Face of Wonder

We found out on Friday that Anna is deaf. We knew she had hearing loss, but because she had passed one hearing test when she was first born, I did not expect this news. So much did I not expect it that I was eating a Red Vine while the audiologist was explaining the results of the 2 hour diagnostic. When things got real--learning that they had turned their equipment all the way up to 105 decibels, which would be like standing in front of a jet engine--and learning that Anna did not respond in either ear, I put the licorice down and put my tongue to the roof of my mouth to stop the hot build-up of tears. Luke's mom had flown to Seattle to meet me (which absolutely saved me from self-implosion) and at that moment, she put her pen down, knowing that all the notes she had taken about a working ear wouldn't be needed anymore.

On a chart which indicated the decibels of birdsong, speech, the rustling of leaves, the audiologist pointed to items circled in red, with arrows pointing down.  She swept her hand over all these sounds, wiping them away from Anna and away from me. She did not offer me the word deaf, just "profound loss in both ears," until I asked her, "does this mean she's deaf?" and she said yes.

I still can't believe it. I couldn't believe it when we left and it was still a dazzling summer day, people oblivious and jumping from party boats into Lake Union, the surface like white snakeskin under the sun. Me, thinking, how does the world not reflect how much my life has changed today? I couldn't believe it when Luke called and the phone rang loudly right next to Anna's ear and I jumped to silence the ringer so it wouldn't wake her. "What do we do?" he asked, his voice quiet, the roar of the boat behind it. I do not believe it when I get back to Sitka and am sobbing into Jenn's shoulder and the baby is asleep on my chest, and I say to Jenn, "I still can't believe that she cannot hear this," my heart banging behind the baby carrier, one of my hands instinctually cupped over Anna's right ear.

It has been sunny here, too. Jenn and I dragged camping chairs and snacks down to the beach and watched dark heavy boats pulling their loads into town. The kids made sand cakes and ate anything they wanted. Chocolate bars, juice, lollipops, whatever bribery we had tucked into our bags for grocery store trips gone awry or entire days that require no enforcement of rules. I nursed Anna and imagined what her silence is like. Luke's dad told me he thinks she can hear in there, just not the same things we can. I love to think of this when I think of her isolation.

It is likely that Anna did hear me weeks ago. The cmv virus is aggressive enough that it could have taken what little hearing she had in the first month of life. I feel grief, but I do not feel loss. Loss would be if I knew she could hear me for the next two years, and then had to witness her hearing slip away like some parents of kids with congenital cmv do. Loss would be if after these six weeks of scanning her eyes and seeing that she's tracking and focusing, this virus took her vision from her, too.

People always play that game: would you rather be blind or deaf? Deaf, deaf deaf, I think now, looking at her eyes, my prayers a shriek that this favor of her seeing forever will be given to me.

My closest friends have told me their families will learn sign language, they will call me just to say a prayer over the phone. My friend Jules watches Zaley while Anna and I are in Seattle and makes her pancakes with syrup. My priest brother is starting a "thermonuclear novena" for her total healing, my sister-in-law gives me the contact info for the parents of a two-year-old who hears with cochlear implants. Co-workers at Lighthouse and my close friend Sara in Kodiak say the writerly things that cut straight to my heart and begin the healing work with just the right words--the ones I'm not sure I would think to say to someone in fresh grief. My nurse friend Lizzy says, "I know this is a shit hole question, but what can I do for you?" And then she vows to figure out from former colleagues who work in the NICU how I'm supposed to get on Medicaid. A woman on the plane ride home says, "Wow, look at that face of wonder," and asks if she can take a picture of Anna for her two daughters who are sitting behind us, coo-ing at her between the seats. My mom's cards come in the mail at the time of day every mother with a toddler is ready to board a plane to anywhere else.

I wish for clairvoyance now, in the rawness of knowing nothing. I want to see her when she's five, and we don't have to test her retinas anymore. I want to know if cochlear implants will work on her, if she will be able to pronounce an 'S' or an 'S-H' sound. I want to see if she has to hide her eyes because roaming has taken the place of them working.

The audiologist said the best thing to do is treat her like I normally would. This is the easiest thing ever. She is so calm in the mornings right next to me, still so small and waiting for milk and dryness. I do like I'm told, like I would anyways: talk to her, bring my face right up to hers. She has navy blue eyes, lit up from the middle in lighter gray rays, and they have a knowing to them, a fixation that I have seen in other sick kids. They are looking right at something. This morning she smiles more than ever. When I look at her to see if she is seeing me, she does not look away.

