Five Days Left (6 page)

He paused for a second before speaking again. “I’m so sorry. I’m getting ahead of myself. I’m looking at Tom here, and I know he understands Huntington’s. But I shouldn’t have assumed you know about it, Mara. Have you heard of Huntington’s?”

She thought she had. She remembered hearing Tom talk about it once—after he’d read about it for a class in medical school, maybe? Or had one of his partners treated a Huntington’s patient? She couldn’t recall, and she wasn’t sure she’d ever heard all the details about the disease, but she could guess now, based on how Dr. Misner was acting, that it was something truly horrible.

She turned to Tom, to ask him to remind her what it was he’d told her about it. She hoped he’d roll his eyes and tell her the other man was way off base, that whatever it was that was going on with her, it didn’t warrant Dr. Misner coming around to the front of his ridiculous desk,
leaning toward her the way he was leaning, looking at her the way he was looking, talking about specialists and blood tests and social workers who could help her daughter cope. But Tom’s eyes, shining with tears, told her something else.

Mara turned back to Dr. Misner and shrugged, and he put a large hand on one of hers. His eyes never leaving her face, he described the disease in a low, gentle voice. Tom pulled his chair closer to Mara’s and put an arm around her, and out of the corner of her eye she could see him studying her expression as Dr. Misner went on. She tried to focus on the doctor’s words as her mind raced, first to make sense of what he was telling her, and second, to prepare an argument as to why he was as wrong as her husband in suggesting there was anything wrong with her beyond mere work stress and advancing age.

She only managed to pick up on every fifth word or so. The rest of Dr. Misner’s sentences were muffled, as though he were speaking over a car radio that was going in and out of frequency.

Degenerative neurological disease.

Progressive brain cell death.

Caused by a genetic disorder. Every child of an affected parent has a fifty percent chance of inheriting.

This is why he’d asked so many questions about her birth parents, Mara thought. If only the orphanage had provided records to Pori and Neerja, she could whip those out and show Tom and his classmate how cracked they were.

Unless the records didn’t show that. She pressed her eyes closed quickly against the thought. But she allowed herself, before she opened them again, one more notion along the same lines: thank God Laks was adopted, and didn’t share Mara’s genes. Laks’s birth parents, Tom and Mara knew from the thick file they’d received, had no malfunctions in their DNA.

Characterized by decreased mental function.

Gradual loss of physical control.

Mara sat a little straighter and almost laughed with relief. Dr. Misner was as overly dramatic as her husband; neither of those things applied to her. She was functioning perfectly fine, mentally. And she certainly had no problems with physical control. She dropped things from time to time, but didn’t everyone?

Although, if she thought about it, she would have to admit she’d been doing it more often lately. She had fallen out of Downward Dog pose in yoga class twice last Saturday. Steph, on the next mat, had teased under her breath, “It’s not Drop Dead Dog.” But clumsiness didn’t amount to “loss of physical control,” Mara told herself.

Involuntary movements of the face, body and limbs, commonly known as “chorea.”

Mara regarded her hands. To her dismay, they weren’t gripping the chair arms as she’d intended, but were instead moving up and down the arms, back to front, front to back, in a rapid motion she had been completely unaware of. She shoved them back under her legs and pressed her thighs against them again, harder this time.

Other symptoms include depression and anxiety. Mood swings and personality changes.

She felt her cheeks warm.

Forgetfulness
.

She swallowed hard and swung her eyes from Dr. Misner to Tom. He was biting his lower lip and his face was ashen.

Gradual decrease in ability to perform daily activities such as work, driving.

Eventual inability to walk, speak, swallow, perform self-care.

Completely dependent on others in late stages.

Wheelchair. Nursing home. Feeding tube.

Limited awareness of surroundings. Inability to speak. May not recognize family members.

Life expectancy ten to fifteen years after onset of symptoms.

No effective treatment to slow progression of brain cell death.

Fatal.

No cure.

When Dr. Misner was finished, he put a hand on her shoulder. “It’s a lot to take in,” he said gently. “I’ll give you a minute to absorb it, and then we can—”

Mara couldn’t force her lips to stop trembling. There was no way she’d be able to deliver a convincing argument against both of these men in her present state. She revised her strategy: if she could make it out of the office without crying, without letting them think they’d gotten to her, she’d consider that a victory. She stood abruptly, shrugging the doctor’s hand off her shoulder. “No need,” she said.

