DAY 4
More abdominal pain, now accompanied by high fevers. She’s sweaty and lethargic, twisting around on the bed, making whimpering sounds. If we sit beside her, she pushes our hands away, “Get off.” If we get up, she’s anxious, “Where are you going?”
When we ask her, “Are you hurting?” she shakes her head. This “no” is a blanket rejection, it’s as if she’s saying no to existing.
I ask, “Do you want a cool washcloth?”
No.
“Shall I tell you a story?”
No.
“Should I stop talking and be quiet?”
No.
“Shall I keep talking?”
No.
“Do you want me to rub your back?”
No.
“Are you sure?”
No.
“Do you want the TV on?”
No.
“Do you want the TV off?”
No.
“Should I get down from the bed?”
No.
“Shall I stay next to you here?”
No.
“Are you hurting?”
No.
“Are you sure?”
No.
Her world is contracting to its component parts: the blanket’s plush edge, a mouthful of water, Brian’s voice at a whisper telling the anty story, again. Small mercies. Stimulation of any kind, even light, seems to pain her.
Still, I hesitate to start the morphine pump that has been standing beside Gracie’s bed for the last many days. When Bobbie arrives late in the night, Gracie is curled up in a ball, not sleeping, but not moving. Bobbie says, “Come chat with me in the hall.”
“She’s hurting,” Bobbie says.
I tell her about the boy we played dominoes with in the common room, whose hands shook. His small face shook. His entire torso shook and shook. His mother had whispered, “Too much morphine—nerve damage—don’t do it.” Another mother told me her child required surgery for the complications caused by constipation from the morphine.
“She’s hurting,” Bobbie says again.
I am afraid that morphine is a gateway drug to the place where children turn into old people, where they bend and shake and rail against their will. After morphine, I’m afraid they can be patched together but never made whole.
“She says she’s not in pain,” I tell Bobbie.
I am also afraid to acknowledge that Gracie is in pain so severe only opiates can extinguish it.
Bobbie looks at me, half empathy, half horror. “Look at her,” she says. Gracie is limp and unsmiling. An inert mound of girl.
Bobbie knows what suffering looks like; she’s witnessed people suffer on at least three continents. She will not collude in denial. She is waiting for my answer; she doesn’t look away from my face.
I hesitate. The domino boy shook and shook.
Bobbie says, “Listen, just try it. If she responds well, then you’ll know you did the right thing.”
Maybe I’ll call Brian to ask his opinion but probably not. He is already angry with me for not starting morphine sooner. He thinks I’m imposing my California drug-averse paranoia on a child in pain. But he didn’t hear the mother say, Nerve damage—don’t do it.
“OK,” I tell Bobbie. “But just a single bolus dose, not the continuous drip.”
“You got it,” Bobbie says.
Finally, Gracie sleeps. A true, sound sleep. She does not whimper or roll from side to side. She makes no sound or motion for five full hours. When she wakes up she is not only refreshed but vaguely excited. She demands the bed controls, she motors the head and foot up and down until she finds a configuration that pleases her: a U-shaped bed. She scrambles to the top of one side and slides down into the valley in the middle. Sliding down, she says with pride, “Look what I made.”
Bobbie has left for the night. I can’t call her at home to say, “Thank you.” But I ask the new nurse to start the continuous drip. It has a bright red self-administration button that Gracie can push any time she hurts. She won’t have to say she hurts; she won’t have to admit defeat; she can just push the button.
DAY 5
When Bobbie comes in, Gracie beams. “Bobbie!” she says. “I feel like I’m gonna have a bath.” Bobbie looks at me with delight, not an ounce of I-told-you-so.
In the bath Gracie plays with her plastic horses and croaks out their stories in her newly raspy voice: “I’m falling. Catch me. He got up!” I wash her hair, which has begun to fall out. When I run my fingers along her wet head, dozens of strands cling to my palms in dark lacy patterns.
I call Brian into the bathroom; should we talk with her about going bald? He sits down on the toilet. Gracie is happily drowning her ponies, one by one.
Brian says, “Sweetie, can you listen to me? Do you remember how Mommy and I told you your hair would fall out? That’s happening now. In a while your hair will be gone. Then, later, it will grow back, maybe curly.”
“Daddy,” she says. “I don’t want curly hair.” Brian looks at her. A resurrected pony is swimming, by her hand, the length of the bathtub underwater. She lifts it up. “This guy has a flag on him butt!” He’s the patriotic My Little Pony, stars and stripes cover his haunches.
“Wow, he’s lucky,” Brian says. “I wish I had a flag on my butt.” She doesn’t laugh but gives him a charity smile.
I give him a pointed look. Press on. Tell her she is going to lose her hair. All of it. “She’s as prepared as a three-year-old can be,” he says later. “She heard us.”
I nurse a flame of annoyance. His way may be better, but I can’t stop myself from wanting to explain things or from wanting the reassurance of hearing her responses.
She’s only three, Brian says in my head. Three. She’s three. Soon to be four.
The most important thing is for her to feel we are united in loving her, protecting her. Brian is still sitting on the toilet, chatting with the red, white, and blue patriotic pony.
“And you, sir,” he says to the pony, “what are you going to be when you grow up? You can’t stay a pony with a flag on your butt forever, you know.” Gracie finally laughs.
I want to touch Brian, hand to knee or chin to head. But I don’t. The most I can do is be in the room. The two of us and her. Mostly her.
My field of vision is narrowing; I see Gracie huge, each tooth as large as a farmhouse, each eye as wide as Lake Tahoe. Everyone else is vaporous, grayed out, barely visible.
Later, when Gracie falls asleep, Brian (ever sensitive to unspoken thoughts) says, “We don’t have to disappear each other to get through this, you know. We can do this shoulder to shoulder. Maybe even face to face.”
“Or,” I say, “we can just see each other on the other side.”
DAY 6
Her first words on waking are “Get this hair off me.” It is everywhere. Coating the sheets and pillows, all over her clothes. “It itches,” she says, as if there were no worse fate.