Once Upon a Wish (26 page)

Determined to stay as cool as possible, to remain as accepted as his disease would allow, Garrett tried in every way he could, with everything inside of him, to look “normal,” to keep his body from giving him away, from taking away his image, from stealing his high school years.

Leaving his wheelchair, his prison, in class on days his body felt strong, Garrett would walk backwards down the halls, hands on the walls for support, facing his friends, talking and laughing as they made their way to class. He would fight it in class, fight it at home, fight, fight, fight.

For Spring break that year, Mike and Linda decided to give their son a break from fighting with a trip to Belize—a place they had never been before—maintaining their philosophy, “Never visit the same place twice.” He could float in the Caribbean Sea and lie on the white, sandy beach. But, as always, they found something more. Despite Garrett’s limitations, they found an adventure.

Maneuvering the wheelchair in the sand was nearly impossible, so one afternoon they left their small cabin on the beach and took a boat to a nearby deserted island, Silk Caye, where Garrett leaped from his wheelchair, crawled through the sand to the water, and strapped on a pair of goggles and fins. As Linda walked to the water’s edge, she glanced at the wheelchair, abandoned in the sand like a sunken ship, tilted and no longer needed, at least for the moment.

In her optimistic mind, where reality easily became make-believe, that wheelchair would stay there forever. She would pretend it away, smile the surgery from existence, laugh Dystonia from their lives. Just like the wheelchair, they would abandon it all.

She and Mike swam hand in hand with Garrett, away from shore and around the island, away from it all. They pulled Garrett through the water, admiring bright fish and colorful coral below, the sun’s heat on their backs. This was their reality for now, but if all went well, everything would change. The surgery could fix everything.

And while, in their minds, it had to, they knew there was a chance it could fix nothing. If it didn’t work, if Dystonia won again, this could be one of Garrett’s last adventures, one of their last adventures as a family, their “last hoorah.” They were determined to make the best of it. They snorkeled and spent hours at the ice cream shop and beach bars, befriending tourists and locals to the area.

When they left paradise and returned home, reality was waiting to greet them. Surgery was one week away. Linda cried to her friends, and the days leading to surgery, she and Mike sent Garrett’s mind as far away from reality as they could with endless games of Rock Band on the Xbox with his friends, nights out to dinner, and sightseeing in Boston where the surgery would take place.

On the day of surgery, dressed in blue smocks, fear living inside, Mike and Linda held Garrett’s hands as doctors placed a metal “halo” around his head to keep it still, to locate exact areas of his brain. He was fifteen, but the way his blue eyes searched his mom’s face, the reassurance for which they begged, reminded Linda that he was still her little boy. She plastered a smile on her face, willing her eyes to communicate,
You’re going to be just fine.

And Mike believed it. Garrett, listening to his iPod, had sung “Beautiful Day” by U2 after being admitted to the hospital.

The words of the song, of falling skies and good days slipping away, circled Mike’s head, and he listened.

The sky was not falling today. This was a good day, a beautiful day—a day that would give Garrett back his life.

“Everything’s going to be okay,” Linda said, just in case her expression, the message in her eyes, was not clear enough, then she squeezed Garrett’s hand and left the room.

“We’ll see you later,” Mike said, smiling. “Good luck.”

   9   

During the five-hour surgery, Mike and Linda roamed halls, paced the floor. In a deli across campus, Mike calmed his nerves with a big Italian dish while Linda drank hot chocolate and chicken broth, the only two things she knew her nerves would allow her to keep down.

They spent most of their time in Garrett’s empty hospital room, looking out the window at the highway packed with cars coming and going between New Hampshire and Boston.

Everything will be fine
, Linda told herself.
They will take good care of him. He’ll be okay.
A pager in her hand buzzed every so often with updates, confirming her thoughts.

“We are starting surgery now,” a nurse working with Dr. Sharma texted after they took a CAT scan of Garrett’s brain and merged it with results from a previous MRI, creating a perfect map of the area where they would place the leads.

They shaved and numbed his head before starting to drill. Garrett didn’t feel a thing. For perfect placement, doctors asked him questions, challenging his brain, making him move his arms and legs, firing neurons. The sound of it, the noise of his brainwaves, rushed through his ears, a soft static swooshing loudly with each command, every movement.

“One side is done!” the pager announced.

I knew it
, Linda thought.
I knew everything would be okay.

Fake it ‘til you make it.

A few hours later, another message.

“The other side is done—Garrett did great!”

