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.