The Life You Longed For (6 page)

Anju smiled. “Our boy is doing much better,” she whispered, without taking her eyes from Jack.
Our
boy. When Jack was in the hospital, Grace often felt as if Anju was his other parent.

Grace couldn't stop crying now. Anju was also the only person, the
only
person—not even Stephen—with whom Grace had ever discussed, seriously discussed, a DNR order.
Do Not Resuscitate
. How do you explain to anyone what it is like to determine the exact scenario in which you will no longer fight for your child's life? How do you possibly convey what it feels like in your bones and in the back of your throat to not only
imagine
that scenario but to
plan
for it the way you would plan for you child's first day of school? Not something that
might
happen. Something that
would.
And Anju was the only person in her life who knew what this had been like.

Stephen turned her around, forced her to look at him. “Baby, listen to me. I have no idea if Anju knows or not, but if she does, and she didn't say anything to us, it's because she thought this whole thing was bullshit, which it is.”

She nodded bleakly. “But is that what
you
thought—” She paused. “I mean, when Jeff first told you, did you think—”

He pulled away from her. “Think
what,
Grace?” His voice was angry, but she saw that his eyes were terrified. Terrified because he
had
thought it, maybe for only an instant, less than that even. But he had thought it. She felt herself dissolving. She wanted to hate him, but she knew that had the tables been turned and someone told her that Stephen had been accused of Munchausen's, she would have vehemently denied it, but it wouldn't have erased that nanosecond of doubt, that silent
could he have
? And maybe a part of her would have even hoped—for only a second, she promised herself now, but still,
hoped
—that the accusation was true. Because if it was, it would mean that Jack wasn't really as sick as everyone thought. It would mean that he would live.

“I know you don't think that now, but just at first, Stephen, for a second—”

“No.”

“Would you tell me if you had? If you ever—”

“Goddamnit.” He turned away from her. “How can you ask me this? You are the reason Jack is alive.”

She began crying again. “What if they take him away from us, Stephen?”

“They can't, Grace.”

“Yes, they can, Stephen. You don't know.”

“You haven't done anything wrong!” he bellowed. “You are torturing yourself with this, Grace.” He lowered his voice. “Please. Nothing is going to happen.”

She wondered if he really believed this. She thought of Noah telling her how along rural airport runways that were plagued by flocks of birds, loudspeakers played recordings of distress calls made by crows in an effort to ward the birds off. She thought that Stephen's voice was like that now, as if the sound of his anger alone could push this horrible accusation away.

 

From the doorway of the walk-in closet, Stephen tossed his shirt onto the pile of dirty clothes by the bathroom door. Grace stared at Stephen's arms and chest and thought what a beautiful man he was and how she didn't deserve him. “We're an open book, Grace,” he said as he yanked a worn T-shirt over his head and flicked off the closet lights. “Let them investigate us all they want.” He climbed into bed, handing her the pint of Häagen-Dazs that he had picked up on the way home. She thought of how in Stephen's family they always ate ice cream when they were upset, as if to numb themselves from the inside out. They'd eaten it for dinner the July night Stephen's dad walked out on his wife and sons for a woman young enough to be his daughter; they'd eaten it when their mother announced that she was remarrying a man neither Stephen nor Jeff could stand; and they ate it again when she left that man for another.

Years later, the night Grace and Stephen finally—after how many experts, how many trips to different hospitals—received the diagnosis for Jack, they sat at the kitchen table, wordlessly passing a pint of butter pecan ice cream back and forth to each other. And only yesterday, sitting in the family room after the trip to Baltimore, they'd played the scene out again.

Now tonight. Grace imagined that this was the taste of betrayal: cold and rich and so achingly sweet that for a moment—
maybe
—you forget how much you are about to lose.

G
race sat straight against the passenger seat, her shoulders pushed back, her hands in her lap. Knees pressed together beneath her gray skirt. It was like being in Catholic school again: obeying rules that made no sense.

She stared out the window at the city blurring by. How ugly it was here: miles of squat round oil refineries, trash heaps, and high-rise parking garages. And then the airport, planes suturing the sky. The large black letters of the word
PREGNANT
? glared from a shabby billboard followed by a 1-800 number. Grace dropped her eyes back to her lap. Did it not count for anything that she had wanted each of her children? Stephen reached from the steering wheel and squeezed her hand. “I know,” he said. “It's not fair.” She nodded, feeling both grateful and guilty. She didn't deserve him. She squeezed his hand in return. Like a coma patient, she thought, and this was the only way to communicate.

They were on their way to a lawyer's.

