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 Creative 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.