Gracie would laugh, problem over.
Brian’s creed was humor over force. I tried, but I wasn’t good at it. I took the kids too seriously. I treated them as if they had as much, or more, power than I did. These were not world rulers, but I let them rule me. Which was nuts since one of them wore Dora pull-ups and the other insisted (nonverbally, but forcefully, successfully) on sleeping in his new bumblebee boots.
Brian’s problem, I decided, was that he was not taking this entire situation seriously enough. That was hogwash, and I knew it was hogwash—he’d been up till 3 a.m., madly Googling bone marrow transplant survival rates every night this week—but that did not stop me.
“Did you not hear Dr. K say, less than an hour ago, ‘Kids with weak livers have a hard time’?”
“You don’t have a monopoly on fear, Heather. I’m scared. I’m just saying if we relax a little, it will be easier for everyone.”
The surest way to enrage a tense person is to tell them to relax.
“Oh, you think you’re so great? You think you’re Mr. Kid Whisperer?”
“Only if you do,” Brian said. And took my hand, which felt like the kindest thing anyone had ever done. I wanted to reciprocate, but I’d drifted so far from thinking about Brian’s needs or wants that I couldn’t conjure what he might like best. Something simple. Music soothed him; he was always putting on a song to take the piss out of a bad moment. I picked up the iPod and found David Gray, a songwriter we used to listen to in his studio. Before kids, before all this mishegas. Back when the best way to spend Saturday afternoon was together, in bed.
At home we shoveled the kids into their pajamas. As soon as they were settled, I climbed into bed with the remote. Brian slid in beside me. “Do you want to keep talking?”
“Maybe,” I said. I knew we should turn the TV off and turn to one another. We were lucky, our kid was going to get a cure. We had two great-smelling people under our care. Neither of them was in immediate danger. We should celebrate the good.
But the wellspring of warm feeling for Brian that had flooded me in the car was gone. In its place was a jagged pile of unpleasant facts: in a few days he had to fly back to New York to teach at NYU and Sarah Lawrence because, even if we could have afforded for him to stop teaching (which we couldn’t), it was essential that we maintain our health insurance. I knew that as hard as it would be for me without him, it would be harder still for Brian to leave Gracie. To worry about Gracie while forcing himself through the motions of pedestrian life. We should strategize—logistically, emotionally, maybe even spiritually—about how to get through this.
But talking, in Durham, felt like a pointless, Sisyphean task. Talking could not guarantee her survival.
So if not talk, then sex. We were on a lifesaving mission; why not fight death with the oldest trick in the book?
But sex, in Durham, felt self-indulgent. “Sex is a luxury vacation,” I said. A remote, tropical location, which cost too much to reach.
“Sex?” Brian said, bemused, maybe hopeful.
“Brian,” I said, “if I wanted to have sex with anyone, it would be with you.”
To be together meaningfully invoked complete focus, devotion. Communion. Full, unified attention. Surrender. I didn’t have that to give. I suspected Brian didn’t either. The most crucial part of me was holding one end of a rope. The other end was attached to Gracie. That was my whole job: hold the rope. No matter what, hold on to the rope.
33
“These look like stereo cables,” Brian said. In his hand were tubes identical to those that would soon be protruding from Gracie’s chest. Every transplant kid had venous catheters, or “central lines,” surgically implanted into the subclavian veins leading directly to the heart—to deliver medications and TPN (fake food). Gracie was getting hers early to facilitate chelation.
To help prepare her, the hospital had sent us home with a little rag doll with stark white skin and primary-red hair. We cut a short slit in the doll’s chest and gave it to Gracie with the tubes sprouting from the doll’s heart.
“After tomorrow, sweetheart, you will have tubes just like the dolly has tubes.”
She looked at us, amused. Lately, we said so many strange things.
She pulled the tubes from the dolly’s chest, stuffed them in, pulled them out again.
“You have tubies,” she told the doll. “You can get plugged in.”
She humored us but did not believe, not for a minute, that we would do something so medieval to her.
The next morning she looked up from her elephant pancake. “How do they get the tubes inside you?”
I explained that they made a small cut in the chest. The, not your.
“I’m gonna have a hole in me?” she asked.
“No, lovey, they stitch it up.”
“Sew me?” she said, aghast. “I will run so fast you will never catch me.”
The hospital had given us a book for exactly this situation. In it, a little girl about to get a central line is comforted by her best friend, a bear named Teddy. At the very end of the book, Teddy points to the tubes snaking out of the girl’s shirt and says, “See, I told you it was a good idea.” At this line, Gracie looked at us in disgust. “Teddy is stupid,” she said.
The day of the procedure, the surgeon came into the room to talk with us first. She asked if Gracie had any questions. Gracie nodded, yes, but was so shy that she asked me to have the doctor cover her ears, so that she could ask me her question and I could relay it to the doctor. The doctor covered her ears.
Gracie looked at me and said, “Ask her if it hurts.”
“Will it hurt?” I asked the surgeon.
“Not during the operation,” the surgeon said. “But afterward it might.”
Might?
The surgeon showed Gracie the oxygen mask. “This will help you fall asleep while we operate.”
Gracie, looking at the mask, gestured for the surgeon to cover her ears again. “Will I be able to really breathe in that?”
“You will, my love.”
We were allowed to walk her into the operating room and stand beside her until she lost consciousness. I knew the difference between being dead and being unconscious. But they had too many things in common for my comfort: limp hands, the inability to answer when spoken to. I hated the whole deal.
Brian laid his arm across my shoulders with strong, steady pressure. “She’ll be OK,” he said.
An hour or so later, sitting in the waiting room, we heard screams. Little-girl screams, high-pitched and fierce. We followed the sound, at a run, to find Gracie sitting up in bed staring down at the tubes dangling from her body.