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.