Grace's son Jack is a miracle. At three years old, he's fighting a mysterious, deadly disease that his doctors predicted would kill him as a baby. Even though it was determined to be mitochondrial disease, the little-known illness remains a mystery to medicine. Grace has sat by his bedside every minute he has been in the hospital, questioned every diagnosis, every medicine even poring over medical journals and books at home late into the night. To the world, Grace's fierce dedication is the sole reason for her son's survival. But someone suspects that perhaps Jack's disease is not what it seems.
When an allegation of Munchausen Syndrome by Proxy is leveled against Grace, she begins to live in constant suspicion of everyone from the doctors and nurses surrounding her son in the hospital to her own husband. Who could possibly think that she has been purposely making her son ill to gain attention for herself?
Although her husband believes their life is exactly as it seems to the outside world, Grace knows differently. She is harboring a secret the adulterous affair she's having with her first love. But perhaps her biggest betrayal of all is her shameful uncertainty about whether she's chosen the right path, the right husband, the right life.
In this compelling and heartbreaking novel, critically acclaimed author Maribeth Fischer addresses how the choices we made yesterday can affect everything that lies before us.
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Christmas Eve, 2000.
The gray-hued landscape of the Pine Barrens blurred by as Grace drove, dark spindly trunks of pine trees dissolving into thin gray branches, sienna-tinged against the colorless sky. She was supposed to be last-minute Christmas shopping but had realized the night before that she was finished. And the house was clean, the presents were wrapped, her mother had already agreed to babysit. Which meant that Grace was free. For the entire day, if she wanted. And she did.
The two-lane road was nearly empty, nothing on either side of it but straggly scrubland, interrupted now and then by a sagging farmhouse. Wind buffeted the car, wrenching the steering wheel that Grace held in one hand. The other held her Starbucks coffee and not just coffee, but a venti cappuccino, because with the whole day, she'd had time for this too. She exhaled a long breath and smiled, regarding her reflection in the rearview mirror: gray eyes, thick shoulder-length auburn hair, and today, for Noah, lipstick. "Coral spice" or "spicy coral" or...she glanced again at her reflection, felt her heart cartwheel in her chest. People told her that she didn't look thirty-seven. And today, with all this time no doctor appointments for Jack or driving Max to hockey practice or Erin to the Y for swim lessons Grace didn't feel anywhere close to thirty-seven. More like seventeen, she thought, the age she had been the summer she met Noah.
"Do you ever wonder why this happened?" she asked him a few weeks ago. This: their meeting again after twenty years, falling in love.
"That's it?" Already something in her was retreating, burrowing away from him.
He squeezed her tighter against his chest. "Hey you, get back here."
Hey you. She tilted her head up to look at him. His face was backlit by gold winter light. Through the windows behind them, the sun was setting over the bay.
"So, you think it was fate?" he teased. "The will of the gods?"
She leaned up on one elbow to look at him. "Why is fate any more far-fetched than coincidence?"
"It's not." He moved his finger around the outline of her lips and pretended to draw a smile. "But does it really matter? Call it anything you want, Grace Martin, as long as you don't disappear this time."
Grace Martin. She hadn't been Grace Martin in fourteen years.
Ahead of her loomed the sign for the Atlantic City Expressway. She flicked on her turn signal, then slowed for the tollbooth. She had phoned Noah earlier to make sure he'd be in his office today. It was Christmas Eve, and though the Cape May Bird Observatory stayed open through the holidays, Noah was flying home to Ann Arbor tonight. He had sounded rushed, his voice excited, and she thought it was because of his trip, until he explained: There had been two sightings of a brown pelican at the Observatory that morning. Unconfirmed, but still. "Brown pelicans are rare anytime, but God, Grace, here? And at this time of the season!" He was headed to Higbie's Beach, he told her. "Can I call you around ten-thirty? I should be back in the office by then."