Dr. Misner moved toward her and she turned quickly, making it to the door before he could get past her chair. She couldn’t take another second of his soft voice and understanding eyes and his prediction that what was wrong with her was so much worse than mere job stress. Tom stood quickly, too, and followed her into the hallway, a hand on the small of her back as he led her to the elevators. Dr. Misner caught up with them and walked beside Tom. Mara saw them exchange knowing glances and nods and saw their lips move, but the blood in her head was swirling too loudly for her to make out their conversation.

In the car, she closed her eyes and lay back in the seat, pretending to be too exhausted to speak as she thought through the long, dreadful list Dr. Misner had recited and told herself none of those things would ever happen to her. Tom drove in silence, a hand on her leg. When they pulled into the garage, he hurried to get her door for her but she pushed it open herself and brushed past him. She busied herself in the kitchen, filling and then slowly drinking a tall glass of water while she waited for her nerves to settle.

Tom stood nearby, waiting. The look on his face—all compassion and sympathy without a trace of the “I told you so” she’d been expecting—made her feel enraged.

“Of course, Misner could be wrong,” he said, reaching to put a hand
on her back. She stepped out of his reach. “I hope to God he’s wrong.” He moved closer and tried to wrap his arms around her but she edged sideways, out of his range again, and he let his arms fall to his sides.

“I could call Dr. Thiry’s clinic if you want,” he said. “Arrange for the blood test. You tend to want certainty about things. The tests would give you that.” He touched her shoulder briefly, drawing his hand back before she could move away.

“You don’t have to get tested, of course,” he said. “It’s up to you. This might be the one time you’d prefer not to have certainty, and that would be totally understandable. You heard what Misner told us: since there’s no cure, a lot of people who’re at risk decide they’d rather live with a fifty-fifty chance they don’t have it than a one hundred percent certainty they do.”

Mara considered her husband. She hadn’t heard Misner say that. She wondered what else she’d missed. It didn’t matter, she told herself. Tom and his med school pal were both way off base.

“And I’d understand if that were your decision, too,” Tom said. “But like he also said, you can still get treatment for some of the symptoms, whether or not you want to have the confirmatory test. Depression, anxiety—those can be treated with medication. I know I’ve said this before, and you haven’t wanted to hear it. But if you took something for those things, you’d be happier. Less bothered by . . .” He paused. “Everything.” He was so dramatic, she thought. She wasn’t bothered by everything. Not all the time, anyway.

“And if you do want to get tested, and if it turns out positive, there’s still hope. They’re doing research all the time to find a cure, to figure out how to slow it down.”

Mara wondered if Misner had told them that, too, or if Tom happened to know it on his own. He waited for her to respond, and the hopeful look on his face annoyed her. She fought to control her anger—no sense in proving Tom’s case for him.

“Thank you,” she said stiffly. “But with all due respect, I think your
wonderful Dr. Misner is as far off about this as you are. It was a moving speech he gave, and he played the part extraordinarily. But there’s nothing wrong with me.”

Tom’s eyes widened.

“Fine,” she said, “I forget things. But I am a working mother with a high-stress job. I’m almost forty.” He started to speak but she held up a hand. “And maybe I’m irritable sometimes—more than I used to be. But we’ve had some hard times lately. We’ve grown apart. We’re not the team we used to be. And that’s making us both act differently.

“And yes, I’m a little klutzy all of a sudden, a tad fidgety now and then. While you, I will point out, are easily annoyed. Impatient. And obsessed, so it would seem, with finding some kind of medical issue on my part that you can blame all our troubles on.”

He made a noise in protest but she shook her head and raised a finger to stop him from interrupting. “I admit I haven’t been easy lately,” she said, “and I’m sorry for that. But neither have you. And at least I’m not dragging you around to old classmates of mine, having them describe some horrible, degenerative, fatal disease and telling you, ‘I think you might have this.’ If I were, I expect our troubles would get a lot worse.” She arched a brow, driving home the point: after this stunt, he only had himself to blame if things became even more tense between them.

