The Life You Longed For (2 page)

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?”

“Why?”

“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.”

“Why?”

“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.

T
he story of mitochondrial disease begins with the story of the mitochondria themselves, those minuscule organisms in our cells that convert food and oxygen into the energy we need to live. Like most stories, this is a story about
desire,
a word that stems from the Latin
sidus
, or “star,” referring to those distant suns whose light often touches us only after the stars have died. Desire is similar, is it not? Its target is like a star's glow, something we reach for but can never hold. Or is the equation backwards? Maybe it is
because
we desire something that it begins to die, altered by the force of our want.

The story of mitochondria is also a story of suffering. Ordinary, everyday suffering. A virus. An infection. For it was as a virus that the mitochondria first invaded our cells billions of years ago. A symbiotic relationship soon formed. A marriage, you might say. Our cells provided food and shelter; in return, the mitochondria produced energy in the form of ATP, or adenosine triphosphate, without which we cannot survive.

This too is a common story, perhaps the most common of all: the one about how desire becomes necessity. Scientists infecting amoebas with bacteria then breeding the survivors, for instance, have found that after five years, the amoebas can't grow at all
without
that bacteria. So it is with the mitochondria: These long-ago viruses are accustomed now to living within us; we are accustomed to having them there. We can no longer survive without each other. One tenth of our cells is made up of mitochondria—one tenth of us. In fact, if you were to lay all the mitochondria in a single human body end to end, they would circle the earth two hundred times.

Think of it: an entire planet, circumnavigated by desire.

Still, it is DNA, that famous double helix—and not mitochondria—that garners the attention. At the end of the twentieth century, photos of computer-generated models of DNA made the covers of national magazines, and DNA was mentioned in the headlines of major newspapers. “The decoding of the
human genome,” the president declared to a flock of reporters on the White House lawn, “is without a doubt the most important, most wondrous map ever produced by mankind.” And yet, without the energy provided by mitochondria, organelles so tiny that a billion of them fit inside a grain of sand, even the unraveling and replicating of DNA would not be possible.

No wonder mitochondrial diseases are so devastating. For
all
movement—a heartbeat, a breath, the blink of an eye, the splitting of a cell, the firing of a nerve signal—is fueled by ATP, by the mitochondria. And movement too is about desire, isn't it? Aren't we always moving toward what we want even when it feels as if we are running away?

G
race arched her neck, her weight on her elbows, and tilted her head back into the jet of hot water, rinsing the shampoo from her hair. The bottom of the tub was gritty with sand. She could feel it each time she moved. It had been in her socks and ears and hair and under her fingernails; she'd had to empty her shoes over the toilet.

Before she left Cape May, she had told Noah, “I know I wouldn't have seen you over the holidays, but I miss you more—
if
that's even possible—when you're in Michigan.”

He nodded. “Like quarks.”

“Quarks?” She grinned. He was
always
doing this—one of the things she loved.

“Quantum physics. The farther two quarks move away from each other, the more fiercely they're pulled back together.”

“Ahhh,” she smiled. “So that's what happened to us?”

 

She pushed herself into a sitting position and turned off the water. From downstairs came the sound of Burl Ives singing “Santa Claus Is Coming to Town.”
He knows when you've been bad or good…
She stood, her legs red from the heat, and lifted a towel from the hook on the door. The mirror was fogged with steam. She couldn't see her face but knew it was wind-burned. Even the cotton towel felt scratchy against her skin.

 

“Mama!” Jack called from the family room the minute she came downstairs. Despite sweatpants, turtleneck, cardigan, and big socks, Grace felt chilled, the ends of her hair still damp. “What, Goose?” she asked Jack. “Was your movie good?” She hit the eject button on the VCR as she passed it. The Christmas tree was on, its colored lights glowing in the reflection of the windows.

“Max called Santa a turkey,” Jack said.

“He
what
?” She made a face at her oldest son who lay sprawled across the couch, feet dangling over one end.
“Max.”

“I said he was
in
Turkey, Mom. Erin asked where I thought he was, and I was showing her on the globe.”

“He was, Mama,” Erin said without looking up from her drawing.

Grace leaned down to plant a kiss on the top of Erin's head, then handed Jack the video they'd just watched. “Here, silly, put this on the shelf and stop trying to get your brother into trouble.” She squeezed Max's ankle. “Sorry.”

He nodded without lifting his eyes from his
Sports Illustrated
.

