My mom flies out too, and I revel in the sight of my mom and my dad on either side of Gracie’s bed, each with a hand on her. A complete genetic circle. They have been divorced for thirty-six years, but they both want what is best for the girl between them.
Gabe spends the whole day saying, to one grandparent or another, “Is mine birthday!” It’s Lincoln’s birthday too, for that matter, and Darwin’s.
But they answer, “Gabriel, it is your birthday!”
We hold our party in the Connection, all clad in the canary yellow gowns of contamination containment. Gabriel is habituated to these papery gowns, the smallest of which billows around him as he walks, a diaphanous cloud.
Gabe pings from gift to gift like a drunk, ripping, tearing, shaking, dropping, tossing, ripping some more. A yellow blur of manic happiness, high on the surplus of ambient anxiety and spirit of celebration.
I try to collar him.
Brian says, “He’s OK. He’s opening presents Gabe style.”
I feel, once more, corrected. “Wow, Brian. Where are you getting all this incredible parental insight? Books? Meditation? A secret life coach you call in California?”
My mom looks up, startled by my tone. How mad can I be? Gracie is better, Gabriel is two. I’m eating a delicious Vietnamese salad. The bite in my voice surprises even me.
Later, as we stuff shredded gift wrap into a trash bag, my mom offers to stay with Gracie in the hospital that night so Brian and I can spend the night together at home. A total rarity. It’s February 12, a few days shy of Valentine’s.
We take the back way home, through the country roads. I’m glad Gabe is not here to lament the trees’ dislike of him. As we turn a corner, a crescent moon lies on the horizon line. A rind of new moon, slim and ghostly and seemingly self-lit. It is a cradle, reclining on the land, close enough to walk to. We could climb in and fall asleep. I think of suggesting to Brian that we stop the car and stroll to the moon. But as soon as I have the thought, I remember a time in California when I’d said, “Look, a full moon!” And he’d replied, “Not yet, it’s only almost full.”
We drive along in silence; neither of us mentions the extraordinary moon touching the ground. Nor do we talk about Gabriel being two or Gracie having engrafted. We don’t talk about how scared we were during the VOD days. We don’t talk about the children’s memorial service or about the latest child to go upstairs to the vent, a little boy with light blue liquid eyes that seemed never to blink. We don’t talk about how much we miss each other or how stressful it’s been to have our parents visiting, even when it’s been helpful. We don’t even talk about Jack Bauer.
When we get home we change Gabriel into his pajamas and lay him down in his crib to dream birthday dreams. Soon he’ll be sharing this room with Gracie. We hope. We say nothing about this either.
We brush our teeth, climb under the covers, in silence. It is obvious what should happen; it has been weeks. Maybe months. I’ve lost track. But it is equally obvious this is not going to happen. I turn away, but let my foot drift over to touch Brian, the smallest of conciliatory gestures. He doesn’t move away or toward me; just lets my foot rest against his. Toes to toes, the best we can do. Brian turns to face me. “Alone is one way to get through adversity, but is it the best way?” This formulation is a joke, something we say, That’s one way to … whatever the thing is … but is it the best way? No response from me. No giggle, no touch. Silence.
“In hard times,” Brian says, “people typically do better when they huddle together for warmth.”
“Who are you, Shackleton? I know how to cope with adversity, Brian, but thanks for the lesson.”
This silences us both. I have no idea why I’m lashing out. Gracie is OK, she’s sleeping not six miles away. But I am bizarrely furious. Fury in search of an object.
We’ve been dangled by our ankles while children dropped around us; children fell. Surely there is someone to blame.
DAY 40
I spend Valentine’s Day reading to Gracie under a string of diffuse heart lights, a gift from Bobbie, who’d noticed Gracie’s growing light sensitivity. Yet another side effect. We hang the hearts above her bed, and they soften and rosy the room into twilight.
Dr. K comes in the next morning, “Her numbers look great,” she says. “She’s ready.”
“For what?” I ask. I’m afraid she means some new treatment.
Dr. K looks amused. “To go home,” she says. “She’s ready to go home.”
