Once Upon a Wish

by Rachelle Sparks

  He could not bring himself to tell her to go with them. They were only there to comfort her. The pain he felt swelled in his throat. He paused, gained control, and continued.

  “Squeeze my hand if you can see the angels,” he said.

  Meera’s hand, small and fragile, gently squeezed.

  Alex looked to his wife with wide eyes, mouth opened.

  “She squeezed my hand!”

  Her brain was not damaged. A heavy current of excitement and fear flowed through him. The angels were there to guide her, but when Meera woke later that day, he knew she had chosen not to follow.

  Meera was responding to commands and began communicating with her parents by writing notes on a Magna Doodle, a magnetic drawing board that a nurse had given to her. When not answering questions about how she was feeling or asking for ice chips, Meera would draw hearts and write “I love you” to her parents.

  The third day after her arrest, Meera was off the breathing tube, reading books, talking, and eating spaghetti and meatballs. Contrary to her doctors’ predictions, her heart and lungs were functioning on their own, and Meera became known as “Miracle Girl.”

  That night, Child Life volunteers from the hospital came to let Meera know about the Make-A-Wish Foundation and that any wish she desired would be granted.

  The Make-A-Wish Foundation, Alex thought, staring at the volunteers with resentful eyes. That’s for kids who are at the end of their rope. I don’t want to be involved with …

  “What do you want?” Nita asked excitedly, her eyes wide with anticipation. She scooted toward Meera and took her hand. “You can have anything in the whole world!”

  Alex stared at Nita’s hopeful face, watched as her determined eyes studied their daughter’s thoughtful expression.

  She’s right, he thought. Meera deserves a wish.

  “You can go to Disney World, meet a celebrity …” one of the volunteers started before Meera answered.

  “I want to plant a tree in the rain forest,” she said with finality.

  “Oh, that’s a great wish!” the volunteer said. “What made you choose that?”

  “I want a chance to help stop the deforestation of the rain forests that could potentially hold the cure for my disease,” Meera said with more maturity than most eleven-year-olds. “I know that planting one tree won’t stop deforestation, but if each one of us does our share in planting a tree, we could have a big chance of saving the rain forests all over the world.”

  Nita and Alex sat in silence with the volunteers. It was the most selfless, generous request the volunteers had ever heard, and Nita and Alex smiled with pride.

  Meera imagined her hands in the soil, surrounded by the floral scent of tropic air, her tree becoming evidence of her contribution to humanity for many generations. She had never been to Hawaii, but she imagined that the beauty of the island, the peace and smell of the ocean, would be no different from that of Shat Dahabee. Eyes closed, she smiled at the thought.

  Meera remained stable for two more days, but by the third, her oxygen saturation numbers had dropped gradually throughout the day. By early the next morning, doctors had decided to put the breathing tube back in and asked Alex and Nita to step into the waiting area.

  He comforted his nervous wife with a hug and said, “They’re just putting the tube back in. We’ll be with her again in just a few minutes.”

  The moment Alex and Nita had met Dr. Thompson, they instinctively knew she was one of those doctors who listened. One who paid close attention and spoke with patience, one who cared with a kind heart. They knew she watched her patients’ statuses and conditions closely from monitors in her home. When Dr. Thompson wasn’t at the hospital, Nita and Alex knew she was watching.

  They had known Dr. Thompson for only a day when she saw Meera’s oxygen saturation levels drop rapidly from her home monitor. A clear indicator of possible PH crisis, Dr. Thompson raced to the hospital and walked into the waiting area. Her presence brought them comfort, but her words left them panicked.

  “Her lungs aren’t working,” Dr. Thompson said, offering no other information. Alex could sense she was holding something big back.

  “Well, what’s going on? How is she doing?” he nearly shouted.

  “She’s in cardiac arrest and doctors are performing CPR,” Dr. Thompson said hesitantly.

  She was keeping something from them.