Grace had spent the last two days terrified to let the kids out of her sight. She didn't go out, didn't get dressed, didn't answer the phone. She couldn't stop crying. She canceled Jack's therapy appointments. She didn't trust anyone. She didn't want him near the hospital. She sat at the computer in her robe and a pair of Stephen's sweat socks, reading the Munchausen by Proxy Home Page, which had a database of over four hundred articles about the disorder. She'd had no idea the disease was this prevalent, that so many women were capable of devising such horrible ways to hurt their children. The titles of the articles themselves had read like advertisements for horror movies:

“Salvage or Sabotage: Munchausen's and the Chronically Ill Child.”

“The Bacteriologically Battered Baby: Another Case of Munchausen by Proxy.”

“Supermom or Super Monster.”

Even the names of the journals in which the articles had been published seemed ominous:
Archives of Disease in Childhood, Journal of Forensic Sciences, Journal of Child Abuse and Neglect.
She couldn't erase from her mind the description of the four children so severely abused by their mother that they were dwarfed. Locked in closets for weeks and months at a time and slowly starved. A sixteen-year-old boy had the height of an eight-year-old; an eight-year-old girl had a bone age of three years. She pictured bonsai trees, their roots constantly cut beneath the surface of dark soil, abused into minuscule perfection.

None of it made sense.

They were nicknamed “helicopter mothers” because they were always hovering over their distressed child. She thought of how she had never left Jack alone in the hospital. People told her all the time: “I don't know how you do it, Grace” or “You're a saint,” or “I've never met a parent as devoted as you.”

Supermom or Child Abuser
. The words echoed.

She couldn't sleep, couldn't eat.
In cases of Munchausen by Proxy, termination of parental rights is the only absolute way of ensuring the victim's safety.
Erin and Jack watched videos, one after the other, though normally the rule was no more than one hour of TV a day. She imagined that years from now she would remember little of this time except for the odd lines of high-pitched Disney dialogue:
I have come to seek the hand of the Princess Jasmine…. Take my advice, kid…Hakuna Matata
.

 

“Please don't argue with me,” she had begged Max this morning, after reneging on her promise to let him go to the hockey rink with a bunch of kids from his team. “I wouldn't ask you to stay home if it wasn't important.”

“You
said
I could go, Mom.”

“
Please
, Max.” She was sitting on the stairs in her bathrobe. She was exhausted, and she needed a shower and the house was a mess. Uno cards lay scattered on the hallway floor. A puzzle piece. One of Jack's socks. Already she felt defeated. “I can't explain it to you right now, but—”

“It's not fair!” Max exploded. “You always do this! Why'd you even buy me new skates if I can't use them?”

Stephen had intervened from the kitchen. “Max, you yell at your mother one more time and you can forget the rink altogether.” He strode into the hallway, a dishtowel over his shoulder, and told Max to go empty the dishwasher, swatting him with the towel as Max stomped off. Stephen squatted in front of Grace then. He hadn't shaved in two days, and she knew he was exhausted too. He'd been doing everything—all of Jack's medications, the cooking, laundry. “We can't keep him in all week,” he said gently.

“I'm just so afraid,” she sobbed.

 

She could feel Stephen watching her as he drove, though her eyes were closed. “What?” she asked without opening them.

“You look beautiful,” he said.

She clenched her jaw against the irritation she felt. “I thought the whole point of this suit was to
not
look beautiful.” Tears pricked her eyes. “I feel ridiculous.” She wished she could have laughed at herself—trying on and discarding clothes for nearly an hour this morning, as if to prove to the lawyer that—
what
? Being a good mother was a matter of wearing the right costume? It was ludicrous.

But nothing Grace had tried on was right: her good clothes—high-necked sleeveless sweaters and long slim-fitting skirts; an impossibly small LBD, Little Black Dress, that Stephen bought her a few years ago—were too formal, too sexy. And you couldn't be sexy if you were accused of harming your children, could you? And no bright colors. Nothing that would attract attention. Munchausen mothers were
desperate
for this, after all. She had needed neutral shades: grays, off-white, beige.
Pastels
, she thought bitterly; a flower-print Sunday school dress. Below the knee, of course. She thought of how the nuns used to make the girls genuflect before leaving home-room to confirm that their hems touched the floor.

She'd borrowed the gray suit from her mother. Nothing of her own was right.
She
wasn't right.

 

“Jack's blood pressure was still high when we left,” Grace said as they passed the exit for South Street, the exit she usually took to Children's.

Stephen glanced at her. “I know, but we didn't give him the cloni-dine until almost one-thirty.”

She shook her head. “I'm not taking him to the hospital until we get this straightened out, Stephen.” Her voice rose. “I can't.”

