Once Upon a Wish (11 page)

Every morning, Sharon dressed her in shirts from her closet at home and painted her nails to match, as Katelyn would have done. Red, blue, orange, green, purple: the colors changed daily, everything coordinated. From the time Katelyn could dress herself as a little girl, she had put together outfits with every article—clothes, purses, shoes, accessories—matching, every detail a well thought out artistic plan. She wore gloves and hats to school, paid no attention to trends or labels, and often left the house dressed like she was going to church, strutting like a star.

Under Katelyn’s direction, guests had come to her sixth birthday tea party wearing fancy dresses, gloves, hats, and shoes. Sharon had always respected her daughter’s style, admired her flare, and honored it through sickness—just in case it somehow connected Katelyn with her old self, her well self; just in case part of her was still there.

   7   

After six months in the hospital—Katelyn in a coma for five and a half of them—every doctor had given up hope for her survival. They were waiting for her to die.

But Ray and Sharon were waiting for her to wake up. When doctors said there was nothing left to do but keep her alive, maintain her condition, Ray and Sharon had to make the toughest decision of their lives.

“We’ll take her home,” Sharon said after discussing their situation with Ray and Crystal.

Crystal confirmed Sharon’s instinct, saying, “Let’s bring her home and see what God can do.”

With Katelyn hooked to an IV tree of medicine, breathing and eating from machines, battling cancer and a rare brain infection, Sharon knew she might be getting in over her head, but she believed she could do it. Ray went to work, Crystal continued tenth grade, and Sharon became a full-time nurse, administering thirty-two different drugs at precise times day and night.

The hospital set her up with monitors and a bed at home, and after a day and a half of collaboration among doctors, nurses, and pharmacists, Sharon had a plan—very specific guidelines of times and dosages. She created a spreadsheet and determined the hours every day that she could sleep, the only hours not filled with administering drugs—between 2:00 a.m. and 6:00 a.m.

They brought Katelyn home on Christmas Eve. It was the first time Sharon saw the home Ray had purchased while she and Katelyn were in the hospital. When Katelyn’s doctors said the small, two-story condo they were renting was not adequate for Katelyn’s condition, Ray searched for a house, bought one, moved all of their stuff with the help of Sharon’s mom, and placed a Christmas tree with twinkling lights in the front room to welcome them home with holiday cheer.

Sharon made a traditional Christmas meal that year, wrapped presents, and the family opened them together as they had every year since the girls were born. They said a prayer that evening, as they would on every holiday, that Katelyn would make it to the next. Celebrating Valentine’s Day as a family was the plan, the focus.

On Valentine’s Day, Ray brought chocolates home to his daughters, and as he, Crystal, and Sharon indulged, Sharon teased, “C’mon girl, wake up so you can eat some.”

They treated Katelyn the same as they always had—took her to see movies, ice shows, shopping, restaurants, baseball games. People stared, kids asked questions, but Sharon and Ray were determined to live life, to give Katelyn a life, as long as she was breathing. Their outings—as difficult as they were to transport Katelyn, her meds, her pole, her machines—became their sanity.

Months passed and they dressed Katelyn in green on St. Patrick’s Day, dyed eggs and made cookies on Easter, took her to see fireworks on the Fourth of July, and shopped for Crystal’s prom dress the following April.

“Do you like this one?” Crystal asked, twirling in the dressing room.

Katelyn, big, green eyes closed peacefully, pretty face resting against the side of her wheelchair, machines and IVs at her side, looked almost thoughtful as Crystal stepped out of her dressing room and modeled the floor-length, black and blue, iridescent gown.

“See, she likes this one, too,” Crystal said, and the decision was made.

They went to church every Sunday and on some Wednesdays. After one Wednesday night service, Sharon and Ray took Katelyn to a Wendy’s restaurant as they often did. When they sat down, Ray noticed a woman staring at them from across the dining room, and he wondered if she was someone they knew. With the mystery of a stranger and the eyes of a loving friend, the woman finally got up, walked across the dining area, bent down, and cupped her hands around Sharon’s, placing a napkin in her palm. She walked away as quietly as she had come, and Sharon looked at her husband.

“That was kind of strange,” she said.

Sharon shrugged and opened the napkin, her heart folding with every written word.