"Ten-thirty's perfect." She was smiling. With luck she'd be in his office by 10:30. She'd almost added, "I'll see you then," but he hung up thank God before she could. Even as a child, she was always the one to inadvertently slip and ruin a surprise or blurt out a secret and then, too late, clap her hand to her mouth. She shook her head, wondering, as she had so often these past eleven months, how she had held the secret of Noah within her all this time. But you hold onto what you have to, she knew, thinking of how certain desert cacti can hoard a single drop of rainwater for decades, of how a virus lies dormant until conditions are exactly right for it to replicate, of how birds carry in their genes maps to places they've never been. And people with their secrets? They were no different, she believed, preserving them at enormous costs because sometimes, like water or instinct, their secrets were all that allowed them to survive.
Grace's affair with Noah felt like this sometimes: a matter of survival. It sounded so melodramatic, so Emma Bovary, so Anna Karenina, and if she had dared to voice such a thought to her best friend, Jenn, Jenn would have scoffed and asked Grace how she could even think something like this survival? when she had a child who was literally struggling to survive every day of his life. You want to talk about survival, Jenn would have said, then spend a day in the Pediatric ER. And Jenn would have been right, which is why Grace hadn't confided in her best friend, hadn't confided in anyone.
Snow flurries flew against the windshield and dissolved like tiny comets into silvery streaks. It still amazed her the pulse of electricity that rushed straight through her whenever she thought of Noah. How was it even possible that someone's name the thought of his name could cause such a physical reaction? And after twenty years.
Grace first met Noah at a church picnic along Lake Erie while visiting her grandparents. His long braid of red-gold hair was falling down his back as a loud swarm of kids pushed and pulled him toward the water, intent on throwing him in. She could tell he was letting them, though he pretended otherwise. "Hey, ya little protozoan," he yelled, or "Man, you are such an amoeba." Then he glanced up, caught her eye. "Hey you, how about a little help, here?"
She had ended up in the lake with a bunch of kids chanting, "He likes you; he likes you," and Noah blushing and saying, "Cut it out, ya protons."
Noah tutored inner-city Detroit kids in science and by the end of the day he had talked Grace into volunteering as well. The job would look good on college applications, she told her parents; it was great experience. She convinced them to let her stay for the summer. And so, she spent two months teaching kids to make baking soda-powered rockets; to eliminate the foam from root beer; to write invisible messages on acid-free paper with lemon juice, then decode them with Windex. Years later, doing similar experiments at the kitchen table with her son, Max, memories of that summer would return to her in sharp-edged fragments: the cement walls and uneven floorboards of the church classroom where they taught; one of the kids sneaking up on her and putting an ice cube down her shirt; a paper airplane sailing across the room, an invisible lemon-scented "I love you" on one of the wings.
Grace pressed her foot to the accelerator, casting up a silent prayer that the police were tied up with holiday traffic near the malls. Clouds of white spray from the damp road swirled around the car like steam. Only when the speedometer pushed toward eighty did she ease her foot from the gas pedal. "Not in a hurry today, are we?" she teased herself, glancing up and once again catching her reflection in the rearview mirror: the same wide gray eyes and bright lipsticked smile, but in this light she now saw the beginnings of crow's-feet when she smiled, and something gaunt in the way her cheek bones protruded in her face. Strands of gray in her hair. Twenty years. Something sharp pushed against the walls of her chest. Twenty years. How does it happen, she wondered, the person you thought you were just disappearing beneath your life the way the road was disappearing beneath the wheels of her SUV?
Twice that summer Noah arrived at her grandparents' door with his face painted blue and white, the home colors of the Detroit Tigers, to take her to a game. He loved the Tigers, he explained as the team went extra innings against the Toronto Blue Jays. Baseball united people across class, race, and religion as even religion couldn't. A few weeks later, they watched a no-name pitcher miraculously beat the Boston Red Sox, 3-0. A Sunday afternoon. David defeating Goliath. Who needed church? Noah asked, his voice hoarse from cheering.
