Julia flinched at the analogy.
“It wears on you,” Hannah continued. “Pep talks work for a while. Affirming columns like yours and employer perks only carry you so far. I convinced myself they were something less than fellow human beings.”
“Sheep offering themselves in sacrifice?” Julia filled in the blank.
Hannah nodded slowly. Shamefully.
Nervous about the direction of the conversation, Julia’s tone altered from that of confidential confessor to that of suspicious reporter. “What’s your stake in the Santos lawsuit?”
“My stake?” Hannah seemed to notice the change in her guest’s tone.
“Are you a co-litigant? Do you stand to receive any payment if Jeremy wins?”
“He has won.”
“I mean if he wins the appeal process.”
“No. I have no financial stake in the case whatsoever,” Hannah defended herself. “In fact, my husband could lose his biggest client when this story breaks. That’s why I’ve tried to remain anonymous.”
“What does Philip do?”
“He’s a process efficiency consultant for NEXT clinics.”
Julia sat in silence, absorbing the revelation.
“He knows what you’ve done? Knows you’ve been helping Jeremy?”
“Of course,” Hannah replied. “He agrees with what the suit demands.”
“Demands?”
“Have you read the details of the case, Ms. Davidson?”
“Most,” Julia bluffed.
“Then you know about the gaping hole in the permissions process. It’s easier to schedule someone for a transition than it is to book an airline ticket.”
“And?”
“The current procedures don’t protect volunteers from coercion,” Hannah explained. “I estimate two-thirds of my clients participated against their will.”
“They sign an approval form, usually in the presence of a spouse, child, or parent. That seems like adequate protection to me.”
“You mean the person exhausted from managing their care? The person likely to inherit their assets? The one who has put his or her life on hold to help a parent delay the inevitable?” Hannah looked like a teacher scolding a lazy student. “Do you honestly expect that person to discourage a parent’s transition?”
The possibility of such subtle coercion had never occurred to Julia.
“Would you put your career on hold if your parents needed your full attention for who knows how long?” Hannah continued. “What would you do if given the option of keeping yourself alive for another five years or freeing the money to fund a grandchild’s college education? How would you feel being called a debit, knowing others consider you a liability rather than an asset? Yes, they grant permission. What else can they do?”
Sheep to the slaughter, Julia remembered.
The Antonio Santos case involved much more than a distraught mother’s accidental death or a clerical slipup in the massive transition machine. This story was not about a minor casualty, but the fate of a program contributing hundreds of billions of dollars in revenue to the federal bottom line.
It was more than Julia wanted to know.
Chapter Nine
A haggard woman looked up slowly from her screen at the same impatient man standing in front of her receptionist window. “Once again, Mr. Tolbert, we will call your name when the doctor is available to see you.”
For the third time in an hour, Kevin returned to the waiting room chair beside his wife Angie. Neither his charm nor his influence could overcome the reality of physician shortages that had turned doctor visits into an all-day outing.
“Welcome to my world,” Angie said, gently poking her husband in the side. “You’ll just need to learn some patience, Mr. Congressman.”
It was a virtue Kevin had rarely required. He had grown accustomed to making things happen quickly, squeezing a two-year MBA program into eighteen months, acquiring and selling three successful businesses before turning thirty, and winning national office after a single campaign. Like a driver hitting a dozen consecutive green lights, he had almost forgotten how to use the brakes.
“I don’t do patience well,” Kevin reminded his wife needlessly. “Is it always like this?”
“No.” Angie smiled feebly. “Only on the rare occasions I can actually get an appointment.”
The door opened and a nurse holding a tablet read the next name. A woman on the other side of the room gratefully lifted her hand like a schoolgirl timidly seeking permission to use the restroom. Moving an infant from her lap to her shoulder, the mother inched through the door as Kevin watched the light once again turn red.
Kevin noticed Angie looking down at Leah, who was still sleeping in her carrying seat. He could sense the anxiety she had shelved long enough to ready the other kids for their playdate at a friend’s house. Angie had apparently used the sudden quiet to indulge another fear.
“Do you hear a difference in Leah’s cough?” she asked hesitantly. “It seems deeper than I remember in Tommy or Joy.”
“Angie,” Kevin answered in the kindest tone he could muster, “we agreed to avoid speculation until we know something.” She had never actually agreed, only adjusted herself to his inability to talk about the one thing that had been on her mind for the past four days.
In truth, the same questions tormented them both.
He felt she needed a new distraction. “Troy sent me an interesting analysis of the census data. I think he found something important.”
Angie forced her usual cheer. “That’s great, sweetheart.”
He sensed her veiled indifference, but continued to avert silence. “There appear to be needles of economic strength buried in the haystack of dismal trends. Troy calls them bright spots.”
“As in optimistic?”
“Sort of. He borrowed the phrase from a case study we both read during grad school. About fifty years ago a nonprofit group was given six months to solve child malnourishment in poor Vietnamese villages. A crazy deadline since experts had identified a complex range of systemic problems intertwining to cause the epidemic.”