  “Is there something we can do, any kind of machine that can breathe for her?” he asked, almost reading her mind.

  She nodded her head. “It’s a machine called ECMO that will take over and function as her heart and lungs.”

  Why didn’t you tell us that? You’re wasting time! Alex wanted to scream.

  Her reluctance came from a place of concern. This was a drastic measure, and she reluctantly sought their approval.

  “Do it,” they said in unison.

  “Just keep her alive,” Alex demanded.

  Dr. Thompson ran down the hall, leaving Alex and Nita alone in the waiting room, where they wrapped their arms tightly, desperately, around each other and fell to the ground sobbing.

  5

  The longest hour of their life passed before Dr. Thompson returned to tell them that Meera was stabilized and successfully hooked to the machine, and that they could go in to see her.

  They walked slowly into a large room, half-filled by the machine. Meera was lying beside it, hands by her side with her head tilted awkwardly away from them. Her blood was leaving her body, circulating through the tubes of the machine, and re-entering, oxygenated and filtered. They watched, frozen, as red streams flowed in and out of their daughter. They walked in silence through the cool, iron air and sat by her side, staying there for the next several days.

  After all the stress her heart and lungs had been under the past couple of weeks, doctors let them rest for five days before Dr. Barst’s orders came to remove her temporarily from the ECMO machine. She did not want Meera’s organs to give up the fight to live on their own.

  Alex had done his best to strengthen and guide Meera’s spirit by bringing her mind back to Shat Dahabee through his stories, letting her toes touch the sand, filling her lungs with her mind’s memory of the ocean air, but now it was time for her body to follow.

  “Temporarily removing Meera from the machine has been a success,” said Dr. Thompson, who had been working hand in hand with Dr. Barst since Meera was admitted to Children’s Medical Center of Dallas. “So now it’s time to make a decision.”

  The doctors at Dallas Children’s had done nearly everything they could for Meera. They could keep her alive but nothing more. They could not heal or save her.

  Nita remained by Meera’s side, and Alex roamed the halls, tormenting thoughts circling, haunting his mind.

  Keep her in Dallas and watch her die or risk transporting her?

  This was the decision they had to make.

  For the past three years, Meera and either one or both of her parents had traveled every couple of months to New York to see Dr. Barst, world-renowned for her work with PH. She had run endless tests, placed Meera on different medications, and monitored her from 1,500 miles away—but now she needed Meera there.

  You know there’s a good chance she is not going to make it, one doctor’s words echoed viciously in Alex’s head.

  Though her organs had grown strong enough to function temporarily without the machine, her lungs continued to fill with blood; her kidneys were failing. With no more options in Dallas, getting Meera to New York seemed to be their only option.

  But what if something goes wrong on the flight? Alex thought, pacing. He hadn’t had more than an hour of sleep at a time in a week. He had never felt physically or emotionally weaker in his entire life. He wandered while Nita stayed by Meera’s side.

  If we keep her here, she probably won’t make it, he analyzed. Something could go wrong on the flight. But there’s not much else they can do for her here.

  These thoughts, these realities, crashed vi
olently in his head, pulling at him, tearing him apart.

  I can’t make this decision! he wanted to scream.

  Alex had been a data analyst for fifteen years, and plugging numbers into spreadsheets, comparing historical data, creating root cause analyses were the only ways he knew how to deal with problems, to find solutions. He had spent countless hours on his laptop, by Meera’s side, researching PH, understanding her condition from its core.

  He wanted to know why she bled the way she did when she was first admitted to the hospital. He found several causes and traced them, filling in the blanks of his hand-drawn, fish-bone diagram. He created reports using reverse analysis and used his skilled method of data mining to answer questions. He had watched Meera’s stats on every monitor, interpreted their sounds with his eyes closed, and created an internal database containing all of her vital statistics.

  It had been his only way to process their situation, to feel any sense of control over it, but now none of it mattered. His knowledge of her numbers, the answers he had found, the research he had done, the charts he had created, none of it could answer this question for him.

