She herself had lain awake half the night, filled with loathing for herself, for what she’d done to her family, in the name of destiny, fate. The words she’d wanted to use. Grace had stared at her son, this giant boy, his eyelashes wet with tears, and knew that her affair with Noah hadn’t been about destiny at all, but about desperation and a smallness of spirit and a bone-deep selfishness.
What kind of woman, what kind of mother , leaves her children—her dying child—on Christmas Eve?
On the couch, Erin stirred, kicking her blanket to the side. Grace leaned forward and tucked it back around her feet. She heard Max and Stephen in the garage, stomping the snow from their boots. She swallowed hard. There were so many ways to make mistakes, she had wanted Max to understand, and there were so many choices and in one of them was some minuscule, barely perceptible detail that would end up forever altering your life. She’d learned in graduate school the ways tragedy arrives in such ridiculously small occur- rences. African sleeping sickness, caused by a single bite from a tsetse fly, which is attracted to bright hues so that something as innocuous as your choice of wardrobe—the color of your shirt—could be the difference between sickness and health.
Or a shift of temperature somewhere far below the equator and ocean currents were affected halfway around the world, causing the southwestern United States to endure a warmer, rainier spring. The piñon trees in that area consequently produce a bumper crop of nuts, and this, in turn, led to an explosion in the population of deer mice, and more deer mice equaled more contact with humans—which often equaled a greater chance that a rare and deadly form of the hanta virus would be spread. Or somewhere in Seattle, hamburgers cooked not quite long enough, a few seconds maybe, and four children die. This was what was truly horrific, Grace knew. It wasn’t only the tragedy itself but how preventable it all could have been. An airline flying into a building: if the weather had only been less perfect, the sky not quite so blue, the sun not as bright. The very beauty of the morning contributing to all the horror that followed.
The list was endless: The 1976 outbreak of Legionnaires’ disease in the Philadelphia Bellevue Stratford, where the bacterium was carried through the hotel’s air conditioning system so that those who congregated in the lobby, where there were more ducts, were more likely to become infected. And why had they congregated there? Perhaps they were more gregarious. Or perhaps they didn’t know the city well and so lingered in the lobby, reading brochures and talking to the bellhops. Maybe they were lonely. Maybe they didn’t want to return to their room. Something that simple. Or people sleep together once and a deadly virus is passed on. Every encounter, every breath, every choice, is enough to alter your life.
It was as random, she thought, as genetics itself, the plot of anyone’s life written not so much in the genes but in their mutations, the mistakes and accidents that never should have been. A switch of the 46th base of chromosome 5 and a person was more susceptible to asthma, something as fundamental as their breathing forever altered. Or the deletion of one specific base, the 6,174th, on one specific gene in one specific chromosome, the 13th, and breast cancer became more likely. With mitochondrial disease, all it took was a single mutation in any one of the over 16,000 base pairs that comprised its DNA. It seemed wrong, was wrong. One mutation out of thousands, a spelling error, for God’s sake, a typo. She stared at the tree and imagined a string of Christmas bulbs, how if one light is burned out, the entire string remains dark. It should have been more complicated, she thought wearily, as if complexity somehow mitigated the damage or at least made it more understandable. It didn’t.
And in the end, that single minuscule accident wasn’t so different, was it, from a boy, whose name even her grandfather no longer remembered, getting the flu sixty-one years before, which meant that his buddy covered for him at work and consequently met a redheaded dancer with whom he fell in love. A fluke. A boy gets the flu or maybe just a bad cold, and a week later his buddy is married, and that one impossibly tiny week spirals into the fifty-nine years of marriage and four children and then grandchildren. Entire generations.
Or a boy gets a homework assignment, one of the thousands of similar assignments he’ll get all through school, and he decides, for no particular reason, to write about birds.
A woman wakes in the night and sends an e-mail she never should have written.
A girl, barely out of college, makes a phone call to Child Protective Services.
The air we breathe is a mistake, she thought, caused by ancient bacteria: a random mutation somewhere down the evolutionary line and the whole process of photosynthesis began.
Forty-One
The four of them had almost finished the puzzle by late afternoon on New Year’s Eve. Max had found a company on the Internet that turned photos into high-quality jigsaws. And so the family puzzle was Jack as a baby in a little red-and-green plaid sport coat and bow-tie, bald as a peanut.
“I don’t know about reading last year’s resolutions,” Grace had said earlier to Stephen. She was in the kitchen slicing pumpkin bread, then placing it into a cloth-lined basket. “Maybe we should just start fresh.”
Stephen nodded. “Do you remember Jack’s resolution?”
She smiled without turning around. Already the snow that had fallen a few days before had melted. The late afternoon sun bled through the low clouds and spilled across the horizon, coloring the lake a bright fiery pink. From upstairs came the squeak and groan of Erin playing “Let’s see” in the tub. Grace rested the edge of the bread knife against the counter. “He was resolved to get a Shrek video and, to quote, ‘let Mama give me two cookies for dessert instead of one,’ and to go to the rocket place—”
“Cape Canaveral,” Stephen said. “I tell myself that he did go there, in a way.”