He reached for her again. “Mara.”

She stepped quickly around him and walked to the doorway. “I’m going to bed,” she said as she left the room. “I’ll put your pillow and a blanket on the couch.”

Scott

Unable to focus on spelling and grammar, Scott shoved the English papers aside and opened his laptop. As he waited for it to boot up, he craned his neck to listen to Curtis read. He loved how the boy sounded out each word in a whisper, running his finger slowly underneath the sentence.

“You . . . can . . . take . . . the . . . plate.”

He listened for another few seconds, then opened his favorites list and clicked open the Not Your Father’s Family forum, the online support system he had relied on since the night he and Laurie agreed to keep Curtis for the year. Panicked at the thought of becoming an instant father, however temporarily, he had surfed the Internet for hours before stumbling on the hodgepodge of regular posters: 2boys, a widower raising his own son and a stepson; flightpath, an older poster who had been a single mom to two daughters after divorcing their alcoholic tyrant of a father; LaksMom, an adoptive mother; SoNotWicked, a stepmom and the creator of the forum.

Over the past year, Scott had talked to them almost daily about everything from parenting-related topics like discipline, bedtimes and homework supervision, to more general lifestyle-centered issues like balancing work and family, career changes and favorite recipes. And eventually to
far more personal subjects, like disagreements with friends, marital problems and even sex. His online confidants didn’t know his real name or what he looked like, but they knew as much about the joys and stresses of his relationship with Laurie as Pete did, and as much about his love for his little man.

He scrolled to the top of the page to read the day’s topic.

Tuesday, April 5 @ 7:55 a.m.

SoNotWicked wrote:

MORNING, everyone!! I had initially planned to spend today talking about summer camp—there’s been chatter on here lately about how the last day of school isn’t far away. It’s THAT time of year AGAIN—time to think about what we’re gonna do with the munchkins for TWO months. But I’m gonna save that one for ANOTHER time.

I don’t know about all of you, but ever since MOTORCITY reminded us about LMan’s upcoming departure, I’ve been thinking about this: HOW do you foster parents and guardian types let yourself pour all this love and attention into a kid you might NEVER see again, once he goes home? Do you protect yourself a bit by holding SOMETHING back, stop short of investing yourself 100%?

I personally can’t IMAGINE putting in the kind of time and energy it takes to look after a kid without having some assurance that in return, I’ll get lifelong love and loyalty. Someone to visit me when I’m old and decrepit and muttering my days away at SHADY PINES! And here you guys are, doing all this for kids who may never contact you after this. How on EARTH?

Scott ran a hand across his chin and wished SoNotWicked had gone with the summer camp topic. Scanning the day’s responses, he lingered as always on the posts by his closest forum friends. The first was from
LaksMom, sending a “thinking of you” message as she had done every morning for the past several weeks.

At first, he had pictured LaksMom sitting in the lotus position on a big shiny purple cushion, her laptop balanced on her knees, long black hair hanging in a braid down the length of her back, a beatific smile on her face as she chatted away to her online friends. It was a stereotyped vision, to be sure, and likely racist. And completely inaccurate, he thought, now that he knew her better. Now he imagined her in an expensive suit, briefcase in one hand, travel coffee mug in the other, tapping out posts to the forum on her phone before jumping into her car and rushing downtown to her fiftieth-floor corner office. Scrolling further, he saw another post from her, this one directly responding to SoNotWicked’s question.

Tuesday, April 5 @ 9:15 a.m.

SNW, I have to say I’ve been thinking a lot about that myself. I think it’s pretty clear MotorCity’s the all-in type. Same with FosterFranny, though that situation might be a little different—I know FF is planning to adopt those kids out of foster care. I’m interested in hearing from you on this, MotorCity. I know it must be tough to think/write about. But I’m hoping discussing it with us will make your upcoming goodbye easier somehow? Or not *easy* but at least more tolerable?

Scott scrolled further and found a message from another friend, flightpath:

Tuesday, April 5 @ 4:20 p.m.

Also interested in hearing from MotorCity on this—and FF. You all know I think the foster/guardians among the group are the true heroes. I don’t have it in me—too selfish.