  Tormented by his thoughts, Alex staggered into a waiting room chair and sat, alone, embraced by the uncomfortable silence of the chilly room.

  What do we do? he asked himself as his head fell into his hands. His and Nita’s support system—their family and friends—was in Dallas. They didn’t know a soul in New York City. If they were going to lose Meera, they wanted to be in Dallas, surrounded by family and friends, rather than losing her during or after transport to a city fifteen hundred miles from home.

  As Alex cried, the sound of footsteps echoing in the quiet hallway made him look up. Meera’s elementary school principal, Mark Speck, walked toward him, a comforting smile on his face, together with the school nurse, Megan Schuler, and the after-school coordinator, Mary Jeanne Higbee, at his side. They had made several visits to show their support for Meera, and in this moment of agony, this raw feeling of anguish, they were exactly who Alex needed.

  “I can’t do this,” he wept. “We need to decide to keep Meera here or transport her to New York, and we could lose her either way. I can’t do this. I don’t know how to make this decision.”

  “Would you like us to pray together?” Mrs. Shuler asked, hugging Alex then looking at him through tears.

  “Yes, please,” he managed, and they took one another’s hands and bowed their heads.

  “God, we pray for Meera, and we ask that you guide Alex and Nita,” Mr. Speck said. “Help Alex and his family make the right decision.”

  Alex’s body warmed, his heart ached, and his mind cleared.

  He had his answer—get Meera to New York.

  It was the clearest message, the most reassuring and overwhelming feeling he had ever experienced, and nothing inside of him doubted the decision he believed was just made for him. Nita agreed, knowing the risk of transporting Meera but finding some hope that, if they made it to New York, Meera could survive.

  6

  On transport day, nurses wheeled Meera, intubated but awake and alert, in a stretcher through the double doors and into the sunshine for the first time in weeks. She had forgotten the smell of Texas air, so she took it in, one shallow breath at a time.

  “Wind in my face,” she wrote on the Magna Doodle before closing her eyes and tilting her head toward the sky, letting the sun calm her, the breeze soothe her. They arrived at the airport safely, and Nita and Meera boarded the plane. Limited space forced Alex to make the flight commercially.

  Shortly after takeoff, he gripped the armrests of his chair as the force of a sudden drop thrust his body from his seat, shoving the belt into his gut. The left side of the plane dipped, the right side soared, as it shook furiously before freefalling and leveling momentarily. It swayed and jumped in the wind, danced in the clouds, for the next four hours.

  “God, please take all the turbulence from Meera’s plane and put it on me,” Alex begged, waves in his stomach crashing as he imagined his daughter’s plane plunging and swaying to the sky’s relentless, violent rhythm.

  After all she’s been through, just get her to New York, he pleaded.

  When he arrived in New York, Alex was relieved to hear that Meera’s plane, flying at a much lower altitude, experienced very little turbulence and would arrive shortly. He walked through the hospital as he would his hallways at home and tapped on the office door of Dr. Barst.

  After so many years of traveling to see her, just being in Dr. Barst’s office, in her care, relieved some of the pressure in Alex’s chest. He could finally start to breathe.

  Nita and Meera finally arrived, and ten minutes after settling her into her new hospital bed, Meera suddenly clutched the metal rails as the voices of her family and chatter from the TV blended to the background of her mind’s panic.

  I can’t breathe, she thought. I can’t breathe!

  Her body stiffened with determination to take another breath, but invisible hands wrapped themselves around her small neck, squeezing, suffocating. She thrashed as air crept slowly, mockingly, through its straw-sized passage before Meera’s body went limp, her fight dead.

  Doctors from the ICU rushed in with a balloon and pumped air into her lungs, but the resistance was as great as the force. As air seeped out, they quickly and frantically hooked Meera up to an oxygen machine, started the monitors, and hovered over her blue body as Alex ran from the room.