He was strange and smart as a junior in college he'd already been accepted to Princeton's PhD program in biology and he didn't care what anyone thought of him, and he made Grace laugh, and when she was with him, she didn't care about what people thought of her either. But home in New Jersey that fall, she felt ashamed when she tried to describe him to her popular field hockey-playing girlfriends. He sounded weird, they said, which wasn't the reaction Grace had imagined. Noah was older, after all; he was in college. And he wanted her. Loved her. She had thought her friends would see her differently, respect her maybe, but instead they only rolled their eyes when she showed them photos. "Well, of course, he's in love with you, Grace. You're probably the most normal person he's ever dated." Shallow, high-school-girl comments, but Grace had listened to them so that, sometimes, on the nights when Noah phoned, she found herself seeing him through their eyes. And so, although she would watch the Tigers win the World Series four years later, she stopped returning Noah's phone calls that first autumn. Eventually, he stopped phoning. She graduated from high school and went to college, then grad school a master's in epidemiology from Penn. She fell in love with Stephen, married him in a huge traditional church wedding, had Max a year later, Erin seven years after that, and then, finally, Jack.
Grace found Noah's salt-crusted, bumper sticker-laden Volvo in the deserted parking lot at the Hawk Watch Platform. Even the die-hard bird watchers were absent today. Home with their families, no doubt, getting ready for the holiday. Her stomach sank with guilt. "Damn it," she whispered. For a moment she sat, unmoving, the engine running, holding her cell phone in her lap. She should be home, she thought. With her kids. It was Christmas Eve. She was a mother. What was she doing?
She stared at the white totals board at the base of the Hawk Watch Platform listing the number of sightings to date for each type of raptor: Cooper's hawk, red-tailed hawk, Swainson's. The counts were down, Noah had told her, the numbers for peregrine falcons half of what they'd been three years ago. Something like grief on his face when he talked about it. It made no sense to her. Not when there were wars and genocide and people dying of AIDS and cancer. Not when her own child was dying of a genetic disease few scientists understood. Noah had told her how over a thousand biologists and volunteers from ten nations had convened at the International Piping Plover census of 1991, created to increase the breeding population of the endangered species. She had been sickened. For a bird, she kept thinking. A bird.
She sat for what seemed a long time, staring up at the soft gray clouds pulsing overhead. The sky a sonogram of winter. And then resolutely, she punched in her home phone number on the cell. "You're sure everything's okay?" she asked her mother. With Jack, she meant. "I can come home." She held her breath, not aware that she was doing so until her mother reassured her: everything was fine, Max was out with his friends, she and Erin were baking cookies; Jack was taking a nap.
"Did you remember to check "
"His blood pressure was fine, honey."
Grace slipped the phone into the pocket of her field coat and leaned her forehead against the steering wheel and slowly exhaled. It sounded like a sob of gratitude and guilt and relief, but mostly, she thought, of gratitude.
The minute she crossed over the dunes, it was like entering another world, the wind shrieking, the waves crashing onto the beach one every five seconds, Noah had told her, fourteen thousand a day. The air smelled of salt and rotting wood and distance and longing, and yet for the first time in weeks, she felt as if she could breathe, actually take in a full breath without a tight band of sadness constricting her lungs.
This was why she had come here. This was her Christmas present to herself. And yes, of course, she felt guilty, but she also knew that if she didn't get away from the kids and Stephen and even her mother for a few hours, she would simply shatter inside. And if one more person asked if she was happy that Jack was home for the holiday or suggested that she be grateful to have this Christmas with him; if one more person told her that she "was such an inspiration," or she was "a saint," or the worst, that Jack reminded them of the real meaning of Christmas...
Why? she felt like asking. Because he's dying? That's what you need to remind you what the holiday is about?
Noah was down the beach a couple hundred yards. She shouted to him, but the wind lifted her sounds like a flimsy hat and flung them in the opposite direction.
She started walking into the wind, chin tucked to her chest, squinting against the blowing sand and snow. It was like treading through a current of fast-moving water. Spume lifted and blew in the gusts of wind. And then she heard a wild yell, and when she glanced up, he was running, sprinting, leaping what exactly was it? toward her.