I start to cry. Dr. K, who knows the rhetic count and the hemoglobin and the liver function numbers of every kid under her care, does not know how to respond.
“This is good news,” she says.
“I know,” I say, and cry a little more. For once, I don’t apologize for crying.
Gracie says, “Mama, why are you sad?”
“I’m so happy I’m crying,” I say.
“Mama,” she says, and leaves it at that. There is nothing, apparently, one can say to someone as daft as I am.
I walk out to the parents’ lounge to call Brian. “We’re being discharged.”
“That is beautiful news,” he says, and I can hear the catch in his voice too. This news means more to us two than to anyone else on earth.
Gracie spends the day before discharge watching, for the umpteenth time, the Wizard of Oz. Dorothy goes on an arduous journey populated with allies and terrifying enemies. Dorothy collapses in a poppy field and gives up. Dorothy makes it home, where she’s told it’s all been a dream. Gracie calls the cowardly lion “the courage lion.” He’s her favorite. At the end she turns to us with excitement and says, “The courage lion’s not afraid of anything!”
Well …
She arches her eyebrows and turns her hands palm up. “Are they living? Actually?”
“If they are real,” I say, “what do you think the courage lion is doing right this second?”
She gives me a withering look. “Brushing him teeth.”
Can a kid who can’t get her possessive pronouns straight be employing irony?
“He could be brushing him teeth,” I say. “He could be brushing them scientifically.” A phrase Brian uses to get Gabe to brush.
“I don’t know because I can’t see him,” Gracie says. I love her pragmatic, dogged streak. Just tell me, damn it—is he or isn’t he real?
DAY 44 (DISCHARGE DAY)
Gracie wakes up nervous, her first sentence, “Is Bobbie gonna be at my good-bye?” Leaving Bobbie is terrifying. Bobbie keeps her safe. Bobbie knows how to handle things. Bobbie has bubbles and juice and secret ways to make the pain stop. We strip the room in anticipation. All the cards and toys and accumulated clutter are gone. We leave the string of heart lights in place until the last. “Can I bring the hearts home?” Gracie asks. “Will they work there?”
Bobbie arrives with her air of mischief, her cat-eye glasses, her calm, her humor. How are we going to keep recovering without her?
“OK, Gracie girl, get ready to say good-bye to Tough Guy,” Bobbie says.
Gracie shoots us a smile. “Bobbie came.”
“Of course I came,” Bobbie says. “I have to make sure you don’t steal my machines!”
Gracie giggles, her lilting, air-burst giggle.
“Gracie, this is gonna be the last time I unhook you from Tough Guy. After this, you’ll be off leash forever. Are you ready?”
Gracie gives a solemn nod.
Bobbie unscrews the plastic IV tubes that lead from Tough Guy to Gracie’s chest catheter. She rubs down the catheter ends with alcohol, flushes the lines with saline and heparin, and recaps them. I watch intently; this will be my job at home, and keeping bacteria out of the lines is crucial. Any bacteria that make it into the line have direct access to Gracie’s heart.
Gracie looks up at Bobbie. “Good job,” she says, and this phrase seems to encompass everything Bobbie has done for her over the last fifty-four days. The gum she made appear out of thin air, the bubbly apple juice and plastic champa
gne flutes on New Year’s Eve, the morphine drip with its magic red button, the heart lights. Bobbie, the mother of four sons, has made Gracie feel like the most important young person in her life.
Bobbie wheels Tough Guy, now an independent operator, to the door. Before she pushes him outside, she pauses and asks, “Gracie, do you have any last words for your friend?”
Gracie looks Tough Guy up and down. “Be good to the next girl,” she says.
I expect leaving the unit to be anticlimactic, the way big change sometimes streams by in a slew of undifferentiated details. But I’ve forgotten about the “confetti parade.” When a family leaves the unit, staff and any patients well enough to stand line the halls and cheer and throw confetti.
This strikes me as a form of heroism. Patients and their families celebrating someone leaving, as they stay behind. We bow our heads under the tiny colored disks of paper that fly toward us as we walk, as the other patients clap and cheer. Gracie grins and grins and grins, and waves her regal wave, devouring the moment.