The globe was the same turquoise sphere with pastel-colored countries, many of them no longer in existence, that she'd had as a child and on which
her
father had mapped Santa's route for
her
. A commercial pilot, her father factored in headwinds and tailwinds, turbulence, and cold fronts. “Now, with those winds coming down from Canada, it might get a little bumpy coming across the Atlantic,” he'd tell her. Or, “You know, Gracie, you might want to hit the sack a little early, because with that tailwind, I have a feeling Santa's going to arrive ahead of schedule this year.”

 

In the kitchen, Grace flipped on the light over the sink and filled the coffeepot with water. On the counter sat a stack of mail—Christmas cards mostly, along with the plate of peanut butter cookies Erin and Grace's mom had made earlier. Grace broke the edge off one and ate it as she opened the first envelope. It was from Jenn, she knew, recognizing her friend's handwriting. The gurgling of the coffeemaker filled the room as she scanned the note. She hadn't seen Jenn in nearly a year. She stared at the enclosed photo of Jenn's three boys, the oldest already a sophomore in high school. All of them were tall and dark-eyed like their mom. The Barbarian family, Jenn would laugh. The boys had her great smile.

Grace had met Jenn, who had been in the nursing program at Penn, in a graduate seminar on Children and Disease. Grace still had the texts from that class: David Morris's
Illness and Culture
, Leavitt and Numbers'
Sickness and Health in America,
Batshaw's
Children with Disabilities.
The diseases sounded like law firms, Jenn said: Wolf-Hirschhorn; McCune-Albright; Beckwith-Wiedemann; Borjesson-Forssman-Lehmann. She and Grace would drill each other over cosmopolitans at the Ruby Lounge during Friday-night happy hour: Maple Syrup Urine Disease, characterized by syrupy-smelling urine; Cri-du-chat syndrome, so named because of the catlike cry infants often made. The diseases were trivia then, possible quiz questions. They hadn't connected these illnesses to real children yet, to the parents of those children. Young and single, neither could have imagined that one of them would one day have a child with such a disease. Back then, mitochondrial disease—Jack's disease—wasn't even in the medical literature.

Grace set Jenn's card down and opened the next. It was from Kent, one of the guys in the beach house in Rehoboth, Delaware, she and Stephen used to belong to. He and Ciera had decided to divorce. Grace reread the words, shaking her head. Kent and Ciera. Of all the couples, and there'd been five, they were the last couple Grace would have imagined getting divorced. She thought of all those beach-house mornings, walking onto the back porch and hearing the thrumming of the outdoor shower, Kent and Ciera laughing and murmuring while the rest of them slumped at the picnic table sipping coffee in hungover silence and irritation. Eventually, Kent would emerge from the shower wrapped in a towel, all but beating his chest. Ciera behind him, flushed and defiant. Tarzan and Jane.

Now, Grace skimmed over the generic phrases: “Comes as a shock,” “grown apart,” “for the best,” before setting the card aside. Outside snow lofted down over the spherical shapes of the pine trees. She crossed her arms over her chest as if she were still cold, feeling pensive and sad. Did anyone ever know what was happening with anyone else? Ever
really
know? She thought of how easily she had just disappeared from her own life for a few hours and of how easily she had simply returned, standing here now in sweatpants, reading the mail, nibbling one of her daughter's cookies. How no one who knew her would ever guess, not just
where
she had been, but
who
. Someone else. She closed her eyes, pictured Noah lifting her in a bear hug, and felt an ache settle in her chest.

“Mama, did you try the cookies me and Grandma made?” Erin leaned her elbows on the counter and propped her chin in her hands. No one had combed her hair today, and she'd lost another tooth last week. She looked like a waif.

“Your cookies are absolutely great, honey-bunny.” She cupped Erin's face in her hands, pushing her curly hair from her eyes. “Are you leaving some for Santa tonight?”

Erin nodded. “That's what Grandma asked me.”

“What'd Grandma ask?” Max slouched into a chair at the table.

Grace glanced at him. “You look tired, honey. How was hockey today?”

“
Bad
. I
really
need new skates, mom.” The Bauer 400s in the back of her SUV.

“Well, did you ask Santa?

“Mom.”

She grinned.
“Max.”

From the next room came the shudder of the automatic garage opening. “Daddy's home! Daddy's home! Daddy's home!” Jack shouted, hurrying for the door, yanking his mini suitcase on wheels—his oxygen canister—behind him.

“Mama, why is your face so red?” Erin asked.

Grace lifted her palm to the side of her windburned face. “Is it?”

 

“If you could be any animal, what would you be?” Stephen read the question from the rectangle of colored paper Jack had pulled from the glass candy jar. The jar was filled with similar questions written on scraps of colored paper and folded into squares;
If you could change the sky to any color besides blue, what color would you choose? If you could relive one day of your life, what day would that be?

