“She’s fine,” I said. Ramya smiled. I smiled. And then we cried.
As I was leaving, Deepak told me that his cousin was coming to accompany them on the ride home. “We were three coming down here,” he said. “And we would be only two going home.”
If what you’ve been is a mother or a father and your child is now gone, there is no word for who you are. If you lose a spouse, you’re a widow or a widower. But if you lose a child, you go on being a mother or a father. There is no word because we refuse to cede that much authority to the possibility. It is literally the indescribable pain. If we can’t call its name, it can’t come. Only it can.
50
Near the end of our time in Durham, Brian’s mom, Tasha, came for a visit. On the last night of her stay, we took her and the kids to a local place with a row of picnic tables set into a pretty little garden. Behind a curtain of wisteria, the children found a patch of dandelions.
“Gabe, these flowers are wishes,” Gracie said.
“Let’s eat wishes!”
“No, they are for blowing.”
Gracie gripped a stem and blew its wispy white crown. “I wish to be a pony, never anything but a pony.”
They began to romp around on all fours, pawing at the earth, tossing their heads in the air, touching their lips to the grass, nibbling. Their bowed necks, in the darkening light, formed twin pale bridges.
Tasha looked at them, then at us. “So she’s OK?”
“She’s OK,” Brian said.
“Then what the hell are you still doing here?”
Classic Tasha, straight to the point.
“We’re scared to leave,” Brian said. It was true; as scared as we’d been to come, we were almost as scared to leave. Duke was our security blanket.
“But she’s OK?” Tasha said again.
“Yeah, she’s OK.”
“So then,” Tasha said, “you two did good.”
* * *
In truth, the moment we knew Gracie was out of danger was invisible. We passed through it many times, without recognition. Transplant is like that. There are few clean borders. Your child is puffy and bald and in lots of pain, but the doctors send you home from the hospital anyway, with an injunction to avoid crowds. Your child regrows her hair, can tolerate a chat with more than two people at once, but a bad cold could still be her undoing.
Parents of perilously sick kids never stop being afraid, not even when their kid swims the English Channel or dances ballet with Baryshnikov or has twenty-three kids of their own. The other shoe is always above our heads, just out of reach, about to drop.
Likewise, returning to an intimate understanding with your partner after a long, fraying time doesn’t happen in a single instant. For Brian and me, it happened slowly, painfully, often imperceptibly over many days. Few of them in a row.
I do remember that Brian came home from a trip to New York with an unexpected gift. A necklace. A beautiful pearl-studded choker, unlike anything he’d ever bought me. Silver that looked and felt like lace, from the Metropolitan Museum of Art gift shop. Very precious, apropos of nothing. Apropos of everything.
Brian, who would beg me to tell him what I wanted on birthdays, at Christmas. Brian—who made notes in a little black book on food preferences the kids expressed or I did—took a risk.
He bought me something that said, I see you this way.
The necklace came with a note: You are my alpha and omega.
I cried as I put the necklace on. Wearing it, I felt elegant, of another time and place. Somewhere Old World and civilized, maybe Prague. Definitely not Durham. We went out to dinner at an intimate French place downtown, Vin Rouge.
“A man who buys a necklace like this for his mate probably believes they are held together by more than geography,” I said.
Brian touched my cheek with two fingertips, ran them lightly down my throat to the pearls. “Probably.”
We held on to one another’s legs under the table. I am yours, you are mine.