She could finally breathe.

“You can see Garrett in the recovery room,” the pager said, and Mike and Linda made their way through the waiting area, a small, warmly lit room with a beautiful undersea mural painted on its wall. Linda thought of their trip to Belize just a week before, filled with ocean adventures, possibly their last journey, their last family trip before the unknown. Now here they were, the words
Garrett did great
on the pager in Linda’s hand. As she glanced at the mural, the ocean, one last time, she smiled at the irony.

“It wasn’t as bad as I thought it would be,” Garrett said, smiling at his parents.

Two days later, brain surgeon Dr. Emad Eskandar surgically placed a pacemaker in Garrett’s chest, wire connecting to the leads in his brain, and recovery was more miserable than he ever could have imagined. He slept through as much of it as he could, waking up to throw up, trying to rest during the most intense headaches he had ever felt. But then it was over, and once again, it was time to wait.

They headed home, where Garrett rested and healed, filled his time with relaxation and schoolwork, and a month later, it was time to see if the surgery worked. The incision had healed, the swelling had subsided, and Garrett went with his parents to see Dr. Sharma and nurse Lisa Paul, who would turn on the device that would determine his future.

They wanted the reaction of a light bulb after a flipped switch—instant. But that’s not how this worked, and they knew it. It could
take up to three months for Dystonia to release its hold on Garrett’s brain, which it had been controlling for the past seven years. It was not going to let go easily.

Garrett returned to the ninth grade, in his wheelchair, and waited. He tried almost daily to test his brain, to challenge his body, and to walk. But just as before, Dystonia won every time.

Until one day toward the end of the school year, a day no different from any other, a day that became the next chapter in his life.

It was the end of Garrett’s geography class, his last for the day, and when the bell freed the students, they gathered their things and made small talk as they headed toward the door.

Garrett stood, held onto the back of his wheelchair and began to push. There was nothing special about that moment, nothing in his body that shouted “Dystonia will not win this time!” He decided that, if letting go caused his leg to jut or his back to spasm, he would just grab the handles and nothing would change. No one would notice. But the moment his hands let go, his legs moved forward, around the side of the wheelchair, and guided him around the room, all eyes on him.

“Hey, I thought you couldn’t walk!” hollered a kid from across the room.

Garrett smiled, beamed, then shouted, “Neither did I!”

He couldn’t wait to show his parents. Linda was outside waiting, as she was every afternoon. In his wheelchair, Garrett pushed through the door on the side of the school building and rolled toward his mom, who got out of the car. He stopped the wheelchair and said, “Hey Mom, watch this!”

He stood up and walked around the car, not a hand on it for support, not a falter in his step. He wasn’t jolting or twisting, and nothing was jutting—his body seemed out of Dystonia’s reach, at least for the moment. With a big smile on her face, disbelief in her
eyes, Linda couldn’t help but wonder what the next moment would hold. She wrapped Garrett in her arms, expecting to feel a spasm in his back, an involuntary shake or heartbreaking twitch.

Nothing.

They drove home, Garrett planning how he would tell his father, Linda hoping with all her heart that they had just entered the imaginary, perfectly pretend world she had been creating in her mind for so many years.

They pulled into the driveway, and before she could put the car into park, Garrett was out and walking quickly, normally, toward the door leading into the kitchen of their home. He couldn’t get to his dad fast enough. Linda watched as he walked through the door, and Mike, who was heading toward the kitchen from the other side of the house, stopped the moment he saw Garrett.

“What the hell are you doin’?” he asked, a smile crawling across his face.

“I’m walkin’!” Garrett shouted, arms thrown out at his side as if to say “ta-da!”

Pure happiness turned Mike’s proud smile into a relief-filled grin as he reached out to shake his son’s hand. Garrett had been running or crawling or confined to his wheelchair for so many years that Mike had forgotten what it was like to look at him eye to eye. He didn’t offer a hug for his little boy; he offered a handshake for the man standing before him, the man who had handled his situation with such maturity, such dignity, such patience, and optimism. As Garrett squeezed back, he realized that this was not a congratulatory handshake, this was a welcome handshake—
welcome to your new life.

   10   

Sand-colored dust circled in clouds through hot air as tires of a rustic, flat-bed truck tore through the dry, Cambodian earth. Garrett watched as it made its approach, and through those circles, swirling and climbing, disappearing toward blue sky, he could see the faces of those that reflected his past—the faces of ten people living the way he had once lived; the faces of people whose lives he was about to change.