and congenital cmv. Sometimes, we are so swamped dealing with one diagnosis that we forget about the other. We have been so focused on her hearing loss, that last night, I read a bunch of stories online about cmv just to reintegrate myself into the reality of what we are facing. I forget how much we still don't know. I forget that part of my stress is my not knowing. I feel that this not knowing is failing to serve Anna in a preventative sort of way. I feel that because she cannot hear me say I love you, she does not know how deeply I mean it. I feel that one of the hardest parts of all of this is that Zaley needs more time than I have to give her, and if I could, I would take a day-long bath with her, just to feel her hands slow in my hair again, to forget about the color-coded calendar, to hear her voice without urgency as it travels through the magical levels of her nonsense songs, its tenderness as clear as the bubbles. When people ask me how I'm doing, I say I'm doing ok, but there are hours when I feel I'm a pressure cooker that needs its lid lifted and no one knows how to do that, including myself.

I felt so anxious this week that Luke forced me to go swimming, and in those back-and-forths--my first laps since I had Anna--I found that re-entering my own body brought me back to the bodies of my girls with less burden. I often feel that we're so busy, I haven't had an hour to just sit in the wounds of what we are experiencing. Like: this Sunday, when Luke sang alone in the church and his voice rose up to the domed ceiling, I realized, with a start, that Anna has not ever heard her father sing.

Tonight, the thunder was loud enough at first to be mistaken for terrorism. This is the kind of storm we never have in Alaska--the kind that can be measured by its sound and distance. I love to listen to the falling away of the rain. The hallway flashes white and I count in my head, two seconds...three seconds, before the windows above my bed shudder from the soft fists of thunder. Anna sleeps motionless next to me. For now, at least, there is peace.

What We Can Handle

FullSizeRender-22We have so many appointments for Anna, I had to buy a two-by-three-foot wall calendar for our kitchen, which I consult multiple times a day, failing every day to remember what we have scheduled that afternoon. We have appointments with Infectious Disease at Children's Hospital; we have a hearing aid audiologist and a cochlear implant audiologist; we have an ENT; we have an ophthalmologist; we have biweekly blood draws at the lab; we have a case manager, occupational therapist, and physical therapist through state disability services; we have a deaf and hard of hearing resource coordinator; an audio-verbal therapist; an Anat Baniel Method practitioner; and, finally, a good old pediatrician.

I cannot believe that this is what people go through who have kids with health issues--people whose husbands cannot pick their child up from school because she is crying, people who do not have the luxury of their mom coming over with dog food and beef and coat hangers because the grocery store isn't currently possible. Today, because my mom was over for a few hours and Zaley was asleep and the baby was calm, I rushed to Safeway for Zaley's school lunches, and because I am a retail junky when I'm feeling overwhelmed, I turned around in the driveway when my mom gave me the thumbs up for a still-happy baby, and went ahead and bought myself a few sweaters I didn't really need at Ross.

I like to think of our family as not trying to keep up with the Joneses, but because Zaley was trying to eat the other kids' lunches at school, I realized today while grocery shopping what a fallacy this is. I bought s'mores mini muffins and some kind of chocolate-covered dessert bar masquerading as healthy because it contains granola, and pepperoni, and fruit gummies (and truth be told, I almost bought zebra cakes), just so my child isn't the one derailing the preschool classroom at lunchtime because she wants some other kid's "sugar treat." Even though her school is cute and small and the other unassuming moms are also sometimes wearing sweatpants like me when they drop their kids off, I already feel myself ceding to the decisions of other parents, or diluting my own decisions so we can be like the others.

FullSizeRender-21 However, this will not--cannot--be the case with Anna. When I bring Zaley to school, Anna is wearing her hearing aids. I must explain to people that she is deaf. The hearing aids are a point of confusion and a point of marked apartness--one of many differentiations that remind me she is not like the other babies we know her age. She is still so much smaller, so much wobblier--less pronounced, I could say--than they are. When other babies her age smile, their smiles seem stretched to their limits, where hers is, at most, a mild amusement. I am proud of this smile for its moderation and wisdom. Those silly, over-acting other babies, I tell her. Pshhh, so pompous! Chill out, super-smiley babies. Who're you trying to impress?!

I love Anna in an absolute, obsessive sense as she is, but it doesn't mean that I don't notice how different she is.

