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.