Once Upon a Wish (29 page)

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.

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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 violently 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.

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