Between us was the first time we ever sat in a room together and I couldn’t look Brian in the eye, just smiled, hugely, stupidly, into my own lap; between us was the first time he kissed me on Twelfth Street, leaning in, shockingly, thrillingly confident, “I’m going to kiss you now,” the kiss of recognition, Oh, hello; between us was my walk, alone, in the hills behind the house where I grew up, with Brian’s tennis shoe in one hand and, in the other, the pregnancy stick announcing Gracie’s presence; between us was the moment he snatched the twenty-dollar bill out of my hand in the Cuban-Chinese restaurant, but also the moment he said on the phone, while I was in labor, “I love you,” as though five months of alienation could disappear, a tissue devoured by flame; between us was the first time he saw his daughter, at four months old, in her rosebud sack and cried, quietly, so as not to disturb her; between us was every one of Gracie’s screams, at every IV insertion, when he wasn’t there, and the one in her jugular vein when he was; between us was Brian’s forbearance with my lingering rage when we first reconciled and his joy in discovering I was pregnant with Gabe; Gabe in his bee boots, be a pony, tiger; Gabe, on our first day in Durham, standing beside the wide rail fence as cars whizzed past; Gabe’s yell of anarchy and self-invention, oolie ba aa!; between us was our terror that Gracie would never be fully well, and the willed belief that she already was. Between us was the grief for children we’d known who had died, who could never return, nor ever be forgotten. Between us was the future, who we would become as we grew older, as the kids left home, and also the future of the two small people we loved most, our aspirations for who they might become, the revelation of who they already were.
All of this reverberated inside the gaze we held for a long quiet time.
Brian lifted his wine, we clinked and pressed glass against glass, globe against globe. “To the end,” Brian said, “and the beginning.”
HOME
CODA
Not long after our transplant experience was over, totally over, or as over as it ever will be, Brian and I stayed at a lodge with a deck that cantilevers over Mt. Tamalpais, in Marin. Where I grew up. Where each of our children was born. Standing on the deck, alone in the dark and the fog that wraps Mt. Tam on summer nights, we kneeled. Him first, then me. We asked each other if we’d like to be married. The answer was, is, always, yes.
A year later, when the kids were five and three, respectively, we married at that same lodge, overlooking the ocean. Gracie was the ring bearer; Gabriel was the flower boy. At the crucial, aisle-walking moment, Gracie cried under pressure. Gabriel needed to be picked up midceremony. It was not nearly as orchestrated or as elegant as I’d envisioned, but it was beautiful.
We left Durham eleven years ago. And in all this time Gracie has been, and is, well. Cured. Which is the gift of our life: we can dream and wake and eat breakfast because our child lived. She lived.
Unlike many, many other children, she lived.
A truth I live with but don’t like to think about: I can name a child who died in every one of the sixteen rooms on our transplant unit.
I have no idea, still, how to make sense of this, except to pray, in repertory and for perpetuity, Thank you, I’m sorry, I’m sorry. Thank you. Thank you.
Gracie is fourteen. She has long, long auburn hair. Rapunzel hair, shiny and glossy. It hangs past her waist. She has a waist! Though you wouldn’t know it; she wears camo cargo pants and baggy plaid shirts. She has a sly sense of humor and an all-consuming crush on Captain Picard. She is a bookworm, who, at school, goes by her given name of Amelia. She is our late sleeper, our deep dreamer, our secret writer. Working, forever, on the best first sentence of a book she hopes to finish. “I want to be a writer,” she says, “if I’m good enough.”
Gabriel is twelve, he wears his hair in the same shag fringe bangs that the Beatles wore as they stepped off the plane in America in 1964. He adores John Lennon and Frank Gehry. His interest in the world knows no bounds. He is the same at twelve as he was at two; our exu
berant boy, spinning his million questions. If you could edit one song, change a line or a word or a tune, what would it be? If you could relive one minute of your life over and over again, which minute would you pick? If you could be the maker of something that is already made, what would you be the maker of?
Um, you.
We have accepted our luck. Our daughter and son. We could not earn them, we’ll never know if we deserve them, but we hold on with both hands. And still, we understand that nothing given is permanent. Not wealth or well-being, not sweet dreams or morning coffee. Not a daughter or a son, a husband, lover, friend, mother. Anything, everything, is up for grabs, can fly back from whence it came.
In 2012 Hurricane Sandy felled a tree in our yard. As the tree went down, a branch broke off, the wind lifted the branch and rotated it, midair, so that it struck the largest window in our house jagged end first, like a javelin. Glass shards flew through our bedroom; invisible splinters of glass slid into the drapes, the drawers, the deep recesses of the carpet, the soft soil of our potted plants. We cowered, all four of us, under a thick comforter on our bed. We were OK, but we were also reminded that what is whole can be made unwhole in the space of a breath.