 

 

Celebration in the Midst

 

Anna's ultrasound came back clear. No infection in the brain, no signs of calcification, just a little worm-like thing (blood pumping through a coil?) that pulsated on the same kind of black-and-white screen where I saw her so many times in utero, wondering who she would be. I think the same thing looking at her now, wondering what life will hold for her--what her personality will be like, what she'll excel at; what she will need in the next few years, what I can do that I am not yet doing to get an early start on her hearing, her language development, her speech. This development all starts, I am being told, before her fourth month. Before fishing season is over.

But I know people handle all kinds of craziness in the midst of all kinds of craziness. Luke's mom tells me about everything she had to do with her sixth son, who had craniosynostosis. Hung him inside a hammock, had to work up to 20 seconds holding him upside down. She sat specialists around her kitchen table, did energy work over the phone with a man who wrote a book about measuring it through the air. How do we find the right people? How do we know who has the right answers? How do we ever know we are doing enough?

Today, on a long-awaited conference call (taken between two carseats in the back of a running car while nursing a screaming infant and promising Zaley chocolate chips if she'd give me ten minutes of quiet), the Infectious Disease doctor at Children's Hospital in Denver and Anna's pediatrician here finally agreed we can just wait till the end of fishing season--mid-September--for the rest of her tests, rather than fly to Seattle. We had been on our way to church, and in the parking lot, while trying to hear the two doctors over the incoming rain and the thumping windshield wipers and Zaley's whispered song about candy, I said a tiny little prayer of thanksgiving for the first summer in 8 years I have ever had a thought that went: "Thank you, God, for letting us stay in Sitka through this."

I feel like half a year has passed this summer. We have been in the hospital over ten times in the last two weeks. Monday, they tried seven times to draw blood, then finally resorted to extracting it from her scalp. I told the nurse I couldn't do this every week. And unlike what would have happened in a large hospital in a city, the lab manager came, profusely apologized, promised to set me up with their best blood drawer every week (Erin, whose eyelashes are so thick, a single one has to be wider than Anna's hairline veins), and sent me on my way with a $100 gift certificate to a baby and toddler store online.

I'm not sure who to spend the money on: Zaley, who speaks softly into Anna's ear every morning and asks "Is she big yet? Can she hear me yet?" or this swaddled child in whatever clothes we remembered to bring here for her, who seems like she needs nothing but milk and sleep, but who the doctors keep saying will need many things.

There is the inevitable thought: what if we hadn't tested her? What happens to these kids who don't get their twice-daily tutti fruity Valganciclovir in .86mL doses that were walked to a small plane in Juneau by a saintly pharmacist named Michael who called four times to help and speak slowly and ensure that we had gotten the meds and weren't confused by the James Bond-like amber vials bubble wrapped with worriesomely specific reconstitution instructions? Seriously, though. I wonder how much results from naming a thing and how things change when that thing either goes undiagnosed or undiscussed. How much is this medicine changing her? Should we have been doing all of this more quietly so when our friends see her or see pictures if her, they don't think of her as sick?

Probably not. Not only am I prone to over-sharing, in this small town, reticence doesn't trump rumor. It's been best for us to just tell everyone we know exactly what's going on. Everyone knows everyone, some way or another, and now people know Anna. The doctor said he knows my cell phone number and insurance policy by heart. In the frozen aisle of the grocery store today, I had to introduce Anna to three people who have been waiting to meet her.

In the empty ER (a single room with four beds), next to a cabinet labeled Fishhook Removal Supplies, I lie nursing Anna while a kind nurse dims the lights for us and tells me about last week when they had to bring in bunk beds to accommodate higher numbers than usual. Other nurses take both girls so I can pee in peace, and when I come out, Zaley is beaming, all covered in stickers. The audiologist here is from our neighborhood in Denver, was born at the same hospital as me. I love how people identify with each other based on where they were born, as though confirming the singular importance of that single second of birth, of the moment when one body comes out with everything it will always have and always be. This audiologist and I, brought into being within the same walls, brought later to this same island. Both of us listening yesterday to the same small ears with hopeful expectancy.

Anna's ears both failed that test. But we went fishing for humpies with friends when the rain stopped, and the salve was all this living beauty--one baby asleep in my arms, Zaley giggling at the boys who had stripped down to nothing and waded out waist-high into the silvery water, the salmon leaping from the surface in what must be some form of celebration.

