Taylor's Gift (6 page)

He was sent to a hospital in Denver, where they tried drastic drug therapies to stop the kidney from failing, but it was too late.

An angry doctor confronted him. “You've lost the kidney. Do you have any idea how many people are waiting to get one of those? And you just threw it away! In fact,” she snapped, “your creatinine level is so high you should be comatose! You took the gift your mother gave you, and you ruined it. Start thinking about dialysis. You'll be lucky if you ever get a kidney again.”

He didn't need her admonitions. Though his mind was still foggy, Jonathan understood the gravity of what had happened. But her comments made him wonder: Should he just give up?

He'd already lost hope that he'd ever feel better. Now he was just tired of fighting.

As Father Seraphim got up to leave, Jonathan finally had the clarity he needed to make his decision. Dialysis or death. Jonathan looked them both square in the eye and made his choice.

He chose dialysis.

He believed what the priest had said. He
had
fought valiantly to get here, and he wasn't ready to give up yet. He also knew that going forward, his path wouldn't be easy.

For the next eight years, Jonathan underwent dialysis up to four hours a day, five days a week. He had to give up his job as a piano technician. He started working in Information Technology because he could work from home when he wasn't feeling well. Eventually, Jonathan got trained to give himself dialysis at home. It was more convenient and he felt more in control. But it still wasn't stress-free. He'd scream in pain from the leg cramps. Or a vein would explode, and he'd watch a lump as large as an orange immediately swell up under his skin. If he pulled the needle out and didn't get the gauze over his arm right away, he would spurt blood, sometimes all over the walls. There were simple frustrations too, like wanting to grab a snack, ride his bike, or travel—things he couldn't do while tied to the dialysis machine.

When his name was put back on the transplant list, Jonathan knew odds were against his finding a donor organ his body wouldn't reject. He needed the perfect kidney. Sitting in his chair, his arm hooked up to a machine that cleansed his blood, Jonathan promised himself, and God, that if he was ever given the gift of another kidney, he would treasure it.

A
SHLEY
Z
OLLER
S
OUTH
D
AKOTA

“Ashley, can you help with the dishes?” Dueene asked as her daughter walked from the dining room into the kitchen of JD's Pizza. It wasn't an unusual request; it was a family restaurant and everybody did what he or she could to help.

“No!” Seventeen-year-old Ashley's short, curt reply caught Dueene off guard.

Standing behind the counter, Dueene could see the dinner line was growing longer and the place was starting to fill up. She knew as soon as the pizzas were done some of the kitchen staff would have to leave their posts to make deliveries, and the restaurant would be even more shorthanded. Dueene needed help.

“Please, Ashley,” Dueene begged.

A customer drummed his fingers on the countertop.

“What can I get you?” Dueene asked him.

“No!” Ashley said again, and then for emphasis, “And you can't make me!”

Dueene could hear the agitation rising in Ashley's voice, and she knew what was coming next—Ashley was about to flip out.
Dueene didn't have time to argue, not with customers waiting. She handed a receipt to the man on the other side of the counter and tucked a strand of blonde hair behind her ear. “Your pizza will be ready in just a minute,” she promised.

Dueene was worn out.

She loved her daughter dearly and hated it when Ashley acted this way. It wasn't good for business, and it certainly wasn't good for their relationship. But Dueene also knew that Ashley was right. Though her teenager was quite capable of helping her with the dishes, if she was unwilling Dueene couldn't force her. Dueene knew from past experience that if Ashley wanted to scream and yell, there was nothing she could do to stop her.

“What can I get you?” Dueene asked the next customer.

Ashley was born frail, weighing just three pounds, fifteen ounces. For two weeks, Dueene wasn't allowed to take her beautiful baby home while she was cared for in the Neonatal Intensive Care Unit (NICU) of the Santa Barbara hospital. When she finally got Ashley home, she was so tiny that when Dueene laid a decorative pinecone next to her baby, Ashley was smaller than the pinecone. Dueene tried to coax her fragile baby girl to eat, but Ashley was difficult—she didn't want to eat.

But more was wrong than just Ashley's preemie weight. At two months old, after another stay in the hospital for pneumonia, Ashley started to cry. And she didn't stop crying for
years.

When Dueene told people that, she knew it sounded like an exaggeration, but it was the truth: all Ashley did was cry. She cried when Dueene held her and when she put her down. She cried when she was hungry and when she was fed. She cried when she was wet and when she was dry. The crying never stopped.

And when Ashley cried, it wasn't sniveling or whimpering; she was full-blown
screaming
at the top of her lungs. She cried every day and every night—Ashley didn't sleep. No one had seen anything
like it. The only relief Dueene got from what she affectionately called her “little crying machine” was the twenty-minute bursts of silence while Ashley was in the swing and it was moving. As soon as the swing stopped, the crying started again. The swing was a godsend; it was the only thing that satisfied Ashley. Dueene used it so often the metal actually bent from use.

Dueene knew something was terribly wrong. She took Ashley to the pediatrician, who recommended she see a specialist, who recommended more specialists. “It's like she's screaming bloody murder,” Dueene told each of them. The doctors had lots of recommendations: gas drops, stool softeners, different brands of formula, goat's milk, and starting her on rice cereal. But they didn't have a cure for whatever caused Ashley's discomfort.