“Let's just see what the lawyer says.”

They crossed the Schuylkill River, the pale yellow dome of the art museum off to the right along with the boathouses framed in white Christmas lights. The gray sky and gray river and gray trees reminded Grace of a faded photograph, of a time before color.

“Hey.” Stephen reached for her hand and she gave it to him. “We're in this together, Grace. I mean that.”

She turned to look at him—the high cheekbones that Max had inherited, the long-lashed eyes that Jack had. She loved that Stephen was handsome, that he was one of those men who grew better-looking with age, although except for the gray in his hair and the lines fanning out from his eyes, he didn't look all that different than he had fifteen years ago. The same short haircut and clothes: khakis, loafers, button-down oxfords, sleeves rolled casually a quarter of the way up his arm. Polo shirts in the spring and summer. A blue blazer on a hanger in the back of his car, “just in case.” She smiled. He was wearing the Eeyore tie the kids had given him for Christmas. “Thank you,” she said quietly.

He frowned. “For what?”

“Just being here.” Her voice cracked. “For loving me.”

“I hope you don't really think that's something to thank me—” A white Lexus cut in front of them, and he slammed his foot to the brakes. “Asshole,” he muttered. “Didn't even look, never even saw me.”

She rested her head against the seat back.

He glanced at her. “Did you see that thing on the news last night about driving?”

“Every two miles the average driver makes something like four hundred observations, forty decisions, and one mistake, which might or might not lead to an accident.” She glanced at him. “Every two miles. Can you imagine?”

“Jesus, how do you remember this stuff?”

“
Why
do I remember it?” She turned back to the window, wondering how many decisions that equaled in a day, a week, a life? And how many mistakes? And how could you
ever
possibly know all the things you'd done wrong? She closed her eyes, her chest weighted with fear again. What had she done to make someone think she would harm Jack? And who would think this? The word echoed.
Who, who, who
, like the character of Mr. Owl in one of Jack's picture books.

She had been through everyone—Jack's doctors, his nurses, Noah, Jenn, even someone from the mito group. She was so honest with them. Had she said something that was misconstrued? The time Jack had the nasogastric tube in his nose, and she joked that he looked like a little elephant man. The jokes about him being an alcoholic because of the broken capillaries—
spider telangiectasias—
in his cheeks, caused by his malfunctioning liver. Or that time she and Andrea, one of his night nurses, were watching him sleep, up on his knees and elbows, which he did to protect his swollen stomach, and Andrea commented that he looked uncomfortable, and Grace laughed and said that at least if she needed to give him a suppository in the middle of the night for his blood pressure, he was in a good position. Andrea had laughed. She squeezed Grace's arm and whispered, “Isn't it awful? You really do start thinking like that after a while, don't you?”

She wondered if her mother might have said something, without meaning to. That Grace seemed consumed with Jack's illness or that she was overprotective. Grace had questioned Stephen even, and found herself watching him watching her and wondering what he was thinking.

“What are you
doing
?” She grabbed Jack from Stephen's back where he'd been clinging like a little barnacle. Stephen was pinning Max to the floor, and Erin was trying to tickle Stephen enough that he'd release Max. They were all laughing, trying to pull each others' socks off, the goal of the wrestling match.

Jack started howling the minute Grace pulled him away. “Do you not get it?” Grace said furiously to Stephen. “Are you trying to kill him?”

Erin started to explain: “We were just—”

“I'm talking to your father,” Grace snapped. “Here—” She put Jack down. “Take Jack. Go do something, all of you.”

They waited until the kids were out of the room.

“Trying to
kill
him, Grace?” Stephen was livid.

“Oh, please. You know I didn't mean that, but my God, he's in heart failure, Stephen.”

“He was
laughing
!” Stephen yelled. “He was having fun, for crying out loud. Or have you forgotten what that's like?”

“Go to hell,” she said. “You think I
like
being this way? You think I don't want my child to be happy?”

He didn't say anything. They were standing in the middle of the living room, facing off like boxers, both of them breathing heavily. Couch pillows were strewn on the floor, toys were everywhere. “I mean it,” she pressed. “Is that what you think?”

He stared at her coldly “You're so wrapped up in the medical stuff—”

“I have to be,” she said. “I have to be because
you
won't, Stephen.”

“
Won't
, Grace?”

“Fine,
can't
. Whatever. You were still wrestling with a child in end-stage heart disease. I mean, how stupid—”

“
Stupid?
Jack was laughing.
Laughing
.” His voice cracked. “God damn you,” he said, and walked away from her to the fireplace, where he spread his arms like someone under arrest and bowed his head, shoulders heaving.