Flightpath had joined the forum to find moral support and advice for living with an aging parent after her dementia-suffering mother moved in. She became so close to the regular members, though, that even after her mother died, she still checked in every day. Hers was a voice of reason among the sometimes helicopter-parentish questions posed by the younger members, even if her responses were sprinkled with the tiniest bit of acid. When someone asked a few weeks ago how to help a child finish a third-grade science project, flightpath answered, “Tell him you’ve already passed third grade, then leave the room and let him do it himself.”

She had chided plenty of them off the ledge when they were twisting themselves into knots about something they were unable to offer their children, whether fancy vacations or college educations or, in Scott’s case, a permanent father figure, after Curtis returned to LaDania.

“Knock it off, MotorCity,” flightpath ordered. “You can control one thing here, and that’s what you offer that child while he’s with you. And since you seem to have forgotten what that is, I’ll remind you: a whole year with the best father figure he could ever hope to have. Beyond that, you can’t control anything. Stop pretending you can.”

Another of Scott’s closest forum friends was the brash-talking, sports-loving 2boys. He never married the mother of his son, who left them both shortly after the boy was born. Several years later, he married a woman with a child of her own. A year into their marriage, she was diagnosed with leukemia, and two years after that he was a widower and the single father of two young boys.

He joined the forum shortly after his wife’s death, declaring himself a bachelor for life (“they either take off on me or they die on me; one way or the other, i appear to repel women”). Scott and 2boys bonded quickly over sports, often filling the message board with so many posts about team records and player statistics and draft picks that one of the others would lightly tell them to take it over to a sports blog so everyone else could get a word in. Scrolling a little further on the page, Scott saw a note from 2boys from later in the day.

Tuesday, April 5 @ 4:33 p.m.

@flight—not sure i could do it either. hell, half the time i resent all the time i spend on my 2, and they’re attached to me by blood and law. if it weren’t for the tax break they provide, i swear i might try to unload ’em.

@motor—first things first, you hear about the missiles pettitte threw in the first 2 innings last night? the guy’s on fire; yanks’re gonna take the series this year, i’m tellin ya right now. nah, first thing is l-man, i know that. you know i’m in awe, i’ve said it before. and i’m as interested as the others are in hearing how you’re handling it.

Scott hovered over the keyboard for a moment while he composed his thoughts, and then began to type.

Tuesday, April 5 @ 6:53 p.m.

@SoVERYWicked—that’s what you should be called, for raising this issue right now! j/k—it’s a fair topic, and I know others on the forum are/have been in a similar position and may want to discuss it. Seconds before I logged in, I was listening to LMan reading aloud and thinking how much I’ll miss having that sound in the background as I grade papers or write out basketball plays or chat with all of you. I can’t believe I only have 5 days left with his whispered, stuttered reading.

But to answer your Q, I don’t think of it in terms of what I’ve poured into him and won’t get back. I think of it in terms of what he’s poured into me this past year, and how much it’s gonna hurt to live without it. I’m trying to focus on being happy about what he and I have in store—he’s going to be reunited with his mom, and I’m going to have my own new family.

As I’m sure my wife would attest, though, I’m not doing all that well at keeping the positive focus. I’ve been told I act too much like
a man who’s about to lose a child, and not enough like a man who’s about to gain one.

@LaksMama—you’re the virtual sister I never had. You know that. But you can’t know how much your morning shout outs help, or how much I’ll be counting on those for the next few weeks (well, now you know).

@boys—Post something when you can contribute intelligently. Yanks r done. Tigers alllll the way.

He hit “post” and angled his head toward Curtis, listening.

“You . . . can . . . sit . . . in . . . that . . . care.”

Music to his ears. He logged off the forum and shut down his laptop. “LMan, try that sentence again. I think you mean ‘chair,’ not ‘care.’”

“
LMan?
Since when do you call me
LMan
?”

He flicked the side of Curtis’s head. “I meant Little Man. ‘Chair.’ Try it again.” He flopped onto the couch, a few inches from Curtis, who wriggled closer, pressing himself against Scott’s side.

“You can . . . sit in . . . that . . . chair.”

“Awesome. How about five more pages, then some math.”