Grace stared wistfully across the lake. “I tell myself the same thing.”
Max slapped the second-to-last puzzle piece into place, then Erin put in the final one. The room smelled of pine and wood smoke, of cranberry-scented candles.
“I can’t believe you actually dressed Jack like this,” Max said, grabbing another square of pumpkin bread.
Stephen cocked an eyebrow at his son “You ever see some of the outfits your mother had for you?”
“Oh, but Max was adorable!” Grace protested.
“Yeah, those little-boy-blue shorts did wonders for my image, Mom!”
“You were a toddler.” She smiled at him. “You didn’t have an image.” She glanced at his face in the flickering light, grateful for the sound of his laughter.
“A toddler.” He rolled his eyes. “I was in junior high.”
“You were?” Erin squealed.
“No,” Grace laughed. “He was not.” She shook her head at the memory. When she looked up, Stephen was watching her. He held her gaze. Light from the Christmas candles that lined the edge of the mantel elongated his face and shadowed his eyes. Her children’s father, she thought. Her husband. The phrase pulsed inside her, and for a moment, she couldn’t speak, could barely swallow.
And then Max said, “What about the time he mooned us at the dinner table?”
“Oh my God,” Grace said, “Why did he anyway? I can’t believe I told the M.A.M.A. group about that.”
“What?” Stephen laughed. “You’re kidding?”
Grace shrugged. “It just seemed so, so Jack.”
“It was,” Stephen said. “But the real question, Max, is who taught him that to begin with?”
“I didn’t! I swear!” But Max couldn’t even get out the words without laughing.
Erin giggled. “That was so funny.”
“It was not!” Grace said. “It was disgusting. We were in the middle of dinner.”
“Remember how he thought candy canes were Js?” Erin said.
“Well, they are,” Grace said. “J-candy.”
“He used to get so mad when we hung them on the tree ’cause he said they were upside-down.”
“What about when he was jumping
in his crib and he jumped over the edge?”
“Or how he used to say he wanted to be an astro-nut?”
“Oh, he was an astro-nut, all right.”
After the kids went to bed, Grace and Stephen stayed up for a while, staring at the festivities on TV in Times Square. It seemed sad. How it just went on—life and routine—no matter what occurred in the world: terrorist attacks and wars and people dying every day. A ball dropping. A countdown. Another year pitching toward its end, sliding down the steep incline of all that had happened.
Outside, it began to rain, and Grace dozed off, her head back, leaning against Stephen’s shoulder, his arm around her. Even in her sleep, his heartbeat sounded in her ear, a steady unwavering cadence that went on and on.
Epilogue
What Survives
Speaking of marvels, I am alive
together with you, when I might have been
alive with anyone under the sun…
.……..
the odds against us are endless,
our chances of being alive together
statistically nonexistent;
still we have made it…
—Lisel Mueller, “Alive Together,” New and Selected Poems
What Survives
What will survive of us is love.
Philip Larkin
Even at the biological level of cells, the dominant story of our lives is one of loss and rebuilding. By the time we are born, 90 percent of our cells have already been killed off, and in the first few years of our lives, connections between the synapses in the brain will be forever lost, replaced with new ones. For as long as we are alive, our cells will continue to divide—four million times every second—so that by the time we die, every cell in our body will have been replaced hundreds, thousands, of times. Nothing about us is permanent, each of us, as naturalist Loren Eisley writes, a “statistical possibility around which hover a million other lives never destined to be born.”
What, then, survives?
Nothing.
And everything.
Think of how, before an embryo ever implants itself in the uterus, the probability of its surviving to birth is no more than 30 percent. Out of all conceptions 10 to 15 percent have a chromosomal abnormality, and of these fetuses, more than two-thirds never survive to term. And yet every day and against all odds, children are born with devastating illnesses. And every day and against all odds, these children survive, even flourish. They dream of going to the moon or becoming a Power Ranger, a chess champion, a ballerina.
Nothing.
And everything.
Heat left over from the Big Bang is still aglow in the universe, and dinosaur eggs that eighty million years ago were close to hatching, are found fully fossilized and intact. Buried beneath layers of Greenland ice is volcanic ash fromKrakatau and lead pollution from ancient Roman smelters. At 138 feet down is snow dating from the Civil War; 2,500 feet down, snow from the days of Plato. Plants grow from rocks or volcanic soil. A willow tree can grow from just a cutting. The surface of Mars still carries traces of liquid water now gone, enough water to have filled two Lake Eries, the very lake where millions of years into the future a seventeen-year-old girl would fall in love. “Hey you.”
What survives? Everything you ever heard or saw or felt or dreamed: the expression on Stephen’s face the first time he held Erin. A daughter. Certain words or facts: semipalmated; Munchausen’s. The farther two quarks move away from each other, the more fiercely they are pulled back together The final words, intaglio’d into stone at the Witch’s Memorial, of those women who were hanged over three hundred years ago in a small New England town. But he bid me tell you that you might look to unnatural things for the cause of it. The sound of your son’s laughter. Mitochondria, those ancient bacteria. Or red hair, blue eyes.
