Once Upon a Wish (39 page)

A few months before, Tien had slowly placed his hands, palms down, on the flat, hard, wooden surface of a table in the middle of
the gymnasium. Blocking out the stares of his teachers, the voices of other performers, Tien slowly pushed, the strength of lifting all his weight shaking in his arms. Legs moving toward the ceiling as if being pulled by rope, Tien’s body became a flawless, still line as he perfected his well-practiced handstand.

He held his position as the teachers of his circus class stared, his sweat dripping, before slowly, gracefully lowering his body and standing upright on the ground to receive smiles and applause. The teachers, who were part of Splash Circus, a group of young performers that entertained audiences throughout the Bay Area, were auditioning for new members. They wrote quiet notes as Tien prepared for the next act in his audition. He walked to the long, thick ropes hanging from the ceiling and grabbed on.

Looking up, he focused as one hand reached above the other, one at a time, slow and meticulous, until he reached the top. Using the same strength it took to climb, Tien slowly, gracefully, lowered himself down the length of the rope. He climbed up, down, up, down, demonstrating the poise and endurance of any other nine-year-old circus performer before moving on to his final audition performances.

From the age of three, Tien had practiced Capoeira, a Brazilian art form combining martial arts, music, and sport, and the technique, dedication, and strength it gave pounded through his body as it flipped, end over end, hands leading the way, across the floor in perfect back handsprings, twirled with perfect cartwheels past the teachers, and balanced perfectly on the shoulders of others during partner acrobatics.

When he was finished, Tien stood proudly before his teachers, panting and smiling, hoping they would select him for the circus.

After the audition, Tien gathered his things and walked to meet his parents as a pain, achy and familiar, crept through the heel of
his foot, traveling slowly, purposefully, through its length to his toes. He grabbed at his foot midstep, massaged it quickly as it reached for and touched the ground, and then he grabbed for the other. It was a pain that he had learned to ignore, learned to live with over the past several weeks, because though it would go away briefly, it would always make its return.

He had learned to run through the pain during games of zombie tag at recess with his friends, let it dangle when hanging from the monkey bars, and kick through it during gymnastics and circus class. It would leave and return in the heat of the day as Tien played outdoors with his neighborhood friends, the hot sun pulling at the pain, intensifying it.

His feet would ache during bamboo sword fights and throb during “survivor,” a game he and his friends made up that involved eating cherry plums, sour grass, and dandelion leaves from their backyards in order to survive.

One morning a few weeks after auditions, after learning that Tien had been accepted into the circus, Lillian gently touched his cheeks as his eyes slowly opened from the night. Beneath her fingers, Tien’s skin, warm from sleep, puffed around his chin, his forehead, and the area below his eyes. She squinted and looked closer and felt deeper, as her fingers sank into the soft yet firm skin on his face.

She called Tien’s pediatrician, Dr. Randy Bergen, and scheduled an appointment for later that day. Something wasn’t right. His achy, swollen feet and puffy face were trying to send a message to Lillian and Bruno but not a clear one. Tien was enjoying third grade, loving the math club he had joined, and playing with his friends after school every day—
what could be wrong?

“It’s possible that you have lupus,” said Dr. Vivien Igra from Dr. Bergen’s office, the only doctor available to see them right away.

Lupus
, Lillian thought, her body and heart instantly numb with worry, sickened with fear.
Flannery O’Connor.

Through the American novelist’s words, Lillian had learned in high school about life’s cruelties and hardships, many of them derived from the author’s experience with the same disease—the one with which her son had possibly just been diagnosed.

Sisters from Lillian’s Catholic high school had read O’Connor’s work to their students, opening their eyes to life’s realities, from serial killers to human greed to morality and ethics. The moment Dr. Igra uttered “lupus,” Lillian instantly thought of the fourteen-year-battle O’Connor had with the disease. She remembered how lupus sometimes became a character in O’Connor’s writing because of its dark, cruel existence in her life. At the time, Lillian was intrigued by the disease’s benevolence, its loosened grip on O’Connor’s life during remission, until it took it from her in 1964.

O’Connor’s death was all that Lillian knew about lupus.

She didn’t know that her son’s body was about to turn against itself, eating away at perfectly healthy tissue and functioning organs. She didn’t know the disease’s potential to wipe out any part of the body, from the skin to the joints to its most important organs.

Lillian didn’t know that the rashes forming on Tien’s skin, rashes she and Bruno thought must be from Tien’s allergies to strawberries, chocolate, and citrus—
maybe Tien drank a glass of lemonade
—combined with his puffy face and aching feet were all indicators of lupus.

“Can you move this for me?” Dr. Igra had asked Tien before suggesting he had lupus. She moved Tien’s feet gently, touching the small joints near his ankle bone. He sucked in his breath, pain rolling beneath the doctor’s fingers.

