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."