But he couldn’t help himself; he had generally good impulses. When Gracie whined for more chips or another video, Brian would ask if she knew what the fairies did with children who whine.
“What do they do, Daddy?” she would ask, in her regular voice.
“Nothing actually. Fairies love whining.”
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.
She pointed at the tubes and said to Brian, “Daddy, you need to call the doctor. She made a big mistake.” She began to cry. If screaming was bad, crying was worse. Her screams possessed an overtone of fight. The tears were defeat.
Brian calmed Gracie down by telling her a story about a clan of anarchist ants. I hoped the sound of his voice could carry her away from the glare, the noise, the pain of the recovery room, and deep into the velvet pocket of her own imagination. I knew she would relish diminutive creatures toppling a king. In Brian’s version, the ants began to eat away at the palace, brick by golden brick. By the end of the story Gracie was adding her own twist to the king’s comeuppance, in a voice still hoarse from the breathing tube: “… and then they ate his feast food. And his hair. And his shoes. And then he was a bald, hungry, barefoot king, and nobody would be his friend.”
In her worldview, to be friendless was the worst possible fate.
After a few hours, they let us go home.
The next morning she came into bed with
us and held up her shirt to reveal the tubes.
“This hurting keeps moving around on me.”
Gabe stared. “Gracie’s tubies,” he said.
Brian went to fetch her some pain medication.
“Gabe, you can touch them,” Gracie said. But he did not want to touch. He didn’t even want to look. Me either. I hoped she couldn’t sense Gabe’s revulsion. Or, pray God, mine.
Brian said, “Can I touch them, Gracie?”
“Sure, Daddy,” she said. She handed him one tube. “Let’s be puppets.”
“Puppets?”
“Puppets!” and she began to make her tube speak to Brian’s tube.
And like that, the tubes were part of the family. Tiny, animated presences enlivened by the life force of the girl who wore them.
We’d been instructed to examine the entry site daily for signs of infection. I’d call Gracie over, and she would happily lift her shirt. “Nothing is wrong with my tubies,” she’d say. My tubies. Hers. Gracie would stand and wait for our worry to pass. She was patient, patting Brian on the head. “Good dog, Daddy,” she’d say. The tubes entered her body under a clear patch of Tegaderm. We’d been warned that if they were ever pulled out, she would bleed profusely, and so we were incredibly careful with them. But she didn’t fuss over them.
It was astonishing how willing she was to overlook the pain they’d caused, the ongoing annoyance, and the betrayal, on our part, that they represented. She accepted them: two white, soft, rubber straws, tucked beneath a mesh vest, pressed against her torso. They ran straight into the center of her chest and disappeared inside her.
The trope of kids’ resilience was almost grotesquely true in Gracie’s case. It felt as though, given enough time, she could adjust to, accommodate, stake imaginative ownership over anything. I worried that if we attached, say, the front end of an old Chevy to her midriff, she’d be driving herself around the living room within a week, shouting, “Look at me, I’m car girl!” I wanted her to complain, protect, resist. To assert her right to be a kid, without amendments to her person. But that wasn’t her way. Her way was to make peace with the invading army, to claim it as her own.
34
Gracie got into the habit of running into our bedroom every morning to ask, “Is this another hospital day?” Typically, we’d say yes; so far, all we’d seen of North Carolina was the inside of pediatric hospital treatment rooms. Finally, after two weeks, we took a surprise day off.
“No hospital today!” Brian said.
Gracie was giddy with disbelief. “Really not?” she kept asking, as we got dressed, as we sat down to breakfast, as we got in the car. “Really not?”
“Not,” we said. “Really not.”
“Can we go swimming?” she asked. Then a second later, “Can we go to a forest?” And then as we’d begun to drive toward the park, “Wait, can we find ponies?” The pleasure of granting her small wishes was immense. We knew of a ranch nearby.
“We can find ponies and cows. Maybe even sheep or llamas,” Brian answered.
“Can you ride llamas?” Gracie said.
“If anyone can ride a llama, Gracie, it would be you,” Brian said, and she burst into squeaky laughter. We looked at each other, soak it up.
At the ranch Gracie went mute with excitement. We kept asking her, “Is this fun, do you like it?” but she wouldn’t answer. She just looked from right to left, left to right, with her mouth slightly open.
“Horses!” she finally shouted as we walked between two pastures. On either side of us were sleek thoroughbreds, haughty fashion models tossing their glossy manes. Lustrous with good health, grazing their way through untroubled lives. I felt a bizarre surge of envy, even resentment. I wanted what they had, for Gracie.
We found the stable manager, who let Gracie pick between a high-spirited roan and a docile, sway-backed Palomino named Whispers. Gracie made the sympathy choice. She reminded me of my mom, who always took home the misshapen, orphan Christmas tree. The last tree on the lot.
“Do you want to feed Whispers before your ride?” the stable girl asked, and handed her an apple. I wished for some transfer of energy or identity to pass between them in that casual, exchange. I hoped the girl would confer on Gracie whatever it was that made her own ponytail so thick it could barely be contained by a rubber band. Be a girl like this someday, I willed. Be sixteen, be a barn rat. Be a girl with a crush on a horse and muscular shoulders and seven guys in love with you. Or just be sixteen, in any condition.
The girl fit a hard hat onto Gracie’s head and patiently helped her up.
