We offer her a buzz cut; she accepts. It’s a classic you-can’t-fire-me-I-quit solution.
After we are done with the clippers, she turns to me and says, “Now I’ll do you.” I am prepared to do it though I hope not to. I like my hair and already had a buzz cut once in the wake of a disastrous dye job. If I’d been thinner, I might have looked tragic or mysterious or hiply countercultural. As it was, I’d just looked like a military reject or a confused spiritual recruit. Buzz cuts do not become anyone, except the young Sinéad O’Connor and the old Georgia O’Keeffe. Otherwise, not to be attempted.
Thankfully, Gracie seizes instead upon two of her favorite ponies, both of whom are happy to make the sacrifice. She hacks off their plasticized manes and tails with a silver nail scissors, humming to herself. “It’s just hair,” she tells them, “you don’t need it.”
Later she perches a single rider on top of a horse’s head and makes the rider jump into the ocean below. In her play, peril is the driving force. Figures are perpetually falling and being saved, drowning and springing back to life.
Before she falls asleep, in one of her soft, pre-dream moods of floating affection, she turns to face me. “Mommy,” she says, “it’s all love from me to you.”
DAY 7
We can once more see the pale strawberry birthmark at the nape of her neck. I’d forgotten it was there. How is it possible to forget something intrinsic to your child?
Gracie doesn’t mind being bald. She is delighted to be done with the hair in her bed, on her pillow, down her shirt, in her ears—itching her. Rubbing her bald head reminds me of the tenderness I felt for her five-pound infant body. Touching her scalp is oddly comforting; it is as if she’s imminently reachable, right there, living on the surface of her skin.
She loves this. “Do my head,” she’ll say, and tuck her skull into the palm of our hands.
For us, it’s weird. Her baldness triggers a series of chain reactions in the brain. It’s not only that she looks like someone on chemotherapy—which reads cancer, which reads death. And not only that in myth the loss of hair signifies diminishment of vigor, life force, and defensive power. What’s most disturbing is that she’s beginning to look like them, every other child on this ward. It feels like the beginning of an unstoppable slide taking her farther and farther from us.
We knew; we watched the other kids transmogrify. In the before photos taped to doors, bright-eyed, glossy-haired children lean back in swings and stretch their legs toward the horizon. They lean out of their lawn chair, arms reaching upward, as if to capture a cloud. But the children inside the rooms are swollen, bent, and bald. They look broken. It is as if, one by one, each child has been forced into the decrepit body of an old person.
I know she’s Gracie, and she knows she’s Gracie, but she looks very little like our daughter. The incremental changes, the hair loss, the swelling around her eyes, the puffy, overinflated quality to her extremities, have accumulated. It is bizarre to look down at your child and not recognize her.
Suzi writes from India, “Thank God she is on the inside looking out.”
DAY 8
She has two kinds of recurring pain: acute cramps right before she vomits and chronic pain from the sores we assume are in her stomach and intestines. She’s spiking fevers and is hypertensive. Bobbie comes in and out; she whispers to Gracie and rubs her feet. The doctors round through, all saying the same thing: her misery is “normal.” The morphine’s ability to abate pain is diminishing. She doesn’t motor her bed up and down anymore. She smiles very little, only as a kind of gift to us.
Still, her refusal to see herself as sick or deprived is dazzling and a little scary. One minute she is vomiting up stomach bile. The next, she wipes her mouth and picks up her ponies. Back to playing. She has no inner narrator, lamenting her situation, saying, “Oh, I’m sick. I can’t believe I’m sick.” To her, throwing up is sick. The second that is over, there’s no reason not to play. And nothing to be said about it.
As much as I admire her, I wish she were less stoic and more able to talk about what she is experiencing.
“Gracie, you can say you hurt,” I tell her.
Brian scowls. “Let her coping mechanisms work the way they work. If she knows anything better than us, it’s how to cope.” I know he is right, and I resent him for it.
I begin to pray with her at night. I only do it when we’re alone. When she has enough energy, she’s game. One night, when our single tree rubs its single branch against the window, she says, “That’s the God.” When we pray, she is very casual with God, very offhand. She likes to end her prayers with “Tah Dah!” Sometimes she signs off with “Have a nice night!”
I imagine her God as a mashup hybrid of Jimmy Stewart, the Wizard of Oz, and the three good fairies of Sleeping Beauty, Flora, Fauna, and Merryweather.
I also pray. I’m not so casual. I am respectful, subservient. A blatant suck-up. I don’t believe that what—or who—God might be is involved in micromanaging children’s illness or recovery. But neither can I stop from groveling. From doing anything that might give her relief.
DAY 9
Tomorrow begins the most critical period, Days 10 through 20, when she is at risk for developing veno-occlusive disease. VOD. Dr. K told us repeatedly that Gracie’s VOD risk was high, given the condition of her liver and the force with which the chemo drugs will hit her system. I keep reminding myself of the many ancient alcoholics in the world—the liver is resilient; it can take tremendous battering and remain functional. Still, every organ has its breaking point.
VOD shuts the liver down immediately. When the liver is unable to perform its filtering functions, fluids back up in the abdomen and then, ultimately, in the lungs. Patients with severe VOD essentially drown from within. We were told this. And we listened, but we didn’t hear. It was so far in the future, Day 10 through Day 20. Now it is Day 9, and there is no way to get out from under tomorrow.
DAY 10
Gracie does not know that the next ten days matter in a way no other days have. She does not know what VOD is. Or double-blind studies or percentages or morbidity rates.
She knows that Tough Guy never leaves her side, and that she will fall asleep with one parent or another stroking her bald head. She knows that her mouth is sore, her lips are cracked, the pink skin lifting away in thick rinds. She knows that her fevers come in waves. That when her stomach cramps, she can push the red button. She knows that when Bobbie leaves, she will be back. She knows she’s stopped eating. She knows she misses Eden. She knows she is up all night, awake while it is dark, asleep while it is light.
She’s flipped her days and nights, which is common for kids uncoupled from time; from sunlight, from weather, from family meals, from trips to the pool, the farm, from a walk around the block. All the ordinary signposts that locate us in the day don’t exist here. She knows she wants to go home. And, that she can’t.