Taylor's Gift (33 page)

The Gift of a Future

A
SHLEY
Z
OLLER
S
OUTH
D
AKOTA

“Ashley, time to get up!” Dueene said.

Ashley opened the door to her room. “Good morning, Mom.”

Ashley was already dressed and ready to go; Dueene smiled at her daughter. For years, Ashley had woken up every morning ready for a fight. If it wasn't about her clothes, it was about her breakfast—usually she argued with Dueene about both. Some mornings they would fight over Ashley taking her medicine, and other days Dueene would have to force it down her. But ever since her corneal transplant eighteen months earlier, Ashley had changed. In fact, she'd become a different person.

Dueene poured herself another cup of coffee and watched Ashley hungrily wolf down her breakfast. Most mothers of twenty-year-old daughters didn't marvel at their daughters' eating habits, but Dueene did. After nearly two decades of trying to get Ashley to eat, she was finally doing it. Ashley seemed to have more of an
appetite following the corneal transplant. In fact, over the past year she'd put on ten pounds and was continuing to gain weight. This was a huge accomplishment. Dueene remembered bringing her three-pound baby home from the hospital and doing everything she could to coax her to eat. Years later, she still weighed only twenty-five pounds. By the time Ashley was in high school, she seemed to have stagnated at eighty-four pounds.

But since the surgery, Ashley had blossomed to more than ninety pounds—a huge milestone. She was healthier than she'd ever been.

Dueene worked seventy-five to eighty hours a week in the restaurant. When it was slow, she had time to think. In December 2011, she spent a lot of that time thinking about Ashley's future. In a few days, Ashley would turn twenty-one. That milestone birthday also meant that, as a special needs student, this would be Ashley's last year in public school.
What will she do next year?

As Dueene stacked cups and folded pizza boxes, she knew they needed a plan for Ashley, but she wasn't sure what. On one hand, Dueene welcomed a break from parenting. Ashley had required her full-time attention, twenty-four hours a day, seven days a week, for more than twenty years. Dueene had given up a lot of her own hopes and dreams to be available for Ashley's special needs. If Ashley were able to live in some kind of group home, Dueene would experience freedom she hadn't had since Ashley was born. But Dueene also knew if Ashley were living anywhere else, she would miss her terribly.

One day, Dueene was preoccupied with thoughts of Ashley's future. “What's going on?” one of her longtime employees asked. As Dueene wiped down counters, she expressed her concerns. “I want Ashley to be independent and to have her own life. Everyone deserves to have their own life. But I'm not sure how that's going to happen yet.”

“But you're doing everything you can,” the employee said.

She was right. Dueene was doing whatever she could to help Ashley learn to live independently. In addition, several times a week a companion came in to teach Ashley specific skills. Together, they would go to the mall, the grocery store, or volunteer in the community. At home, the companion helped Ashley do her own laundry and learn basic household skills—such as how to clean the toilet.

“I've seen a lot of progress in her skills,” the employee was quick to add.

Dueene knew she was right. “Things are getting better. I feel as if I haven't taken a deep breath in twenty years, but I'm going to start taking a lot of deep breaths soon.”

Ashley entered the restaurant immediately after school and plopped down on a bench in one of the Aztec-themed booths.

“Do you want something to drink?” Dueene asked.

“Sure.”

As Dueene disappeared behind the counter and grabbed a glass, she asked Ashley about her day.

“At school, I had to wipe off all the tables. I had to work with a bully. His name is Justin. He pushes me.”

“Did you push him back?”

“No.”

“Good for you, Ashley.” Dueene wanted to reinforce her daughter's good behavior.

In the past, when Ashley was in one of those kinds of moods, she would have decked him. One of the characteristics of Williams syndrome children is that they're fearless in the face of danger. Although Ashley was smaller, she'd take on anyone, no matter what size they were. At that time, Dueene would have been scared for the bully—Ashley's anger was that explosive. But since the transplant, her outbursts had disappeared.