A few months ago Gracie—dreamy girl, consummate reader—looked up from her book at the breakfast table and asked, “Would you really die to save me from dying?”
Gabriel paused his stream-of-consciousness chatter to make sure he was included. “Yeah, would you eat bullets?” Gabe, second-born child and sibling of a transplant survivor, is forever wondering whether his allotment of love measures up. Both of them want to know: Who do you love best? Who will you save first? Will you die for me? A terrible death? Underneath that, the bigger questions: Can you protect me? Will you find a way to keep me safe? Am I alone in this?
“Probably I would die for you,” I said, “especially if you said please.” They rolled their eyes. I should take their questions seriously. I should tell them the truth, that I’d do anything, anywhere, to save them. But then I’d have to admit the corollary truth: there are a host of things I can’t do. No one can.
Brian and I should be in a state of dazed grace, amazed at our luck, seven days a week, every hour of the day. We aren’t. If you sat us down, made us talk, scratched the surface, you would find it—the dumbstruck happiness. But we are also driving the kids to school, arguing over who gets enough time to write. Taking Gracie to acting class on Wednesday nights. Laundry, dinner, if we’re lucky, a kiss in the mud room.
We’re doing it all inefficiently and haphazardly, and with the full knowledge that it could have been otherwise.
We are doing this life, watching Gracie do hers, with the happiness that remains after you have leaned off the edge of the world into the black space beyond our atmosphere, breathed in the nothing—that thin, empty, sterile air that cannot nourish you—and then pulled back, restored to gravity, oxygen, old-growth trees, and the deep blue sea.
Gracie, for her part, takes her history in stride. Once, when she was eight, she said, “I was sick, but you wouldn’t know anything if I didn’t tell you. You would think I’m a normal kid. Unless you saw these.” She lifted her shirt to show us the two starfish on her chest. Scars from where the “tubies” once entered her body, the sole outward mark of what she went through. She doesn’t search for a swimsuit that covers them. She carries these blurry, blush pink stars embossed on her skin casually, as what they are: an affirmation of survival.
As relational as Gabe is, Gracie is quiet. She’s private. She often seems to be listening to herself on some subterranean plane.
I hope what she hears are directions for happiness; the happiness blueprint.
But I don’t think there is one. We find happiness, if we find it at all, on accident. We trip over it on our way somewhere else. It’s woven out of the oddest circumstances. Sometimes we’re engulfed by our senses: my God, what wine, what beautiful friends, and that smell of smoke, which sums up sexual giddiness, nostalgic longing, and primal well-being in one whiff. Other times it is a quiet happiness, a counterintuitive happiness.
The complicated joy of watching your children run away from you, through a gauntlet of parents on a Berkshire hilltop, assembled to say good-bye and invited to offer a benediction. The campers run through branching arms. “Laughter,” says one parent; “sleep,” calls another. “Belief in the bug’s life,” “birdsong,” “river play,” “friends,” “the unplugged mind,” “innocent romance.”
“No tick bites,” Brian whispers into my ear, “and no growing of any kind.”
“Happiness,” I shout, but too late.
Gracie and Gabriel, bearing their giant packs, their various scars, their own unshouted wishes, are past us already, cresting the hill. They can see what lies on the other side, and they don’t look back.
AUTHOR’S NOTE
The truth is an impossible undertaking. However, I took many notes along the journey described in these pages: first in the form of a series of letters to my unborn child and later as a blog. I’ve tried not to ascribe language, especially to children, unless I’d recorded it verbatim. In certain cases, I’ve elected to use pseudonyms and/or change identifying details. But I have not created composites. When I’ve written about a child, I know precisely who they are, whether or not I felt free to name them. I know the name of every child we cared for in Durham. And of every child who died there. I remember you.
A final thought/wish: Shortly after Gracie’s transplant, Brian’s sister was diagnosed with leukemia and required a stem cell transplant to survive. Unfortunately, Brian was not a match for Melinda in the way Gabriel was for Gracie, but a kind-hearted young man living near Los Angeles was. This stranger saved Melinda’s life; we can do that for one another. I urge anyone holding this book to register to become a bone marrow/stem cell donor. Registering is an easy, painless mouth swab, which might enable you to gift years of life without impairing your own health. Further information: BeTheMatch.org.