Ramya stands in the doorway of their corner room. She tosses her handful of confetti gently toward Gracie’s knees and leans down to say good-bye. “Have fun at home, Gracie. We will meet you there.” She stands up, and we hug.
Behind her, as we embrace, I see baby Varun asleep on his bed. He is hooked up to all the standard stuff, wires and cords and IVs. And at the center of the equipment, the boy. Dark headed, huge-eyed Varun, dreaming his one-year-old’s dream. I imagine he’s dreaming of his mother’s neck and hair, the nest in which he spends each day, Ramya’s hand cupping the back of his head.
I don’t want to say good-bye to Ramya, and at the same time, I can’t wait to get the hell out of there.
In the scrub room I examine Gracie, free of Tough Guy, free to move around unfettered in her pink sneakers and street clothes. I look at her closely. She is almost normal. Not too swollen, not too hairy, not yet. That would come later, with the steroids. Now, she looks pleasingly like herself, except bald. But bald in a nice way; her exposed skin is a delicate, translucent pink over a skull that is perfectly round. A few pastel pieces of confetti cling to the crown of her head, the ridge of her ears. She is a human cupcake of a girl.
The moment we step outside the ward she is disoriented, a recent parolee, dazed by the sunlight. She usually had a great sense of direction, but she’s been on the inside almost two months. She has no memory of which way the elevator lies. And she won’t let us guide her.
As much as Brian and I are dying to get out of here—quick before someone changes their mind!—we try to be patient as she leads us from one random hallway to another. When we make it down to the lobby at last, she asks where the Christmas tree went and why there is no snow outside. She’s an incredulous Rip Van Winkle. At the fish tank she searches for a misshapen goldfish she’d once claimed as her own. When he, or a passable substitute, appears she shouts, “Look! My orange fish remembers me!”
She moves to the lobby fountain, a massive structure of cascading tiers. She points to a piece of bark in a nearby planter. “Can I touch it?” Can you wipe bark with an antibacterial wipe? “If you put a glove on, lovey,” I say. She puts the glove on without complaint and picks up the piece of bark, studying the fountain. She throws the bark into the top tier and watches it swirl down to her level, then she throws it to the top again and waits for it to return to her, over and over.
Finally we get her outside; she looks up and around. “I’m out,” she says, and shivers. I try to get her to put on her sweater, but she doesn’t want anything weighing her down. As Brian gets the car, I squeeze her hand in a quick rhythmic pattern. She squeezes back, but barely. She’s distracted by all the cars, the sounds of traffic, of birds, the dozens of conversations taking place around us. Her world was so small for so long. And now it is tantalizingly big again. A bus pulls up across the street. She pulls me, leaning her full weight against the anchor of my hand, “Come on, Mom,” she says, “let’s take the bus.”
It scares me how possible this seems—heading off for a new life together, just us two. Though there were many people around us, Gracie and I had done this—get well—together. Brian was there; of course he was there. But in some fundamental way, pulling her through illness had felt like a two-person dance, or I’d made it one.
The mom/daughter blueprint of my childhood was reexerting itself, flexing its muscle. Meanwhile Brian was coming around with the car. Gabriel was at the apartment waiting for us, excited and nervous to see his sister again.
Time to shake off the old architecture. Time to reconstitute ourselves into a four-person tribe. Crooked as we might be.
Time, too, to stop counting. There will be more days until we can go truly home, to New York. There will be days and days. The chance that we’ll be released home on Day 100, as the doctors implied if not promised, is microscopic. That’s just a carrot the doctors dangle to keep you moving. And that’s fine by us; we’re in no rush. This day is gift enough.
43
Gabriel looked Gracie up and down, “Yacie?” During her stay in the hospital, he’d watched her transform physically. But this was home; here she should look like herself, but didn’t. “Will Yacie sleep in my room?” He sounded half pleased, half spooked at the prospect. “Gabe,” Gracie said, “you’re sleeping in my room.” Brian leaned into me. “It’s like when the mafia boss gets out of prison and takes over his turf again, and the second in command doesn’t want to give it back.”