“What did the teacher do?” Dueene asked, setting a drink in front of her daughter.

“He's not allowed to come near me anymore.”

Dueene ran her fingers through her daughter's straight hair. Ashley had begun straightening it because she thought boys liked it that way. Dueene smiled. She knew Ashley had recently started showing more grown-up preferences. For her upcoming birthday, she wanted clothes, but not the pink and purple girly kind she had in her childhood. Instead, she wanted rocker clothes from the Hard Rock Café. Ashley also had a boyfriend—a young man with special needs whom she'd met at Walmart. The two friends socialized occasionally with a group, or they talked and texted when Dueene allowed. It was obvious that Ashley had begun to pay attention to boys—and they were paying more attention to her.

Dueene's twenty-year-old daughter was beginning to act like a teenager.

While Ashley was doing her homework, Dueene got busy in the kitchen, prepping for the busy night ahead. When the dinner rush started to build, Dueene moved to the counter to take orders and did her best to keep customers moving through the counter line. She also tried to keep her eye on Ashley in the dining room. It was an old habit.

In the past, it seemed Ashley was always agitated and angry. If the restaurant was crowded and people got in her space, it would set her off and an outburst would follow. Dueene had trained herself to look for the initial signs of Ashley's outbursts, so she could intercede and prevent a full-blown scene from taking place in front of customers.

But with a steady stream of customers and an employee out sick, Dueene was so busy she didn't have time to keep a watchful eye on Ashley. It wasn't until the end of the night, after everyone had left, that Dueene realized the place had been full all night and Ashley had not only kept out of trouble but she'd helped out too.

“How did it go?” Dueene asked as Ashley carried dirty dishes to the kitchen.

“Good. I like meeting new people here,” Ashley said.

Dueene had to pause a second.
Who was this kid?
Ever since the transplant, Ashley seemed calmer. More at peace with herself. And though Dueene was always on the lookout, there hadn't been any outbursts. In fact, it had been quite the opposite—Ashley had actually been helping out at the restaurant.

Dueene's mind flipped through a few recent scenes. In June, when the Sturgis Motorcycle Rally was in town and the place was packed, Ashley had waited on several tables of bikers. And they'd left her tips. “They were cool,” Ashley had said.

More recently, a sweet older couple from Alaska had come in, and Ashley had become friendly with them. She had a knack for remembering names and faces, and Dueene knew that if the couple ever came back, Ashley would remember them. As she counted the receipts, Dueene realized her daughter was growing up. She was treating people more kindly, she'd stopped having outbursts, and she'd started helping around the restaurant. Ashley seemed more capable of taking care of herself than ever before.

Until the surgery, Dueene hadn't understood how painful Ashley's headaches were or how much they had impacted her behavior. Now that they were gone, Ashley was a different person. And Dueene was just beginning to see how much she had changed.

Right after Ashley's transplant, Dueene noticed physical changes in her daughter. Though she'd had trouble sleeping since she was a baby, following the surgery she began to sleep more. Her depth perception was also better. Before the surgery, Ashley had trouble staying on the sidewalk while walking; she rarely had that problem anymore. And going up and down stairs had also gotten easier.

Ashley reported other changes to Dueene. She could see faces better, and people no longer looked like ghosts. Her grades improved, and she began doing better in school because her reading had improved—she could finally see the text.

“And I can type faster,” Ashley told Dueene one day after school. “I can see the letters better on the computer.”

In the future, Ashley would still be in therapy for her other Williams syndrome–related issues, but now she had the vision and clear mind to be able to work hard on those things without eye pain and headaches distracting her. For a girl whose life had always been hard, the transplant helped make it a lot easier.

Dueene wanted to thank the Storches, but it took her nearly a year to finally contact them because she wasn't sure what to say. She knew her life had been tough raising Ashley, but Dueene had always adjusted. She couldn't imagine how Tara would ever adjust to losing Taylor.