The pains Tien had been experiencing in his feet could have stemmed from anything, Lillian and Bruno had told themselves—playing in the dirt, tripping over rocks, climbing and falling from the
branches of trees. He was a classic boy, an active nine-year-old. He was playing soccer in a summer soccer camp program for the third year in a row, and he was one of his team’s best, most aggressive players.

“Does this hurt?” Dr. Igra asked, tugging at the joints of his hands.

The small bones throbbed with the doctor’s slightest touch.

Aches in the small joints of the hands and feet, rashes, a swollen face—lupus.

She ordered labs to be done, an Antinuclear Antibody (ANA) test that would indicate the presence of an autoimmune disease, so Lillian took Tien to get his blood drawn later that day.

“We’ll call you with the test results,” Dr. Igra said, adding that, if the ANA test came back positive and they determined he had lupus, treatment would involve ointment for the rashes, medicine for the aching joints. Simple.

Even if the results came back positive for this disease with no cure, the treatment would be easy and Tien would be fine. Lillian was comforted by the doctor’s words. O’Connor’s suffering would not be her son’s.

The next step was waiting, the step after that, dealing with those results. Lillian had built her life around taking one step at a time—it was the only way she knew to function, a way of life echoed from past generations in her family. As a young girl, Lillian’s mother had shared stories with her about the hardships her mother and grandmother faced in China—hunger and war—and the way they shepherded their families, did what they needed to do, and faced what came their way with unending strength and courage.

Having never thought about where it came from, Lillian journeyed through life the same way, from the time she went through law school in the early 1980s and faced the challenges of being a female law student at that time to the situation they were in now.

This would be no different.

For past generations, taking one step at a time meant figuring out how to put meals on the table. For Lillian during law school, it was studying as hard as possible and passing the bar exam. Now, it was getting through one test, one lab, one result at a time.

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They got Tien’s blood drawn for the ANA test on Father’s Day 2008. After their hospital visit, they went out to celebrate the day with brunch in Walnut Creek, a city near their hometown of Berkeley. As waiters placed plates heaped with delicious-looking food in front of them, as Bruno opened his handmade card from the kids, Lillian had to work every second of that day to keep her mind present—there with her family, not at the hospital where her son’s blood was being processed, not drifting into the unknown future.

She spent that day and the next living with her mind in two places, split between thoughts, consumed by two different worlds—the world where Tien lived as a healthy child, growing and exploring, loving life, and the other world with the disease that killed Flannery O’Connor.

Lillian blinked at the thought—hard—and refocused, turning toward the laughter pouring from the kitchen as the sound, blending with the scent of fresh fruit, teased her senses. Peeking around the corner of their home’s small kitchen, she heard the sizzle of bananas dancing in a butter-lined pan as Tien and Bruno tossed and turned them, perfecting Bruno’s fried banana recipe.

Cooking together in their pajamas, whether making fried bananas late at night or breakfast crêpes first thing on Sunday mornings, which they had done together since Tien was six, was his and Bruno’s favorite pastime, their most treasured time together aside
from assembling five-hundred-piece puzzles and playing complicated board games.

Once the bananas were on the plate, Tien, who enjoyed presenting meals almost as much as he did creating them, shook the bottle and formed a whipped cream happy face over the top of the bananas; one that made Bruno and Lillian laugh before eating the dessert and heading to bed.

Hours later, in the middle of the night, the phone rang. Lillian got up to answer it, her voice heavy with sleep, eyes only half open. “Hello?”

“I’m calling from Kaiser regarding your son’s labs. You need to get him to the nearest emergency room right now.”

Her eyes shot open.

The words
high potassium
snuck into her mind, dancing with her thoughts, distracting her panic, but those words and
emergency room
were the only ones she managed to hear.

We just need to get him in for some medicine that will lower his potassium
, Lillian repeated to herself as she hung up the phone and rushed to the bedroom to tell Bruno about the phone call she had just received. Though it came sooner and more abruptly than expected, this was their next step.

Get Tien to the hospital.

Lillian and Bruno tried nudging seventeen-year-old Yune and fifteen-year-old Vanina first with slight nudges that didn’t rouse them, and then they pushed harder, keeping fear as far away from their voices as possible as they said softly into quiet rooms, “We are taking Tien to the hospital.”

“He’ll be fine,” Lillian reassured when the eyes of her two older children looked at her with question and concern. “His potassium is high, and they need to bring it down.”

She hoped it was as simple as that.

Tien crawled into the backseat of their car, and after placing a jacket over him, Lillian and Bruno drove straight to Kaiser Permanente Oakland Medical Center where they admitted Tien and doctors immediately hooked him up to a blood pressure machine and a heart monitor. Tien had never in his life had more than typical childhood illnesses—colds and the flu.