The look in Angie’s eyes told Kevin her mind had already started to drift.
“Anyway, one guy decided to cut through the complexity that had paralyzed the experts. He researched what the mothers of the few healthy kids were doing differently from everyone else in the villages. He figured if some kids thrive despite identical poverty, then there might be hope for the other kids.”
The words hope and kids pulled Angie back.
“They discovered several simple habits among those families that made a huge difference.”
“Like?” Angie asked.
“Like mothers dividing their children’s daily rations into four meals instead of two. They also violated cultural norms by feeding their kids certain types of food that society deemed low-class.” Kevin’s excitement peaked as he came to the punch line. “A book by Chip and Dan Heath called these families bright spots because their success became a model for large-scale solutions.”
“Always trust moms over the experts,” Angie teased.
“You’re more right than you know. If Troy’s analysis is accurate, moms will be the key to solving our long-term deficit problem.”
Her confused expression nudged Kevin to the bottom line.
“It looks like the pockets of economic stability and growth are the areas with the highest fertility. We seem to have found our nation’s bright spots. We just need to find out what they do that’s different from everyone else.”
“Leah Tolbert.” The interruption reminded Kevin of his impatience.
“Finally,” he voiced too loudly.
“The doctor can see you now.” The nurse held the door open as Angie reached for Leah.
“I’ve got her,” Kevin insisted.
* * *
Leah whimpered on cue, as if understanding the doctor’s diagnosis better than either parent could.
Kevin reached deep but cou
ld not recall ever having heard of a disorder labeled fragile X syndrome. “I don’t know what that is.”
“Not many do these days,” the doctor continued. “In the old days a small percentage of the population had something they called intellectual disability. Your grandparents would have called it mental retardation. But the disorder has become extremely rare.”
“So it can be cured?” Angie asked expectantly.
Dr. Chapman paused. It must have been many years since she last discussed such a disheartening diagnosis with uninformed parents. Genetic prescreening had virtually eradicated fragile X from the population in developed nations; it surfaced only in extremely religious families who bypassed a process that kept defective eggs from implantation. But neither Angie nor Kevin seemed the extremely religious type.
“Can I ask why you were unable to do genetic prescreening on this pregnancy?” Dr. Chapman asked Angie.
“Why do you ask?” Kevin intercepted, hoping to absorb the predictable assault.
“Well, it’s highly unusual to decline the procedure.”
They had heard the speech before. Screening promised to eliminate the most severe genetic defects, allowing parents to produce offspring that inherited only their most attractive features and least vexing defects. Apparently this disorder, whatever it was, fell in the latter category.
“We consider life a gift to receive rather than a product to select.” Angie’s intensity surprised Kevin. He had used the same words with her six years earlier when they decided to start a family. She seemed excited about genetic screening as described by her obstetrician. Common sense and practice said, “Do it.” Kevin’s upbringing said, “Don’t.” One argument and two sleepless nights later she relented, which had resulted in now-five-year-old Tommy, whom Angie wouldn’t trade for any genetically optimized kid on the planet.
The doctor’s expression fell short of condemnation, landing on pity. “I meant no offense.” She returned to Angie’s question. “No, it can’t be cured.”
The words hit hard.
“But you said it had become extremely rare…” Kevin’s own realization cut his comment short. None survive the screening process.
Caressing Leah’s tiny fingers, Angie breathed deeply. In that moment, all her anxiety seemed to dissipate into clear, motherly resolve. “Tell us what we need to know.”
“The effects vary a great deal from person to person,” Dr. Chapman explained. “I’ve only seen two cases myself, both in adults. Your daughter may display irregular physical characteristics.”
Both Kevin and Angie looked in Leah’s direction. Neither knew what to notice. They turned back to the doctor.
“Most likely peculiar facial features that may become more pronounced as she ages, including an elongated face and slightly enlarged ears.”
The doctor glanced down at the cheat sheet on her digital pad. “Is she crawling yet?”
“Some,” Angie replied hopefully.
“Well, she probably won’t walk as early as normal kids. And there will most certainly be mental impairment. We’ll want to measure Leah’s cognitive abilities when she’s older, but most fragile X children possess about half the average IQ.”
Angie and Kevin looked at each other.
“Will she be able to attend school?” Kevin wondered aloud, willing himself to remain strong for Angie’s sake.
“Possibly, although you’ll be hard-pressed to find a competent program since the disorder has become so rare. Public schools cut special education funding back in the early twenties.”
“Marriage and family?” Angie asked.
“Unlikely. But I see nothing to prevent your daughter from enjoying a vibrant sex life.”
Both Kevin and Angie winced at the suggestion.
The doctor continued, but neither heard the rest of her summary. Kevin and Angie would take time to understand the details of Leah’s disability in days to come. For now, they tried to absorb one simple reality: Our daughter will never have a normal life.
Neither would they.