No, not running. Charging. Stampeding. Open-armed, holding the binoculars away from his chest, the wind pushing him down the beach. She laughed out loud. Who was this man? He crushed her to his chest in a bear hug, swung her up in his arms. "Stop." She was laughing. "Put me down, you'll hurt yourself."
"I don't care," he said, holding her more tightly. "I can't believe this! What the hell are you doing here?"
"I'm not sure," she laughed into his ear. "I just needed to see you. Is that okay?"
"Okay? Are you kidding me? Okay?" He set her down, scanning her face with that inscrutable scientist's gaze of his. "It's wonderful, it's fantastic, it's come here, you," and he was tugging on her coat collar, pulling her face close to his, then kissing her. Tears pricked her eyes. My child is dying, she thought, and I'm happy, I'm so goddamn happy to see this man and to just be here with him on this beach for an hour.
When he let her go, she turned to face the water, and he stood behind her, enveloping her in his bearlike warmth. A row of sanderlings lined up at the water's edge, standing one-legged to preserve heat. Foam blew sideways against the gray background of sky, the waves moving forward, then retreating. He pressed his chin to her shoulder, his face cold against hers. It had started to snow for real, a faint layer of it sticking to the broken shells and eelgrass along the wrack line.
"So, how long do you have?" Noah asked after a minute.
"An hour and a half maybe."
"What do you want to do? Eat, get coffee, walk?"
"Walk, then maybe coffee?"
He offered her his arm. "Shall we?
She linked her arm in his. "We shall."
She was home in time to get Jack from his nap. "Snowing!" he cried when Grace opened his bedroom door. He was standing in his crib, pointing to the huge powdery flakes falling past his window.
"You like the snow?" she asked, scooping him up. He wriggled in her arms like a little fish. He was soaked with sweat. Her breath tumbled unevenly through her chest. Don't get sick, she willed silently. Please. They had an appointment the day after Christmas with the cardiac transplant team at Johns Hopkins. A heart transplant was Jack's last hope
"You see snow, Mama?" Jack asked as she laid him in the bassinet by the window. Even without taking his pulse, she could feel that his heart rate was high. Her own heart seemed to slow as if to compensate. "What's going on with you?" she asked him, as she held her fingers to the pulse in his wrist. She stared at the second hand on her watch and counted. After ten seconds, she stopped, calculated the number and closed her eyes in relief. His heart rate wasn't as bad as it had seemed. 120. High, but not terrible.
"Mama see snow?" Jack asked again.
She smiled at him, holding his face in her palms. His eyelids were droopy one of the symptoms of the disease, the muscles in his eyes so weak that he had difficulty focusing. She'd gotten in the habit of holding his chin, lifting his gaze up to meet hers. "Yes, Mama sees snow."
"I see snow too?" he asked.
"I don't know. Do you?"
"I do!" he laughed. She placed the thermometer under his arm for a basal temperature, then held his hand close to his side.
"Why you taking temperature?" he asked.
"I'm just checking," she said. "Is that okay?"
"So I can make sure you aren't sick."
He placed his free hand against his forehead. "I not," he informed her seriously.
"Good! You better not be."
"Because it's Christmas, Silly Goose." She pulled the thermometer from his arm. 97.8. No fever. She exhaled slowly, an ache in her lungs left over from the frigid ocean air.
A fat snowflake plopped against the window like a bug on a windshield and Jack smacked the glass, laughing as he squirmed away from her. And then, "Max see snow too?" he asked as she tugged off his wet clothes and lifted his tiny bird legs to slide a diaper beneath him.
"Max might be out in the snow." Playing hockey with the kids two streets over.
"Why?" Jack asked.
"Because he likes it."
"Why he likes it?"
"Hmmm." Grace pretended to ponder this. "I'm not sure. What do you think?"
He shrugged. "I don't know." And then, "Erin see snowing too? And Daddy?"
Grace glanced at him, his damp curly hair sticking up like the down of a newly hatched chick's. Where had this come from, she wondered, this recent need that everyone see or feel or do the same thing? She had read in Elisabeth Kübler-Ross's On Children and Death that even very young children somehow sense when their deaths are imminent, and it occurred to her that maybe this was Jack's way of holding onto them, anchoring himself to their world.