 

Hearing Anna's Diagnosis

I am laying in bed. I have given in, I am crying, it is raining. The chickens next door have finally gone quiet after four days of racketing in the sun. It is all white outside and the drizzle on the windows sounds like the pricking of tiny metal needles. It's as though this place knows today is the day I will yield to the grieving. Three days ago: it was sunny, the baby was asleep, and Zaley and I were kicking a basketball in the yard. The phone rang. Before the word "positive" slid out of the nurse's mouth, I knew it was coming, as inevitable as the ball rolling down the gravel path and into the trickling creek. Zaley was laughing at the ball, and I was running after it, feeling--if not in my body--an inward sense of crumbling.

I had never heard of congenital CMV till I looked it up the day after they tested her and found pictures of kids in wheelchairs, eyes asymmetrical, ears pinched down by the smallest of hearing aids. Questions thick in my mouth, but too little time and too much distance between mine and the voice on the other end of the line to get any out. Later, I fill pages of a notebook, plus scattered napkins with questions that don't have answers. "Under-studied" is what doctors call this virus. "Not much literature" on it. I never expected this, none of it. Luke always says I read too much. Now, on the subject of CMV, there is not enough to read.

Now, our careful planning of clothing and diapers and toddler distractions for the trip to Alaska have unravelled into IVs, internet searches, insurance phone calls, blood running down an ankle the width of two fingers. Naps are scattershot, I nurse in the back of the car while Luke drives because I cannot stand the sound of an unnecessary cry. I have memorized the contours of the insides of Anna's mouth as her lips widen in pain in the emergency room, in the lab, at the pediatrician. I am knowing her so differently than I ever knew Zaley, knowing her as diagnosis and baby at once, and trying vigilantly to not let the first confuse the second.

In the white fog of this afternoon, Anna is sleeping next to me making little honking noises she probably cannot hear. This morning they gave us a list of tests she needs. We will have to leave Alaska for almost all of them. I don't want them to have to ultrasound her tiny brain. I don't want to be a testimonial on the website I found about parents whose kids have congenital CMV. My vanity doesn't want a child who cannot speak like other children. My pride doesn't want a child who may not do well in school.

I had imagined two daughters playing together in the yard. I pictured Anna as Zaley's co-conspirator in her tree house, at her tea parties. I know that Anna could make it through this with only hearing loss. But even so, my mind keeps going to the dark, quiet place--what if she cannot speak, climb a tree, hear a song? A mother's imagination is much more inclined towards the severe end of the spectrum than the slight when a diagnosis is almost by definition a series of unknowns. I guess picturing the worst is my way of preparation, of premature (and illusory) steadying. "Late onset" has taken on a sinister tone every time I see or say it. She might be fine, she will be fine, part of me says. But the internet is very good at refuting both our good sense and our hope.

Luke's aunt whose son is undergoing his hundredth of surgeries says to "guard my imagination." I picture a gate when she says this, the sound of it locking down. Inside the gate is a tea party and two girls. I am not allowed to imagine more. They have cups raised to their mouths. One girl is smaller than the other. I am not close enough to see the wires of cochlear implants or listen to the sound of their voices. When I'm being good, I do not try to rattle the gate or peer in.

Friends offer help, my mom feeds her bottles which she drinks vigorously. I keep a tally of the ways her health must certainly outweigh the three letters of the virus stamped on her charts now, forever. Her hearing will be tested for the rest of her life, lest it begin to slip. I go to the rosary this morning and a friend says Anna is the angel they have been praying for. I feel selfish thinking about her health so often, this healthy-seeming baby who may be just fine, just not according to my idea of fine.

I want her to hear like Zaley did during these newborn days of little songs, my voice for Anna gone high again with love. I realize a diagnosis raises your awareness, antennae, expectations, makes every tiny movement of the eyes a harkening back to the shuddering eyelids of your firstborn, none of which you can really remember, but you could swear you do remember, and that these sisters are made of exactly the same stuff, surely there is nothing wrong, there just couldn't be, because it wouldn't be fair.

I know though, this isn't about fair. It's about the way life changes, the way a body fights, the way a mother fights (mostly with insurance companies). It's about accepting what I didn't want, which I am not good at. It's about fitting our lives into Alaska, complications and all, even if this would be easier at home. I am finally reading Thomas Merton's The Seven Storey Mountain, and he writes of his nomadic childhood: "Every new development came to me as a reasonable and worthy change...people came into our lives and went out of our lives. Things were always changing. To me, it seemed as natural as the variations of the weather and the seasons.

I accepted it all."