Don’t worry, He is in control
, it said.

Every moment of question or doubt, every emotional dip on this roller coaster, God sent Sharon a sign to stay strong, stay focused, and pray for Katelyn to open her eyes—a clear message to Sharon and Ray that someday she would.

As the woman walked through the swinging door and into the night, Sharon reminded herself that they just had to keep doing what they were doing—keep praying through every twelve-hour storm, monitoring her around the clock, administering every med, checking every vital sign. No amount of tears could wash away their reality, and no amount of worry would make their situation better or worse. They just needed to have faith and keep living—and that meant exploring the world beyond the walls of their home, beyond the walls of the hospital, where they still went every single day.

   8   

A week after Katelyn fell into the coma, her body had listened to her brain and started curling inward, inch by inch, like that of a baby. Her muscles weakened and gave up, pulling in, shutting down. Intense physical therapy slowly tugged back, one limb at a time, stretching and strengthening with boots and braces and creative therapy techniques.

A month after bringing her home, when Sharon called Katelyn’s oncologist, Dr. Jeff Rubintz, for prescription refills, he asked how Katelyn was doing.

“She’s still storming every day,” Sharon said, “but she’s still here.”

Amazed to hear those words, shocked that Katelyn was still alive, Dr. Rubintz said, “Let’s bring her in and see how she’s doing.”

Having never seen anyone in Katelyn’s condition live longer than forty-eight hours, Dr. Rubintz was still unsure whether or not she would pull through, but just in case, he recommended that she continue physical therapy.

“If she does wake up, we want to make sure she can walk,” he said, and though the doctor still looked uncertain, still had doubts, Sharon found hope in the fact that even
he
was talking about the possibility of Katelyn’s waking up. Never imagining she would find comfort from the hospital, Sharon was glad to have somewhere to go every day, a place where a team of people, of doctors and nurses, were rooting for them, if quietly.

In addition to outings that allowed Sharon to feel somewhat “normal,” she took Katelyn to physical therapy at St. Jude hospital every day for two hours. With the help of tools and therapists, Katelyn’s body would uncurl during the day, and every night, Ray and Sharon would watch it fold back into itself.

A few months after bringing Katelyn home, the weather warmed and Sharon decided, after watching her daughter’s body resort to the fetal position every night, to try something that had always worked to heal Katelyn.

Water.

Crystal’s friend from church, Jonathan, had a pool in his backyard, and his family opened it up to Ray, Sharon, and Katelyn every day when Ray got off work. They spent hours transporting Katelyn, her wheelchair, and all of her IVs to Jonathan’s house to dip her in the water, inch by inch, careful not to let a drop into her tracheal tube.

Holding her from behind, swaying her gently through the water, Sharon and Ray watched as Katelyn’s weightless body immediately unfolded, succumbed to the water’s peace. Curled, white-knuckled fists loosened, feet, legs, and arms relaxed, and within moments, her entire body, long and straight, moved fluidly with the water.

“What are you guys doing to get her so relaxed?” asked Katelyn’s physical therapist, Swathi Salin, a week after they started putting Katelyn into the water.

Sharon smiled. She knew how well Swathi and Katelyn’s doctors would receive the news that they were placing Katelyn, comatose with a tracheal tube, in water.

“Do you really want to know?” she asked.

Swathi, who had been working with Katelyn for more than a year, studied Sharon’s face, lowered her brows with suspicion.

“I’m not sure …” she said slowly.

“A friend of ours has a pool …” Sharon started, and Swathi covered her ears.

“Don’t tell me,” Swathi said, laughing. “I don’t want to know. Just keep doing whatever you’re doing because it’s working. Just don’t tell me about it.”

Day after day, week after week, month after month, Sharon and Ray continued what they were doing—administering meds around the clock, daily physical therapy, monitoring storms, placing Katelyn in the pool, praying hard, and waiting for a miracle.

One morning, after a year of watching her daughter sleep, never knowing if she would wake up, focusing on the plan, staying strong for herself and her family, Sharon stepped into the shower and lost it. The water and her tears poured down her face, her sobs filling the bathroom, echoing against the tile. Ray was working, Crystal was at school, and her cries, her pleas, filled the quiet house.