“Bye, Whispers,” Brian said. “Have fun with Gracie. Don’t ride her too hard.”
Gabriel let us swing him up onto a very old, barely breathing brown mare. But the moment his butt touched the saddle he cried out, “Down. I off!” I walked him over to the arena’s edge. Every time Gracie passed our spot, it was a celebrity sighting, “Sissy rides! Sissy! Sissy!” he shouted out for acknowledgment, a wave, anything.
As we watched Gracie, a cat came up to Gabe, sniffed him, then settled down in the grass at his feet. Gabriel, having discovered the pleasure of retroactive commands, said to the cat, “Fall down!” Then he offered his hand to the cat. “Help?” he said. This was a favorite game he had with Brian; he’d push Brian down and then help him up. He seemed baffled when the cat ignored his offer. “Kitty don’t yike me,” he said.
“Did the kitty say why?” Brian asked.
Gabe ignored the question and pointed to the grass, saying, “Down, Daddy!” Brian obliged. Anytime Gabe found one of us at his level, he would scramble onto our backs. He pushed now at Brian’s shoulders. “Be a pony, Tiger!” Brian moved mildly across the grass. “Be a tiger, Pony!”
On the drive home Gabe fell into a deep sleep, but Gracie was too excited to nap. “I rode Whispers for a long time,” she said. “And she was a good one.”
Brian and I looked at each other, triumphant; we’d made her happy. We could still do that. Her toes were dusty. She’d ridden an animal bigger than herself. She’d had joy. For that matter, so had Gabe. So had we.
Later that night, at dinner, we told Gracie that in a few weeks she’d go live in the hospital for a while. She looked at us.
“I guess Eden doesn’t have to go to the hospital. My friends never get blood. I guess they are going to get big.” We leapt to remind her she would get big too, and that most people spend time in the hospital at some point. At the same time, we wanted to acknowledge what she suddenly seemed to know—that she was an outlier.
After dinner we all climbed into bed to watch Shrek. The kids were not particular fans, but Brian and I loved Eddie Murphy’s donkey. (“That’s right, fool! Now I’m a flying talking donkey!”) Lying in the king-size bed in Durham was a luxury after years of squeezing into beds too small for the four of us. We could sprawl out. Gabe got as close as possible to all in his proximity; Gracie was happy with an elbow touching one parent, a toe touching another. I felt the swell of well-being that comes from being in physical contact with everyone you love most.
“Today was good,” Brian said. “We did good.”
“We did do good,” I said. And we both knew good encompassed more than the ranch.
This day was not a last-meal indulgence, I told myself. It was a happiness to store away—for when things got bad. Or went from bad to worse or from worse to unbearable. As we’d been promised they would.
A happiness to pull her forward, back to the small pleasures of life. I’ll remind her of Whispers. Add it to the list of things she loved: ice cream, the geese in our backyard, the plum tree she tried to climb in Brooklyn, the Thanksgiving kite. Remember, I’ll tell her, how you loved the red diamond in the blue sky, remember how, when it fell and landed in the snow, such unlikely North Carolina snow, you ran to it like it was a lost or injured friend.
35
On a night not long after the tubies went in, Gracie was playing with a pair of My Little Ponies in the kitchen. She interrupted her
play to splay across the floor, eyes closed, silent and still. A pony dropped onto its side, near her head, unmoving.
“What are you doing?” I said.
“I’m being died,” she said. “Can you hear me talk?”
“What do you mean?” I said.
She looked up at me. “Was I talking before when I be died?”
“You didn’t be died, lovey.”
“Yes, I did.”
“Do you mean when you took the medicine that made you go to sleep when we put your tubes in?”
“When I be died, could you hear me talking?”
“You didn’t be died,” I said again, too sharp. Accusatory.
She gave me a look—what’s your problem?—and took her ponies elsewhere.
Having sensed my discomfort with the concept, the kids spent the evening playing a resurrection game by commanding various objects “to be died” and springing them back to life. They practiced on each other. “You die,” Gabe said to Gracie, matter-of-fact. She fell over. He chanted his magic phrase, “Flubby buzzy, flubby buzz!” Up she sat, reanimated. Oh, what fun.
That night at dinner, aiming for a little civilization, I put a flickering votive candle in the center of the table. Gabe was enthralled; he loved nothing more than to blow things out. I kept moving it away from him, and he kept blowing.
“Just put it away,” Brian said.
“No,” I said, “I like the light, it’s pretty, and he can learn to leave it alone.”
Gabe blew and blew until, from the other end of the table, he extinguished the flame. As it sputtered out he shouted, victorious, “It died!”
36
At the clinic, every morning, the kids ran straight toward the fish tank. Brian stopped at the gift shop for the Times. I ordered a latte from the old-timey pushcart vendor. Before going up to the fourth floor, we’d watch the kids run in circles around the open lobby or play the piano they were not supposed to touch. Any kind of life, if you live it long enough, becomes routine.
One day, in our second or third week into this regime, a girl about Gracie’s age got onto the elevator with us, also headed to the fourth floor. She had delicate bones beneath puffed skin, post-transplant. Her parents stood very still, with their girl between them. When she coughed, a sharp, deep bark, I looked at her with what I hoped was more concern than fear. Her mother gathered her closer and turned the girl’s head into her own leg to cough again. It was a startling sound, deep and incongruous from her small form.
Happiness--A Memoir Page 18