Look at the child.

Would it be overly dramatic to begin this post with a reference to the opening line of A Tale of Two Cities, to say of the past few days, “It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness,” &c., &c.? Probably. So I won’t. Yet I did!

Weirdly enough, I’ve been craving nineteenth-century literature since I’ve been here. I’ve told you that this place is a ghost town on the weekends. On our first weekend, I was returning from the kitchen through the twist of hallways that lead you in the back way—because the nice man at the desk makes coffee at 9 a.m., and us long-timers are welcome to grab a cup (the cafeteria being closed and gated until 11)—when I spotted The Mill on the Floss on a cart of free books. It felt like a sign. I haven’t broken the spine of this book yet, but I’ve been carrying it around with me for 12 days. I can’t imagine reading anything contemporary right now. I don’t want to be carried away to somewhere else that I could conceivably be, but I wouldn’t mind spending some time in the English countryside a hundred and fifty years ago. Plus, those people knew bedside care. The women were always tending to someone. Sisters from another (mustachioed) mister.

Over the past few days I’ve had to confront the seriousness of Vivian’s condition. I’ve realized that the five years of castings and braces had given me a reprieve, allowed me not to dwell on that fact, because if she’s been constricted she’s also been free. She’s been a kid. But here I am in the center of the place that before I’d only just skirted the edges of.

You might have heard me describe progressive infantile scoliosis like this: “It’s like the adolescent-onset kind, only more serious because the twisting and curvature of the spine as the child is growing can affect the development of the heart and lungs. If untreated, it can lead to death in early adulthood.” You see, I know that it’s serious, I have always known, and still I have felt angry with the doctors for making Vivian endure the halo and for keeping us all here for over a month. I have been upset that we only just recently learned that it will take some time for Vivian to recover after surgery—she’ll have to learn anew how to balance and move her body—and that she will not be able to ride a giant roller coaster or become an Olympic gymnast, her opportunities limited and her only 7. I have compared our experience here to being incarcerated, only in the nice kind of prison, like the one Martha Stewart went to, where she had plenty of time to crochet ponchos for other inmates and might have been allowed to touch the people who came to visit her.

But all of this has to be. It’s been determined not by the docs but by Vivian’s DNA. That is the hardest thing to remember, to fully realize. The doctors are helping her in what is literally the best way possible in 2014. It’s a kind of miracle that 13 lbs. of weights, two pulleys, some rope, and 6 screws are pulling Vivian’s back straighter as I write, and more of a miracle that she is racing around this place with no pain and in very good spirits. I’m watching all of this go down, and I’m realizing that my daughter has this serious spinal disorder, and that she’s going to have many surgeries, and that her spine will never be straight. I’m realizing that she will probably be very small, and I’m worrying about how other people will treat her down the road. And then I’m thinking, this is Vivian; she is terrific, and she has family, and she has friends, and she has spirit, and this is her life, her “one wild and precious life.” It’s fear and anger and wonder and gratitude and love, you guys. That’s the soup I’m swimming in.

The last time Vivian, Alex, and I were in a hospital for a month, Vivian was recovering from esophageal surgery and the event—superior vena cava syndrome—that almost killed her. One night, a NICU or surgical resident couldn’t get a good blood pressure read on her, so he ordered a blood transfusion. It was to be her second. I was alarmed, and I objected, and I asked him why it was necessary. She was only three months old. Just as he began to explain, Vivian’s surgeon walked in. It was nighttime, and he always visited before he went home. We told him what was going on, and he walked over to Vivian, so tiny and attached to all manner of tubes and wires, and he took her blood pressure. It was normal. He turned to the resident and dressed him down. (The poor guy was mortified; he never made eye contact with me again. For all I know, he quit the program after that. It cannot be easy to be a resident.) I remember what the surgeon said: “Look at the patient.” What he meant was, Does she look like someone who needs a blood transfusion? Machines can malfunction. People are reliable sources of information.

I think of that line often, only I say, Look at the child. There’s the diagnosis, and there are the surgeries forthcoming, and there are the possibilities of complications, and there are the stories the other parents here tell me about their children, stories that terrify me, and there is the child, my child, our child. And she is smart and beautiful and resilient and strong and scared and homesick and a little angry. What does she need right now? Right here? That is what I focus on each day in order not to lose myself in what might be or could have been.