After eight months of pointless visits with no end in sight, Dueene grew frustrated. The single mom worked full-time and she wasn't getting any help from Ashley's dad. It was too much for one person. Dueene decided to move back to Rapid City, South Dakota, where she had grown up, so she could be closer to family. Ashley cried the entire flight to Rapid City and continued to wail once she was there.

At age two, Ashley weighed less than twenty-five pounds and had very limited functioning. The doctor visits continued in Rapid City, where one doctor's visit led to a referral for three more. The diagnoses began to accumulate. Doctors' visits were followed by therapy visits. At three, Ashley finally learned to walk, but she didn't stop crying.

Ashley was four when a musculoskeletal specialist thought he heard a heart murmur. A team of specialists flew into Rapid City monthly, and it was recommended that Ashley see the cardiologist to have the murmur checked. Dueene set up yet another doctor's appointment, but she didn't have high expectations. However, this appointment would change their lives.

After taking one look at Ashley—her upturned nose, flattened nasal bridge, small chin, wide mouth with prominent lips, and the starburst pattern on her iris—the cardiologist said the words that unlocked the mystery that was Ashley. “She's got Williams syndrome.”

Williams syndrome is a genetic mutation of the seventh chromosome that happens in one out of every seventy-five hundred newborns. Approximately twenty-five genes (out of twenty-five thousand) are deleted. Williams syndrome patients all have a consistent set of identifying traits and are vaguely elfin in appearance. The cardiologist called them “pixie people” because of their diminutive size and telltale facial characteristics. Newborns are often colicky, perhaps due to their hyperacusis (sensitive hearing). Feeding problems, low birth weight, and slow weight gain plague them from birth.

As Dueene asked more questions, she began to see how Ashley's medical history lined up with the diagnosis; though it scared her, it also gave her hope. It wasn't all bad news. Williams syndrome kids have special needs, but they also have an intriguing set of personality traits. They are highly social with remarkable verbal abilities and often have an affinity for music.

The doctor spent two hours talking to Dueene. For the first time, Dueene understood her daughter. Armed with a diagnosis, Dueene was able to more knowledgeably navigate the medical system and choose appropriate therapies for Ashley. Within weeks, Ashley stopped crying.

It had only taken four years.

Over the years, Dueene watched her daughter become more independent and discover her own interests. Ashley was crazy about monster trucks and wedding cakes; she often obsessed about them. Dueene couldn't allow Ashley to go to the fairgrounds to watch the monster trucks perform because it irritated her asthma, but she helped her daughter get a ride in one driven by a friend. It was the best day of Ashley's life. After watching shows on TV about
decorative wedding cakes, Ashley decided that instead of a bride and groom on the top of her cake, she wanted his-and-her monster trucks. Her eyes lit up, her speech got faster, and she bounced in her seat as she talked about her passions.

Friendly and social, Ashley had so much about her to love, but by her teens a dark side showed up. Every morning started with a mother-daughter struggle. Ashley would get up wanting to fight. Dueene would try to get her to eat breakfast, and Ashley would respond, “I don't want to eat that. I don't like that.” Further coaxing only resulted in Ashley screaming, “You can't make me!”

Ashley then refused to take her medications. After much fighting and tears on both sides, Dueene would have to physically make her.

While Ashley was in school, Dueene found a few hours of peace working at the restaurant. Then Dueene would pick her up and the fighting would start all over again. Dueene hated it. It wasn't at all what she wanted, but she also knew that sometimes Ashley couldn't control herself.

The screaming and arguing went on for years. Doctors prescribed mood stabilizers and antidepressants. They didn't seem to help. Dueene knew Ashley was having headaches and those alone made her irritable, but the irritability grew into rage.

As things worsened, Ashley began hitting Dueene, and then Dueene's boyfriend, Jeff, the only male role model in her life. The physical violence got so out of control that there were days Dueene had to physically restrain Ashley. At times, she even thought about calling the police for her own safety.

Though her crying as an infant had been frustrating and exhausting, as a teen Ashley's anger was turning into something more dangerous. Dueene wasn't sure how it would end.

On a weekday in December, Dueene took eighteen-year-old Ashley to the eye doctor for a routine visit. “Have you been having headaches?” he asked.

Dueene listened as Ashley told him about the intense headaches she was experiencing almost constantly. Dueene was surprised. Though Ashley had mentioned the headaches, she hadn't complained. By this time Dueene was so used to Ashley's medical problems that she no longer got too worked up about anything. There was always something wrong with Ashley; she always had a pain somewhere. But as Dueene heard Ashley describe the severe pain knifing through the back of her eye, she thought to herself,
No wonder she's so mean.

The eye doctor recommended they see a corneal specialist, who showed Dueene the problem: Ashley's eye was coning, an inherited condition called keratoconus. “This is likely the cause of her headaches and eye pain,” he said. The doctor went on to explain that Ashley probably couldn't see well out of that eye.

While several things could be done for Ashley, her vision would continue to deteriorate. Eventually she would need a corneal transplant. “Most of my transplant patients say they wish they hadn't waited so long,” the doctor said.

Dueene was shocked that her daughter needed eye surgery, but she was hopeful that the corneal transplant would help Ashley to see and feel better. Since corneas were more readily available than other kinds of donor organs, the doctor decided to go ahead and schedule Ashley for the corneal transplant while they were there.

The date was set for March 22, 2010.