Once Upon a Wish

by Rachelle Sparks

  After Garrett’s Wish trip, he started speaking for Make-A-Wish Foundation functions and fundraisers, helping to raise money and spread awareness of the impact wishes make in children’s lives. He gives credit to his doctors for his gift of mobility, his miracle, and thanks Make-A-Wish for letting him pass it on.

  • STORY FIVE •

  Meera Salamah

  “My fight with PH has been long and hard, just like the fight of trees against the forces of deforestation. Trees, I endure, and so shall you.”

  —Meera Salamah

  1

  WAVES ROLLING IN from the deepest part of the Mediterranean swelled and crashed in the distance before meeting the shore with gentle, peaceful ease. With arms stretched like wings, Meera twirled in dizzying circles through the clear, emerald green water of Lebanon’s Golden Beach, Shat Dahabee, and fell into its warm embrace.

  A slight breeze carried the scent of the country’s most authentic dishes—fresh fish caught from the sea, hummus dip, baba ghanoush—from bamboo-roofed cafes lining the historic peninsula surrounding them. A vibrant, folksy mix of traditional Lebanese and Egyptian music flowed from those cafes, creating a cultural, celebratory vibe for beachgoers, who played soccer and made drip castles in the sand.

  Meera laughed and splashed then soared from the sea as her grandfather scooped her into his arms and hurried toward the beach. She knew just what that meant.

  “Where are they?” she asked excitedly, leaning over his shoulder to get a closer look. “I don’t see them, Jiddu!”

  Ankle-deep, he glided carefully, patiently, through the calm waters.

  “There they are,” said her grandfather, “Jiddu,” as Meera called him. “See the jellyfish?”

  Meera’s long, black hair danced in the salty breeze, covering her face. She quickly swiped it away from her eyes and leaned in for a closer look.

  Hundreds of these tiny, fascinating creatures bobbed gracefully below.

  “Andeel,” he said in his native tongue, and then translated. “Jellyfish. Can you say Andeel, Namoora?”

  He and the rest of the family had called Meera “Namoora”—the name of a sweet, Lebanese dessert—from the time she was born.

  “Andeel,” she said proudly, excited to add another Arabic word to her four-year-old vocabulary.

  “Remember the warm, salty air in your face,” Alex whispered into Meera’s ear. “The hot sand in your toes. The sound of the waves. You are playing at the beach with Jiddu.”

  Eyes closed, Meera’s father blocked out the beeps, warmed his body in the cold room with thoughts of the ocean’s tepid air, breathed in memories of the water’s salty scent. His mind took him to Shat Dahabee, and he wanted his eleven-year-old daughter there with him.

  “Fill your lungs with the warm air,” he said, begging.

  Demanding.

  “Breathe it in, Meera. Just breathe,” he whispered.

  Her body was giving up, but on some level, she heard the pleas of her father.

  Alex found relief every time the numbers on the machine keeping Meera alive would jump as her oxygen level increased, indicating another breath taken. He and his wife, Nita, remained at Meera’s side, night and day, giving her orders. When her chest remained still and the numbers dropped and the beeps persisted, Alex took over for the machine.

  “Breathe.”

  She listened and her body responded, fighting for life.

  Dr. Robyn Barst, a Pulmonary Hypertension (PH) expert at New York-Presbyterian Morgan Stanley Children’s Hospital, who had been working with Meera’s doctors from the beginning, knew there were risks of the Extracorporeal Membrane Oxygenation (ECMO)—heart and lung—machine keeping Meera alive for too long. Her body would eventually grow weak, letting the machine take over its organs.

  “We need to take her off the machine and get her to New York City,” Dr. Barst said.

  The first time Nita, Alex, Meera, and her younger brother, Zane, had traveled from their Dallas, Texas, home to New York was in 2004, three years before, when Meera was eight years old and first diagnosed with PH.

  “Don’t worry, we’re going to beat this,” Dr. Barst had said.

  It was time to find out if they would.

  2

  C’mon, you can do it, Nita thought to herself one morning as she watched her eight-year-old daughter on the soccer field, hunched with hands on her knees, head pointed toward the ground. The other girls on her team sprinted down the field as Meera jogged to the sideline for a puff of her inhaler.

  “You okay, sweetie?” Nita asked.

  “Yeah, I’m okay,” Meera said, panting.

  She caught her breath, inhaled once more, and let it out as she ran to join the game. She trudged up and down the field, from goal to goal, on the defense for her team, the Ladybugs.

  Icy winds on that late March morning grabbed at her hair, still damp from an early-morning swim lesson, and pulled at her body as she ran against it. Determined, Meera played her heart out, maneuvering the ball with ease, running alongside her teammates, until her run became a trot, and then a gradual walk.

  Breathing the chilly air, running through its frigid grip, she came down with a severe cold a few days later. An X-ray to determine whether or not she had developed pneumonia revealed that her heart was enlarged and she was sent to a cardiologist. After hours of testing and numerous whispered conversations between doctors, they asked Meera and Zane to play in the children’s waiting area while they spoke to Alex and Nita.

