She began to speak an invented language all her own; she called water nangi and carousel ponies, slides, indeed anything you could ride (which, from her point of view, also included Lulu) wha wha. She was an imp, into everything. An imp with a hospital habit. The only good thing was that she seemed to have a fantastically short short-term memory. Whenever we entered the hospital, she would waddle in, waving at strangers as we walked toward the lab, toward the blood draw. She would greet the nurse on duty with her porpoise grin. It was not until the needle appeared that she would try to climb me like a tree.
We were no closer to an answer as to what exactly was wrong with her. At various points, Dr. Koerper believed she might have: Diamond-Blackfan anemia, a malfunctioning spleen, megaloblastic anemia, thalassemia, autoimmune hemolytic anemia, pernicious hemolytic anemia, Biermer’s anemia, and on it went. She had none of these, but to be fair to Dr. Koerper, neither did she have anything else with a name and a prognosis. What she did have, more every day, almost every hour, was personality.
She loved horses and feared tigers. If you showed her the scene in Spirit (the Disney movie about wild Mustangs) where the herd thunders over the horizon, she would shout, “Dey go! Dey go!” Her first two-word sentence. Their exhilaration was her exhilaration. Some months later, she would begin to call out to us from bed, perhaps reflecting on some of the more invasive things she’d experienced, “I not afraid of tigers. I safe, I safe!”
Our clown, our playful sprite. Our terrified girl who denied her fright.
That she was not safe, that there was nothing we could do to keep her safe, was the vein of misery running through our lives.
Because we were in California, we approached this problem as Californians. We tried everything: cranial sacral therapy (touch the head and hope for the best); moxa treatments, in which one lights a thick bundle of herbs and holds it near various pressure points (accidentally burnt her leg); homeopathy ($400 to walk in the door and hear homeopath’s thoughts, $300 for actual remedies to support baby’s constitution); visits to a Brazilian faith healer, who said, “She is very sick, and she will get well” ($100); visit to the cranial sacral guru in a hushed hall where we awaited him, with restless toddler, for over two hours (he arrived, wearing a sleek black turtleneck, and instructed us to address him in the honorific). We were hoping, hoping, hoping. In vain.
As cynical as I sound, I’m a believer. I’ve been helped, many times, by complementary medicine. But whatever Gracie had lay beyond its fragile reach.
It astonished and moved me that Brian tolerated all this. In fact, he endorsed it, sought it out. What more vivid sign of his desperation to help Gracie could there be? This highly rational man with the aristocratic forehead, this man who did not believe, even, in God, was willing to believe, if briefly, in a cure predicated on skull tapping.
*
One Sunday after two long days at the hospital “getting blood,” Brian and I took a drive out to Bolinas Bay. I wanted Gracie to see the water, wanted her to play in the sand. Wanted her to forget about indoor life. But she was her father’s daughter—deeply suspicious of any situation that requires removing your shoes.
Before Gracie, I’d once taken Brian to a California beach; I was excited to show him the Pacific Ocean. It was a clear, bright, windy day. At the edge of the sand I took off my shoes and ran toward the waves. Brian followed hesitantly. When I looked back he was trudging toward me still wearing his black “work shoes.” I was a little alarmed.
“Are you going to take off your shoes?” I’d asked, laughing, hoping it was a joke.
“What do you mean?” he said. “Why?”
It seemed to me that if you were a person who would walk across the sands of a California beach on a beautiful day, wearing office shoes, then you must be alienated from your true nature. It didn’t occur to me that Brian was in fact being himself: an Upper West Side Jewish intellectual, at the beach. It wasn’t that he didn’t want to be there; it was that he had to be there as who he was.
The first time we ever sat in a room together, alone, in his cramped office at NYU, Brian asked me what I had planned for the summer. I told him I’d applied for a writer’s residency in Maine.
“Maine,” he said derisively, “what’s there?”
“Nature,” I said. “You’ve heard of nature?” I gestured out the window to his view—a solid brick wall. “What’s there?”
He glanced outside. “Every one of those bricks reflects human intention.”
At the little beach on Bolinas Bay, I slipped off Gracie’s sandals; she clung to me, refusing to touch her feet to the sand. Sand, from her vantage point, was unknown, unstable, and strange. I walked half a mile along the shore, trying to set her down from time to time; each attempt ended with her clinging to my shirt, trying to climb me, always trying to climb me, to get away from the perceived threats of her world.
“Don’t force her,” Brian said. “Let her figure it out.”
I took her to the edge of the lagoon and crouched down so she could, while perched on my knees, lean over to play in the water’s wake. Brian squatted down beside us, picked up a sand dollar, and showed it to Gracie. He didn’t say, “Look, a sand dollar!” just handed it to her. She turned it over and considered its smooth round shape, shook it. The sand inside rattled. She put it in her mouth. We offered her a cracker as an alternative. She threw the cracker into the water and laughed. After a few minutes she touched a toe down on the wet sand; it yielded to her weight. She lifted her toe back up again and put an arm around Brian, an arm around me, swinging from our necks, feet above the sand. “Look at the birds,” I said, spotting a few sandpipers skittering away from the tide.
“Dey go!” she laughed. “Dey go!”
Driving home, Brian and I were quiet, waiting for her to fall asleep. When we heard the deep metronome of her breath, he said, “This is good. We’re onto something.” I smiled at him, silent. Feigning mystery, feigning elusiveness, but we both knew he was right.
If I wanted to have children with anyone, he’d said, it would be with you.
And now she existed. But our world still rested on the slender shoulders of two letters. If. If we could count on her to go on being her.
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