Whenever you read a book or scan your e-mail or watch on TV as buildings topple endlessly to the ground, the experience causes physical changes in your brain. New memories are formed that will forever alter how you see the world, and though we may forget the old memories, nothing is ever lost.
The smell of pumpkin bread on New Year’s Eve.
Your name is my flight song.
A child crying: Stay me!
Noah, is that you?
The taste of butter-pecan ice cream and the smell of mint in the kitchen of a yellow beach house in a seaside town in Delaware and a glass jar full of questions printed on bright scraps of paper: If you could eliminate one color from the spectrum, what would it be? If you could give rain a scent, of what would it smell?
What survives? By placing special electrodes into the parts of the brain that control memory, physicians can now stimulate recall in an 85-year-old so specifically that he can quote verbatim a newspaper article read half a century earlier. Think of birds flying thousands of miles to a home they’ve known only in memory, of heliotropic plants, whose leaves unfurl and close in conjunction with the rising and setting of the sun even when those plants are kept in darkness. Oysters, taken from the ocean and set in a pan of seawater, still open and close their shells in time with tides they no longer feel. And cells of the heart, alone in a petri dish, continue to beat.
What survives? Glance up at a red-throated loon, a species nearly twenty million years old, as it stitches together the brilliant blue sky of a perfect autumn morning. Is anything ever really lost? Exactly 2,800 words, spoken by the firefighters climbing into the South Tower, still exist on a dispatcher’s tape. And business cards, broken sculptures, the bent stairwell sign from the 102nd floor. A tin of melted coins. Four autographed baseballs. Shoes, wedding rings, voices on cell phones and answering machines.
What survives? And who and why? How is it that a 110-story building can collapse in on itself, pulverizing fire trucks, cement stairwells, and people, and yet workers, in the aftermath, will find a pane of glass perfectly intact? Or bread dough sitting on a cutting board, still bearing the imprint of someone’s fingers? A menu from the dining hall of Deutsche Bank listing the breakfast specials for that morning: smoked-salmon omelets, chocolate-filled pancakes. A yo-yo, a tube of pink lipstick, a half-eaten doughnut. The beaded party dress that had hung in one of the Plaza’s boutique windows. Someone’s résumé, a lottery ticket. Watches—still telling time.
And children. In the months following that horrible morning, over fifty children would be born to widows of September 11, the first one only two days later. In his name, Farqad, which means “star,” does his father live on, watching from above? Another father survives in his daughter’s cleft chin, another in his son’s big feet, another in the name, Alexis,that he chose months before she was born, and months before he died.
What survives? Names on the toys donated to hospital playrooms—in memory of—or on walls or quilts or in the “Portraits of Grief” that the nation read that autumn. On a wall in Washington, D.C. The color yellow and French fries served in a red beach bucket. A Wednesday night in 1941 and the fifty-nine-year marriage that blazed cometlike through the generations. A conch shell found along the shoreline, perfectly intact.
Nothing.
And everything.
Did you know that except for hydrogen, all the atoms that make us up—the calcium in our bones and iron in our blood, the carbon in our brains—were manufactured in red giant stars thousands of light years away in time and space? Did you know that water created billions of years ago still exists? That perhaps this very water is in our blood now, and that one day it will form a cloud, or that years before we were born, it lived within a glacier? Did you know that memories are forms of energy and so can never be destroyed, and that grief will one day become love and that love will eventually become hope?
Did you know?
Acknowledgments
My wonderful nieces and nephews have changed my life, changed me, in myriad ways. My writing too is deeper and more multifaceted because of the person these four children have allowed me to become. To them more thanks than I know how to express.
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To the many women who have been falsely accused of Munchausen Syndrome by Proxy and who so generously, albeit guardedly, shared their stories with me in letters, e-mails, and phone calls. I could not have written this book without your help.
To those who suffer from mitochondrial disease and/or those who love someone who suffers from it, there are no words to express what you have taught me about resilience and hope and the importance of telling even the most painful stories. Behind them lie innumerable moments of beauty, courage, and grace.
To the writers and editors who have donated their time, energy and talent to the annual “Writers at the Beach: Pure Sea Glass” writing conference in an effort to raise both money for and awareness of mitochondrial disease, thank you for reminding me that stories really do change lives. I have watched it happen. In just two years, there is more awareness of this disease in my little state of Delaware than I could have imagined.
To the staff at Booksandcoffee in Dewey Beach, Delaware, especially Terry Lake and Debby Creasy, who not only gave me a wonderful setting in which to write The Life You Longed For, but who also offered me plenty of coffee, encouragement, and enthusiasm—all equally necessary.
To the participants of the Rehoboth Beach Writers’ Guild Free Writes! You have taught me anew what first brought me to writing over twenty years ago: there is so much joy in the small moments of success, so much joy simply in showing up each day, pen in hand, ready to take the leap.
To my friends Gail Comorat and Anne Colwell, I don’t know where to begin. Your own talent as writers is so much a part of The Life You Longed For. Your insights into the characters, your astute questions, your numerous comments on draft after draft have been invaluable. As has your friendship, which I truly cherish.
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