ACKNOWLEDGMENTS
Writing has the patina of a solitary art but anyone who has arrived at a finished manuscript knows it is the product of many minds, hands, eyes, and sensibilities. In this instance, I also owe thanks to the many people who helped us live the events described here, in order to write about them.
My mother, Jessica Flynn, and my brothers, Evan and Dylan Flynn, made a place for me back home when I needed one most.
A host of doctors and nurses helped Gracie survive her first five years of life. Their professionalism, medical ingenuity, and acts of compassion made the unbearable bearable. They include: Dr. Eric Scher and the staff of Marin General Hospital’s Neonatal and Pediatric Units; Dr. Marion Koerper at UCSF Medical Center; Dr. Stacia Kenet and Dr. Lindy Woodard at Pediatric Alternatives; Dr. Marc Seigel at NYU; Dr. Blanche Alter at the NIH; Dr. Joel Brochstein at Hackensack Medical Center; Dr. Sam Lux at Boston Children’s Hospital; and Dr. Joanne Kurtzberg and the entire team at Duke’s Pediatric Blood and Marrow Transplant Program. In particular, many of the nurses who cared for Gracie offered our family incalculable kindness (see Bobbie Caraher). Thank you doesn’t begin to express how we feel, but we are saying it every minute of every day.
We were carried through transplant, and beyond, by the many friends and family who formed a protective net. They include: Brian’s mother, Tasha Morton; Brian’s sister, Melinda Morton Illingworth, and her family; my father, Howard Harpham, and his wife, Louise Harpham; my stepmother, Mary Harpham (continuously whispering, write about it); my sister, Holly Rotlewicz, and stepsiblings Brian Evans, Debbie Evans, and Jason Evans, sunny boy, too soon gone; our two Greek columns of caring, the Manolis and Karsant families; Suzi Adams and David Kleiman; Mark Levinson and Melissa Brown; David and Leanne Kumin; Kristi Spessard and family; Howie and Kristen Parnes; Steve and Kathy Sears; Anne and Mae Woods, first friends of wellness; Virginia Veach and Leslie Gibson, who, respectively, led us in and led us out; and our beloved communities of Sarah Lawrence College, Dissent magazine, the Cre
ative Arts Team, and World College West.
Rita Delfiner and the editorial staff of the New York Post made Gracie’s plight clear to readers, inspiring many New Yorkers to donate to the medical care of a girl they’d never met. Children’s Organ Transplant Association ably administered that fund.
Sometimes a heroic force in life doesn’t appear on the page: Denise Rubinfeld put her post-college plans on hold to accompany our family to Durham and care for Gabriel with humor and love. At twenty-two, and without kids of her own, she taught me a lot about mothering. Nadia and Ne’dine Batts, twins and kind souls, also cared for Gabriel and Gracie in Durham. As does Amelia Martin, our satellite sister/daughter, who brings laughter and insight to our table.
We are so grateful for two rare, nurturing environments—the Early Childhood Center at Sarah Lawrence College and Blue Rock School of West Nyack—where Gracie and Gabriel learned to be ordinary again, in the best possible way.
The artistry of three teachers and path-lighters—Deborah Merola, Ruth Zaporah, and Deb Margolin—has had a profound effect on how I understand personhood, theater, words, story, and creative invention. Though they didn’t read drafts of this manuscript, they helped write it.
Cassie Tunick’s poetic imagination and her reliance on the unconscious to conjure our best selves have been inspiring and sustaining me since we were ten. And are, I hope, alive in these pages.
Cathleen Medwick kindly made room at More magazine for early versions of this material. Kim Larsen, Penny Wolfson, Kate Reynolds, and Barbara Feinberg formed a writing group whose liberating ethos was: Write everything, you can take it out later. In particular, Barbara’s beautiful prose, devoted readership, and contagious habit of sitting down to write daily kept me in motion.
Kristy Davis touched this manuscript with a scythe of coherence that cut away the dead wood and gently demanded that I graft in truer feeling. It would not be this book without her.
Happiness--A Memoir Page 28