  “We’ve determined that Meera has a rare condition called Pulmonary Hypertension,” one doctor said with a calm voice, but there was alarm in his eyes.

  Nita spent that night in front of her computer, the light of the screen illuminating the tears on her face as she scrolled and read site after site.

  “No known cure.”

  “Serious illness.”

  “Progressive heart failure leading to death.”

  One step at a time, she thought, wiping her eyes. We will get through this.

  The first step was telling Meera the doctor’s orders—no more physical activity, no more soccer.

  “No more soccer?” she asked in alarm. Her eight-year-old life revolved around the sport. “Why not?”

  Without a full understanding of the reasons she could no longer play, Meera spent her recesses at school staring longingly at the other second graders playing tag and soccer as she and her friends circled the campus, talking and sharing secrets.

  One afternoon, she picked a handful of wildflowers lining the fence surrounding the playground and carefully bundled them into a bouquet.

  “Treehugger!” her friends teased, and Meera smiled. She could no longer experience the outdoors the same way she once had, kicking soccer balls, running in the fresh air, but she could continue enjoying and appreciating it in the way she had learned to do after joining the school’s environmental club earlier in the year.

  “All right, we’re going to build butterfly houses today,” said Mr. VanSligtenhorst later that afternoon during an environmental club meeting. Meera had joined after an environmentalist visited her elementary school and fascinated her with clothing made from water bottles and other recycled materials.

  Through the club, Meera enjoyed planting flowers, learning about the rain forest, making paper, and keeping the environment clean by recycling. She painted her wooden butterfly house lime green and lavender and added bright polka dots and pastel flowers.

  Once they were dry, Mr. VanSligtenhorst hung all the colorful houses from an oak tree near the playground, and Meera stood beneath them, watching in awe as butterflies fluttered through the windows and out the doors before landing gracefully on the rooftops to rest their beautiful wings. She watched carefully, intrigued by the way they seemed to study their surroundings thoughtfully, deciding what their next destination would be.

  When Meera got home, she just wanted to be outdoors, in nature, with the sun and the wind. She wrapped her arms around the forty-foot-tall silver ma
ple in her front yard that she loved for its shade and beauty and whispered, “I love you.” Sitting on its bumpy roots, she waited until the late afternoon sun took a dip beneath the horizon before pulling out her finger paints. Resting on its trunk, she began to paint the fire reds and blazing oranges of the setting sun, and it was then that she transitioned from athlete to artist.

  Pulling out another sheet of paper, Meera created a colorful trail of hearts all over the page. She wrote inside each heart the timeline of her life, from birth to “Boggess Elementary, PH, Murphy Middle School, high school …”

  Then she predicted her future—“college, medical school, PH doctor”—before writing on the back, “My dream is to become a PH specialist and help the young and old who have PH like me. I would like to help them follow their dreams.”

  During her battle with Pulmonary Hypertension (PH), Meera created this picture—a prediction of her future, from birth to PH doctor.

  She had practiced medicine on her stuffed animals from the time she was just four years old, checking their imaginary heartbeats with her plastic stethoscope, their pretend pulses with a steady hand. She studied the intricacies of roly-polies and Daddy Long-legs as she got older, and for her tenth birthday, Meera’s friends bought her a book called The Human Body so she could learn the inner workings of the body’s systems. But before she could become a PH doctor, she needed to beat her illness.

  3

  Three years after Meera’s diagnosis, after her days of playing soccer and running with a child’s freedom in the sun were seemingly over, Nita and Alex wanted to lift her spirits, and their own, as she lay still, unknowing, in her hospital room. They hung pictures, reminders of their daughter’s love for the outdoors, the places they knew she would rather be.

  Though Meera couldn’t see them, these images captured moments of ocean waves breaking, waterfalls splashing, and birds flying freely, and they brought comfort and peace to their lives. The photos brought with them the warmth of the sun, the serenity of the sea, the calm of the open air—the very elements that had made Meera fall in love with the outdoors at a very young age.

  Her favorite place in the world was Maxwell Creek, a gentle flowing stream behind her backyard that crept through the nooks of the earth, twisting through giant maples and oaks, jutting lightly against rocks and branches that got in its way. When Meera wasn’t busy in her room with doing homework, practicing the violin, reading, or painting, she spent hours exploring the banks of the creek, learning its sounds, discovering its creatures, releasing her thoughts to the wind. It was there that Meera became at peace with her illness.

  Alex glanced between the photographs hanging on the stark walls of her hospital room as he continued to whisper in his daughter’s ear, “Breathe.”

  His strength, his determination, moved through her.

  It guided her, as it always had. She took shallow breaths with every command, her father’s words keeping her alive when the machine no longer could.

  After five days on ECMO, Meera’s doctors decided to test the strength of her organs by temporarily unhooking her. Because transporting her on the machine to Dr. Barst’s hospital in New York was not an option, they needed to see if her body could stand to make the journey on its own. Alex and Nita watched nervously through the glass window of Meera’s room, looking beyond their own reflections, as doctors shut the machine down.