“This is so stupid,” Max said now around a bite of cheesesteak.

“Anytime you want to write your own questions,” Grace said.

“
No,
Mama,” Erin whined. “He'll just write things about hockey.”

The question jar was a gift from one of Grace's mother's friends who was a creative writer. They took turns picking the questions each night.

Stephen grabbed a handful of potato chips. “What animal would you be, Erin?”

Erin cocked her head to the side, thinking. Grace caught Stephen's eye and smiled. He'd come home with Philly cheesesteaks—extra hot peppers for him, onions for Grace—their Christmas Eve tradition. And now a glass of Merlot, the snow falling…This is enough, she thought, guiltily thinking of Noah. This is more than enough.

“I'd be a polar bear,” Erin announced.

“You mean a Teddy bear?” Max laughed.

“Mama,” Erin whined. “Why does he
always
make fun of my answers?”

“He's teasing,” Grace said. “Tell us why you would be a bear.” She leaned forward and took another bite of cheesesteak. Sautéed onions dripped onto her plate.

“'Cause I could play in the snow all day and not get cold.” She glared at Max, who rolled his eyes and muttered, “I'd be anything that lives alone.”

“Like a snake?” Erin said.

“No, not like a snake,” Max mimicked.

Jack laughed. “Max is snake, Mama!”

Grace pointed at him. “
You
are a little instigator.”

“No,
you
gator, Mama.”

Erin giggled. “Not
alli
gator, silly.”

“I'd be a bird,” Grace said.
A brown pelican. At this time of the season!
Noah had once traced his finger over her sternum and told her, “If you were a bird, this is where the flight muscles would be attached—here, to the bone protecting the heart.”

“Alligator!” Jack insisted.

“A bird,” Grace laughed. “Maybe a goose like you. Or a swan.”

“They mate for life, don't they?” Stephen asked. “I guess that settles it for me. I'd have to be a swan too.”

Max groaned. “Gross, you guys, I'm trying to eat.”

“Mama, what does ‘mate for life' mean?” Erin asked.

“It means that you stay with one person that you really love for your whole life.”

“Like you and Daddy?”

Something fluttered in Grace's chest. A bird taking flight. “Yes,” she agreed. “Like me and Daddy.”

“Can I be a swan too, Mama, so I can stay with you and Daddy my whole life?”

Max snickered. Grace warned him with a look. “Of course, you can be a swan.”

“I swan too?” Jack asked.

Grace laughed. “Yes, you too.” He looked so good, she thought. If it weren't for the nasal cannula and the raspy hiss of his oxygen, you almost wouldn't know he was sick. For a moment, she couldn't swallow, her throat tight. Please let him live, she thought.

 

Everything was done: stockings filled, presents placed under the tree, a note from Santa thanking Erin for the cookies. Stephen was bringing in firewood for the morning. Grace was checking her e-mail, most of the messages from the women in her mitochondrial support group. She often felt closer to these women than to anyone, including Jenn, her mother, even at times, Stephen. She hadn't even met most of them, yet they had pictures of each other's kids on their refrigerators, knew the kids' birthdays and what complex of mitochondrial disease they had, what their symptoms and prognosis were. They knew the same specialists, had been to the same hospitals: the Cleveland Clinic, Scottish Rite in Atlanta, both Children's and St. Christopher's in Philadelphia, the University of California, San Diego, a handful of others. It was a small world.

As she sat at the computer now, waiting for the e-mails to download, she couldn't help but smile, despite the edge of sadness that had been pushing at her all night. Most of the messages would be from the women in the support group, wishing one another happy holidays, sending prayers for whoever's child wasn't doing well, maybe sharing a joke. Like the string theory of the universe, which held that the world was composed of billions of invisible threadlike strings, constantly moving, vibrating, holding the universe together. The support group was similar, Grace thought. All these woman reaching across vast distances to seek or offer consolation, encouragement, support. Kempley in North Carolina, Anne Marie in Seattle, the woman in Australia whose five-year-old daughter had just died from mitochondrial-related complications, another mother from Japan, Beth from Pittsburgh. Hundreds of invisible messages, tiny strings of words, moving across states, entire continents. Holding up the world.

Mostly, the women listened to one another vent and grieve—and laugh, which they had to do, and which no one who didn't have children as ill as theirs could begin to understand. They traded medical articles and advice. It was Kempley who insisted that Jack's muscle biopsy had to be redone if Grace wanted any chance of locating the exact mutation in the mitochondrial DNA. Kempley who explained to Grace the difference between a fresh and a frozen muscle biopsy. Kempley who explained why it mattered.