“Five
more
? I’ve already
done
five. Laurie only said I had to
do
five. And we might not have time to shoot if I do a whole ten.”

“Well, if five is good, then ten is great. And you want to be great, right?”

Curtis huffed, and Scott shot him a warning look. “
Fine
. But only two math pages would be great, right? Anything more would be
not
so great, I think.”

Scott laughed. “Yeah, two math pages would be great.”

The trifecta of torture—reading practice, math practice and a shower—took too long to allow for a game of hoops. Curtis stood in front of his bedroom closet, sighing as he pulled on his pajamas. “I
told
you it should’ve been
five
pages.” He made a show of looking wistfully at the basketball posters that plastered his wall, then at the indoor hoop
Scott had hung near his closet. Finally, he dragged a set of sad eyes to Scott, who leaned against the door frame and tried not to show his amusement at the melodrama and self-pity the kid had perfected.

Crossing the room, Scott grabbed the well-worn copy of
Stuart Little
from the bookshelf under the window and sat on the bed, stretching his long legs in front of him. He patted the space beside him. “How about we read an extra chapter about the mouse tonight? Or would you rather waste all of our tuck-in time pouting? Because we can do that instead, if you want.” He stuck his lower lip out, exaggerating the child’s expression.

Curtis tried to maintain his pout but was unable to prevent his lips from curling into a smile. “Extra
Stuart
!”

As the boy got settled, Scott pretended to study the cover of the book as he allowed himself a few moments to enjoy the contented silence, the feeling of the warm little body against his, the narrow arm resting on his leg. Curtis didn’t appear eager to interrupt the moment, so Scott rested his chin on the boy’s head and let his gaze move slowly around the room.

It was the ultimate little boy’s room: sports posters on the walls, an assortment of race cars, Legos and army men scattered on the wooden floor. Two rubber dinosaurs lay on their sides on an area rug designed to replicate a city map. Scott and Laurie had listened from their room as the dinosaurs decimated the city before school that morning. The brutes sent the city’s Lego occupants fleeing over the rug and under the bookshelf. A few made it as far as the closet, whose open door revealed an overflowing hamper and some very poorly hung clothes. A unit of the army had evidently tried, and failed, to protect the city; green limbs poked out from under one of the dinosaurs and Scott noticed a few deserters cowering among the books on the bookshelf.

The wiggling beside him told him it was time to read. He opened the book, gingerly retrieving the wrinkled photograph that marked the place where they had left off last night. The picture showed Scott and Curtis, huddled together on the bed as they were now, the then-brand-new
Stuart Little
in the boy’s hand. It was Curtis’s first night with them and Laurie had taken a million pictures to mail to LaDania and Bray, to show them Curtis was doing fine in his new, temporary residence. Curtis had asked for a copy, and it had served as their bookmark ever since.

As Scott was turning to set the picture on the bedside table, a small hand reached out to stop him. “Can I see it?”

Scott handed the picture over and the boy held it gingerly in both hands for a few seconds before tracing a finger slowly around the outline of the two images. “I’m gonna miss you, too,” he said. An answer to what Scott had said in the driveway hours earlier. “I love my mom, but . . .” He ran a pajama sleeve across his nose and mouth.

“Of course you do,” Scott said, kissing the boy’s head. “And the fact that you’ll miss me doesn’t mean you don’t love her, or you love her less. You can love both of us, the same way I love you and Laurie. And Bray. You’re not doing anything wrong.” He pulled Curtis closer. “I’m going to miss you more than I can tell you. But I’ll always be right here. And you can come over anytime. I’m counting on it. Who else am I going to wipe the court with?” He nudged the boy in the ribs and smiled.

Curtis giggled, nudging Scott back. “Yeah, but if I bring Bray with me,
you’ll
be the one being wiped
all over
the court.”

“Well, you got me there. But bring him anyway. You two are always welcome here.” He gave the boy’s shoulder a squeeze. “Always.”

Curtis sniffed and dragged his sleeve across his nose again before handing the picture over. While Scott was reaching to put it on the table, he felt fingers poking his armpit. He whipped around, grabbing the mischievous hand in his.

“Are you . . . tickling me? Are you saying, basically, that it’s tickling time? Because you know if you tickle me, that’s the message you’re sending.”