But the hierarchy of birth order was quickly restored: on the way to their room Gabe stepped into all the places she stepped, touched every object she touched.
While they played, Brian and I set up a mini–staging area for the multiple medications we needed to infuse via her pump, at precise times throughout the day. The protocol was so complex we’d bought a white board to track dosage, time, and temperature. We placed each medicine on a separate tray with its attendant tubing and directions. Some of the meds had to be refrigerated, then brought to room temperature so they wouldn’t chill her heart during infusion. One of the medications could only be disposed of, legally, in a Hazmat container.
I was the designated med-giver. Every morning and night as I hooked her up, I would pray in earnest, Please God, let me not fuck it up.
That first night, they took a bath together, Gracie’s tubes taped to her shoulder so they wouldn’t get wet. Post-bath, in their pajamas, they smelled like French-milled soap and sourdough bread, almost too good to bear. Side by side, they brushed their teeth, which Gabriel hated. Brian coaxed him by saying, “Let’s just brush a select few of your teeth, scientifically.”
“Scien-tif-ically?” Gabe said.
“So very scientifically,” Brian said. Gabe brushed.
I cleaned Gracie’s lines with alcohol, attached the pump, and started her infusion. Gabe, flaunting his scientifically fresh teeth, climbed in beside her in the double bed they would share. We told them a story as they drifted off, reveling in the way we could lift a plump hand and lay it on a plump cheek without waking them. Reveling in the way their leaven bodies rose and fell in tandem. Two kids breathing side by side; ordinary and miraculous.
A few hours later, Gracie appeared in our room, clutching her pump under one arm. We’d disconnected it as she slept but she hadn’t noticed. She carried it carefully; her little sidekick. Seeing her attend to the pump, even when it was not connected to her, moved me. It was a friend she wouldn’t leave behind. I reached for it; she passed it to me carefully with two hands. “We unhooked you already,” I said. She gave a wriggle of freedom. “I’m a girl with no pump!”
* * *
Gracie was safe here, five miles from Duke, but we were afraid to travel farther than that. Her marrow still wasn’t yet making sufficient white cells to fight off an infection or a virus. Until her immune system rematerialized, we were tethered to Durham. And, most crucially, we weren’t allowed anywhere people congregated, anyplace germs could ride the current of a central ventilation
system into her vulnerable lungs.
But, if we lived within our limits, we could impersonate a normal family: stroll around the apartment complex, visit the local outdoor mall to throw coins in the fountain, sit beside the nearby lake at dusk, when all the germy kids were inside eating dinner.
If our grazing lands were limited, at least we were together. Sometimes Gabe was so overcome with feeling for Gracie that he’d throw his arms around her from behind and squeeze, “My sissy.” When Gracie’s infusion finished and the pump clicked off, she’d often slip out of her bed and into ours where she’d burrow between Brian and me, touching my face with the back of one hand, touching Brian’s chest with a toe. Body as bridge; this had always been her way. When I’d nursed her as an infant, if Brian sat down near us, she would stretch her legs and feet to make contact with him.
Gabe would usually follow her into our room and clamber on top of us three, spread-eagle. This was classic Gabe: pin your loved ones in place. Protest was useless, Gabe’s capacity for bliss was irresistible. We’d sleep like this, in Gabe’s lumpy puppy pile, for hours.
One night, when the kids failed to crash our room, Brian got up to check on them near dawn. He woke me with a whisper and waved me into their doorway, “Come see this.” She was curved around a pillow; he was tangled in a sheet. She was in feety pajamas; he was in his diaper and his bee boots. And, they were holding hands. An outlandish, family movie gesture; her fingers curled around his thumb. They didn’t hear us, didn’t stir. They were busy doing the covert work children do at night: the multiplication of cells, the silent, unstoppable growth, the hatching of private plans.
44
At the end of our first week “home,” Gracie sat at the dining room table playing with shells Suzi and David had sent her from a beach in Thailand. It was an improvised, high-stakes opera.
A pink shell sang, with gravitas, “We give you our babies.”
A dark shell gasped, incredulous, “You give us your babies?!”
Happiness--A Memoir Page 25