Grace tugged Jack up so that he was sitting. She pulled a clean red turtleneck from the bottom drawer of his bureau and slid it over his head. "Oh no! Where did Jack go?" she teased. "Where could he be?" But her voice caught. After he was gone, these were the words that would break her heart.
Copyright © 2007 by Maribeth Fischer
Reading Group Guide
The Life You Longed For By Maribeth Fischer
"...she began wondering about her own decisions, and about the shadow life of choices not made that trailed behind the life she lived now."
Grace, an epidemiologist, wife, and mother of three, spends most of her time fighting for the life of her youngest son, Jack, who suffers from mitochondrial disease a chronic, genetic disorder that occurs when the mitochondria of the cell fails to produce enough energy for cell or organ function. Adored by family and friends for her courage and commitment, Grace, however, is not a saint. She is having an affair with a man she abandoned twenty years ago, a man who offers her a glimpse into the life she didn't choose.
Just when Jack needs his mother the most, a new enemy confronts the family. Grace is accused of Munchausen Syndrome by Proxy, a form of child abuse in which the mother makes her own child sick in order to gain attention. Afraid she is the victim of a modern-day witch-hunt, Grace arms herself with knowledge and wages war against the two medical mysteries all the while trying to shield a secret that could destroy her family.
"A strong new voice in women's fiction" (Publishers Weekly), Maribeth Fischer has crafted both a suspenseful medical drama and a thoughtful piece on the true meaning of survival.
1. Prior to reading this novel, were you aware of Munchausen Syndrome by Proxy? If so, how has your opinion changed, if at all?
2. "But you hold on to what you have to, she knew, thinking of how certain desert cacti can hoard a single drop of rainwater for decades...And people with their secrets? They were no different, she believed, preserving them at enormous costs because sometimes, like water or instinct, their secrets were all that allowed them to survive" (p. 4). How does Grace's secret allow her to survive?
3. "The farther two quarks move away from each other, the more fiercely they're pulled back together." (p.15). Does this statement hold true for all of Grace's relationships or just her relationship with Noah?
4. This book is broken up into sections titled "Desire," "Belief," "Betrayal," "Fear," "Grief," and "What Survives." What meaning did you find in the introductions to each section?
5. "...No one who knew her would ever guess, not just where she had been, but who. Someone else" (p. 18). How is Grace different with Noah than she is with her family and friends?
6. Do you think Grace is a good mother? Why or why not?
7. "In most stories about the moon, someone was always trying to catch it, to pull it back down to Earth: the man who sees it reflected in the water and tries to pick it up, only to have it slip from his grasp just when he thought he'd had it." (p. 94). What does the moon symbolize in The Life You Longed For?
8. When accusations are made against her, Grace compares them to a modern-day witch-hunt. Do you think this is a fair comparison?
9. "To find the right answer, one must ask the right question" (p. 227). What question do you think Grace needs to ask herself?
10. "How was it that she had never understood until now how much the ocean was a landscape of loss: constantly breaking waves, emptied shells, land carried out to sea a little bit each year" (p. 270). What role does nature play in this story?
11. Discuss the book's central theme survival and how it applies to each of the main characters. Which character is best equipped to deal with his or her own struggles?
12. Are you satisfied with the outcome of the love triangle in this novel? Why or why not?
Enhance Your Book Club:
1. Watch the film version of The Crucible at your book club meeting and discuss the parallels to The Life You Longed For.
2. Ask each of your book club members to bring a children's book to donate to your local children's hospital (For a children's hospital near you, go to http://www.childrenshospitals.net/Template.cfm?Section=Hospital_Profile_Search.)Or collect funds and donate them to United Mitochondrial Disease Foundation (8085 Saltsburg Road, Suite 201, Pittsburgh, PA 15239 USA; http://www.umdf.org/about_umdf/donate.aspx)
3. Take your book club to a local Audubon center. (For locations, go to http://www.audubon.org/states/index.php.)