  For three days they remained watchful. Meera was on dialysis and her lungs were filling with blood, but, with time, her numbers stabilized and doctors slowly began to wean her from sedation. Alex and Nita sat on either side of her hospital bed, their hands in hers, waiting, until the moment her eyes began to flutter open.

  The innocence in them when they finally opened took Nita and Alex back to the day she was born eleven years before. The first time Nita held Meera in her arms, her wide eyes, an intense sea blue at the time, explored her parents’ faces, searching for answers, waiting for guidance. Overwhelmed with joy and frightened by how much he could love someone so instantly, so deeply, Alex didn’t sleep that night—Meera’s big, happy, blue eyes pierced the darkness of his mind every time he closed his.

  Meera’s eyes searched now, as they had eleven years ago, between her parents.

  “Hi, baby,” Nita said. “You’re okay. Everything’s okay.”

  She squeezed Meera’s hands and kissed her forehead as Alex said, “We love you so much.”

  He struggled with everything inside of him to keep his tears from falling and looked at her with strong, loving eyes as he caressed her face. Through every moment of weakness, every emotional collapse, he had stayed strong in the presence of his daughter. She needed that from him.

  It had been five weeks since the start of the nightmare they were living, when Meera’s period was heavy and painful and lasted longer than a month. When she started vomiting continuously, their local hospital had sent her to Children’s Medical Center of Dallas, where she received two blood transfusions for all she had lost.

  After a week in the hospital, Nita, who had spent every night curled up on the small couch next to Meera’s bed, woke to a panicked voice at 2:00 a.m.

  “Mama!”

  “I’m right here, sweetie,” Nita said, jumping to her side.

  “I need to go to the bathroom.”

  Nita slowly helped her daughter from the bed and guided her gently to the restroom. With arms around one another, Nita was careful not to trip over Meera’s gown or the IVs hanging from her tree.

  Meera suddenly began to drag her feet, her arms loosening and crawling slowly down Nita’s shoulders, falling away from her body. Limp, she slithered to the ground against the strength of her mother, and Nita hovered above, frantic. She quickly pressed the nurse’s button in the restroom and screamed her daughter’s name, over and over, before turning to God.

  “Bismillahir Rahmanir Raheem!” she prayed loudly.

  “In the name of God, the Beneficent, the Merciful,” Nita chanted, repeating this Muslim prayer.

  “Bismillahir Rahmanir Raheem!” she continued as two nurses lifted Meera from the bathroom floor and placed her on the bed. They began CPR and chest compressions while Nita’s shaking fingers clumsily dialed her husband’s cell phone.

  “Meera’s not breathing! They’re doing CPR! She’s in cardiac arrest!”

  The words pouring from her mouth, the voice repeating them, didn’t sound like her own. She felt as though she were watching herself from a distance, from another place, as she paced the room, panicked.

  Alex dropped off Zane with his in-laws on the way to the hospital. He kept the tone of his voice calm and his face hopeful for the sake of his seven-year-old son. Zane did not need to know that his sister was dying.

  Hands clutched around the steering wheel, Alex disregarded speed limit signs and tore through the streets. He zipped past cars on the dark freeway, tears blurring the headlights and white lines, the words in his head blocking out the sound of traffic.

  This can’t be it, he reasoned with himself. They will bring her back. My little girl is not going anywhere.

  He needed this to be true.

  Alex quickly parked his car and ran as fast as he could to Meera’s room, where nurses still hovered over her body, pounding their fists into her chest.

  It had been forty-five minutes.

  They’re going to hurt her! he screamed in his mind, tears flooding from his eyes, hands desperately pulling at his reddened face, his hair, as he watched his daughter’s lifeless body jolt with every attempt to start her heart. He was losing it. The pain was unbearable. He stepped out into the hallway, his sobs echoing outside of Meera’s room, and Nita left her daughter’s side to join him, to hold him.

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

  Every ounce of her knew that Meera wasn’t going anywhere. She knew the doctors who said Meera would have brain damage if she survived at all were wrong. As a mother, she could not lose her daughter, and God knew it. He would not take her from
them.

  “Bismillahir Rahmanir Raheem,” she repeated, and Alex looked down, his tears dripping to the floor, before he closed his eyes and became lost in his wife’s prayer.

  4

  “Her heart is beating on its own,” said a fellow doctor an hour later. That’s all Nita and Alex wanted to hear, but they knew there was more. “We’ve got her stabilized, but her heart is beating only because of the level of epinephrine we’ve got her on.”

  The doctor, whom they had never met before now, delivered the rest of the difficult news with sincere compassion and practiced calm.

  “When we stop the medicine, her heart will probably stop, and if not, her brain will most likely be damaged.”

  When a doctor standing by his side added, “You should start calling your family and friends—there is a good chance she is not going to make it,” Nita turned her back and walked away. She had no tolerance for negativity, no matter how much truth was in it. They had come this far, and ending the journey without Meera was not an option.

  When Nita and Alex returned to Meera’s side, her eyes remained closed, her life dependent on a machine.

  “I hope you can hear me,” Alex whispered into her ear. “If you can see the angels, they’re there to help.”