FullSizeRender-19We are driving 45 minutes to Niwot multiple times a week for the Anat Baniel Method (ABM) therapy my friend Beth recommended to me. Her son with autism benefited greatly from it and I liked the sound of it--it's not "woo woo," it is predicated upon the idea of "brain plasticity"--that the brain is not only constantly changing, but in a child whose brain has been affected by, say, a virus or a stroke, the undamaged parts of the brain can take over and organize functions they don't ordinarily do. Anat, an Israeli clinical psychologist, developed the method 30 some years ago, and the best way I can describe it is very slow, smart, physical therapy for kids who are not "neurotypical," either because of an infection, a hereditary condition, cerebral palsy, or autism. The underlying premise of the therapy is that you work with kids where they're at, focusing on what they can do rather than what they can't, and giving their brain enough variation that they begin to grow because of a new awareness of possibility.

For example, one three-year-old girl with severe cerebral palsy in Anat's book (which I would highly recommend as a mindful parenting book even if you don't have a child with special needs), couldn't walk. After many sessions of observations and working on things like sitting and balance and speech, Anat realized this little girl could not walk because she had never differentiated one leg from another. She came into the clinic with her legs wrapped together by muscles that had never released. By first touching the girl very lightly on different sides of her body, and then having the girl draw a dog on her left leg, and a cat on her right leg--complete with all the many differences specific to a cat and a dog--the girl realized for the first time that she had two legs. She lit up. She moved her legs apart. And soon, she was walking.

FullSizeRender-24At Anna's ABM sessions, she lies on a mat while Barbara (the practitioner here) moves her body through all kinds of positions. She touches the sole of one foot to Anna's other knee. She tilts her pelvis so that her wobbly head gains a little lift. She entices her to eat her feet. She reminds me that we aren't going to focus on the fact that Anna can't hold up her head, but that every muscle that strengthens in her body will lead to her eventually being able to do it. I love to watch Barbara at work with Anna. Anna coos and opens her mouth wide to Barbara's modifications. She is not allowed to cry, and as soon as she does, Barbara either gives her to me to nurse her, or the session is over. I know she's not even 4 months old, but I swear she experiences joy as she moves through all the positions she didn't know her body could take. If she does have cerebral palsy (she has a stiff arm, prolonged reflexes, hyper- and hypotonal muscles), Barbara tells me that starting this early could make the manifestations of it barely noticeable.

FullSizeRender-20 It's funny. When Anna first failed her hearing tests, I prayed that we wouldn't have to get hearing aids. Now, they seem like the smallest of nuisances, and I seem so vain as I look back at myself, sitting in the hospital, thinking, I don't want my daughter to have to wear those. When I found out she was deaf, I wanted to run away, and now I feel our family running towards all that we can find out and learn from deaf teachers, deaf high school students, deaf families, deaf children. When I first learned that cerebral palsy might be a part of having cmv, I felt like fleeing for real, like taking Zaley and Anna to some small doctor-less town on a river,  away from all these acronyms and internet searches and appointments. I would bundle her so her limbs would never be bigger or less better than any other baby who was born healthy on a hot day in June in a hospital where 32 other babies looked up at the lights and nursed from their mothers and went home and lived normal baby lives. But now, I am not running from the implications of cerebral palsy if she does end up having that, too. "This is all part of who she is," Luke reminds me, "And we'll just be there for her through all of it." These are the simple things that make the big things shrink till they're digestibles. I guess I know that you handle what you're handed. And you can't handle what you haven't been given.

Of course, there are still the days when the cliches shouldn't be cliches because they feel so real and singular to this one life of mine: why her? If God is good, why this? Why can't Anna hear me like Mia's baby can when we are sitting with the girls on the couch tonight and both babies are looking up at us and babbling and seemingly listening?

FullSizeRender-18 We found out last week at our long-awaited ophthalmology appointment that Anna's eyes are "perfectly healthy." The leaves in the mountains have turned a sweet corn yellow with burnt edges that look like they've been held up to heat. My mom's cousin John and his wife Mary, who are like an uncle and aunt to me, came to town and played "salon" with Zaley for hours in my brother Michael's backyard. Sometimes watching other people with my children makes me love them doubly. We grilled elk. Anna watched the paper lanterns shift in the breeze. I prayed a thank you for the gift of a simple, unconflicted evening. I said my silent goodbyes to this summer as the brown leaves spun down the middle of the street.