  “We should have never brought her here!” he yelled in the hallway, punching his fist into the wall. “This is all my fault!”

  His shouts became whispers.

  “This is all my fault. All my fault,” he repeated, pacing the halls, hands in his hair.

  “She’s going to be okay!” Nita said.

  How are you always so sure?! Alex wanted to scream.

  But once again, she was right. Doctors discovered a blood clot in her breathing tube that was blocking her airway, and after it was out and a new tube was in, she could breathe, her face regaining its beautiful color.

  Okay, we made the right decision, Alex assured himself, keeping his mind in the moment. He couldn’t let himself imagine what might have happened if the incident had taken place in the air—in the small confines of an airplane with fewer doctors and less equipment than the hospital they were in now.

  Shaking, Alex sat silently, internally thanking God for those ten minutes He had spared.

  Over the next several months, Meera had her good days and her bad, an emotional mixture of successful stats, blood transfusions, surgeries, and steadied and crashed oxygen levels. Alex traveled between Manhattan and home, maintaining his career and visiting Zane, who was staying with his uncle in Dallas. No matter which city he was in, Alex found inspiration in the sunrise of the Dallas or the New York dawn. As the sun crept into darkened skies every morning, subtle glow leading the way, Alex prayed deeper and harder than he had ever prayed in his life. He knew God was taking those prayers with Him every night with the sun, delivering hope and assurance with each morning rise.

  Through prayer, he kept Meera alive during a series of close calls—a nurse accidentally switching the medicine in her IV, leading to lung failure and paralysis of her GI tract, and her appendix rupturing less than a week later.

  Zane flew out to New York to meet his family for the holidays, and on New Year’s Eve, Alex and Nita looked out the window to the celebration below with a renewed sense of hope.

  “Two-thousand-seven is behind us,” Alex said, his arm wrapped around Nita’s shoulders. He rested his head on hers as he looked down at Meera in her wheelchair, her little brother by her side. They were a complete family again. “This is a new beginning for us.”

  He felt it with every crash and color of the dazzling fireworks show in the distance. The black sky sparkled with vibrant colors that eventually faded and vanished into the night. They could hear the cheers and shouts floating from Times Square, and they felt as though they had something to celebrate, t
oo. Meera had held on for this long—had survived two cardiac arrests, a disconnect from a life-supporting breathing machine, a risky transport, paralysis of her GI tract, and a ruptured appendix—and they knew in their hearts that there was nothing their daughter couldn’t survive.

  But they were not at the end of their journey, and they knew it. Still supported by machines, Meera faced two surgeries in March that, if successful, could lead to her recovery.

  When Meera was still in Dallas, doctors inserted a temporary Flolan line to keep the blood vessels in her lungs and throughout her body open and flowing, which meant limited physical activity and little exposure to water.

  “She can’t go swimming anymore?” Zane had asked sadly. Some of his favorite memories were playing Marco Polo with Meera in their community swimming pool, having races, and seeing who could hold his or her breath longer under water.

  Saddened by the news, he wrote in a spiral notebook, “I wish for my sister to get off of Flolan so that she can go swimming again.”

  In New York, doctors removed Meera’s appendix and placed a feeding tube in her stomach during the first surgery and inserted a permanent Flolan line during the second. She would always have to wear the Flolan pump, an intravenously administered drug, meaning her brother’s wish would never come true.

  The last time Meera ever swam with her family was the summer before she became ill.

  They had traveled to Dinosaur Valley State Park in Glen Rose, Texas, when Meera was eleven and Zane, seven, for their first-ever camping trip. They hiked along the Brazos River, searching for fossilized dinosaur footprints in the slate-colored stone.

  Meera stopped at every track, placing her foot next to the giant, three-toed prints as though comparing them to famous hand-prints on the Hollywood Walk of Fame. They followed the tracks to the riverbank and found a deep pocket called the Blue Hole, where kids jumped from cliffs and families splashed beneath the hot, Texas sun.