Chapter Ten
Julia reached frantically toward the silhouette of a hand as it withdrew from her extending fingers. Despite a vivid brightness that seared the vision of her sleeping eyes, she noticed only shadows. A dark, masculine form appeared stretched and diluted. Its comforting presence ebbed away while something mysterious pulled her downward toward a brutal, merciless place.
She inhaled violently like a child desperate to break free from an outbound ocean current, then screamed at the shadow drifting from view.
“Where are you going? How can you leave me like this? Help me!”
She heard a voice.
“It’s OK, sweetie. Wake up. You’re all right.”
Julia’s eyes opened to the welcome sight of Maria. Overpowering her confused anxiety, she quickly grasped what had happened. Maria had heard the screams from the next room, startling her into action. Julia’s relief met embarrassment. She reluctantly accepted her sister’s nurturing embrace.
Moments later, Julia sat propped against her pillow, hugging both legs tightly against her chest. She habitually retrieved the pen and pad she had used in the past.
MAN
SHADOW
FEAR
ANGER
She added a single word.
ABANDONED
Part Two
Chapter Eleven
“I can’t keep taking you to the doctor, Mom!” Matthew Adams barked after reviewing the $1,152 bill for three visits to treat what had turned out to be phantom ailments.
“I think she likes the attention,” the nurse had explained.
Seeing tears form in his mother’s eyes made Matthew feel like a heel. He reached across the table to rub her frail arm while handing her a partially used tissue.
“Here you go.” He hated making her cry. But he didn’t know what else to do. He was losing his battle to protect her dwindling assets.
“I’m sorry, Matthew,” she said.
“The doctor said there’s nothing wrong with you, Mom,” he continued gently. “Just remember to take your pills and everything will be fine.”
But he knew she would not remember her pills any more than she could remember other important details. She became confused over the simplest tasks, like trying to recall the two-word voice command that would dial his number. It caused her to panic whenever he left for work or to run errands.
The sound of two quick raps at the door announced Donny’s arrival. “Sorry I’m late,” he said while letting himself in. He began removing a coat. “Low on gas. Had to stop on the way.”
“No worries.” Matthew was just grateful Donny had kept his promise. “Thanks for coming early. I really need to snag some extra hours.”
In truth, Matthew needed a break. That’s why he’d spent the money to hire a second part-time parent-sitter, even though competition for senior-care workers had driven hourly rates to an all-time high. The income from Grandpa’s life insurance covered essentials like rent, utilities, groceries, and basic digital access. But it didn’t cover extra help. Last month he’d paid a portion of her prescription expenses out of his own paycheck. A waste, he thought, since she seemed to be getting worse instead of better.
“Enroll in college,” his mom used to say. “Use the money for tuition. My son should be a professor.”
She knew he could do it.
He no longer even hoped.
Before heading to work, Matthew began a morning ritual his mother had come to expect. Retrieving a set of rosary beads from the kitchen counter, he placed them carefully in her left palm. Engulfing her tiny fist with his own, he knelt down in front of her and looked in her eyes. “I’ll see you soon, OK, Mom?”
Peering warily at Donny, she concentrated long enough to recognize the former stranger. She gave her son a hesitant but reassuring smile.
“I’ll be back around four thirty,” Matthew informed Donny on his way out the door.
* * *
By the time
Matthew arrived at work about a dozen students were already sipping drinks while scanning the day’s assignments or reading social media updates. He slid past a sofa and three tables, placing his backpack behind the pastry counter before starting another day retrieving empty mugs and tossing coffee-stained napkins.
Glancing around the room, Matthew recognized three of the eleven students: nameless acquaintances who acknowledged his presence with a silent nod the way actors condescend to greet a helpful stagehand. He knew that his role, like those of the librarian and cafeteria workers, was trivial compared to those of the tuition-paying students and tenure-earning faculty. A quick mental tabulation said the room represented nearly six hundred thousand dollars in annual tuition, not including room and board, tech access fees, or specialty drinks.
Slow day, he thought.
“Hi, Matt,” came Sarah’s warm but apologetic greeting. “There were seven or eight frat parties last night. I think it’s gonna be slow all morning. Would you mind waiting to sign in until your regular shift? Or maybe even third-period rush? Kelly and I have it covered.”
Just like that, his income dropped; it was the third time this month a shift manager had casually reduced his hours. Sure, he would work the guaranteed twenty hours this week, but he needed more.
“I’ll make extra income to cover an additional sitter,” he’d told himself in October. He had yet to make good on the promise.
Never one to show his disappointment, especially to Sarah, Matthew glanced at the clock. Ninety minutes until third period.
“Mind if I camp out at my usual table until then?” He didn’t need to ask, but wanted to keep the conversation going. “I can catch up on research for my project.”
Both Sarah and Matthew knew that he had long since abandoned his formal education. It had been three years since he completed his fifth and sixth community college courses, environmental studies and a comparative religions class called Our Spiritual Impulse. His “project” nibbled around the edges of both by reading this and that tidbit to become a self-appointed expert in the nonexistent field of “spiritual environmentalism.”
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