Abbie Waters: The Habit of Being 

by Charles McGuigan 04.2012

This cover was first published in April 2012 not long after Abbie’s death. My son attended school with Abbie—they were in the same grade, and I knew Abbie’s parents. Here are links to the two audio stories I produced about Abbie.

https://exchange.prx.org/pieces/178736-abbie-waters-the-habit-of-being-part-1

https://exchange.prx.org/pieces/179156-abbie-waters-habit-of-being-part-2

I first met Abbie Waters a little over two years ago when I was talking with David Hudson, principal of Holton Elementary School. We found ourselves in the art room and there were only two other people in there with us—Rolanda Scott, the art instructor; and Abbie Waters, a student who was about seven at the time.

I can tell you this much about Abbie based on that first meeting: she had no fear of the mic and her eyes were radiant blue and wide, and they could burn a whole right through you. She handled a paint brush with the deftness of a professional artist. At the moment we first met, she was painting ceramic leaves, with alternate brush strokes of bright green, then olive. Abbie wore a fine furze of hair on her head, as did her teacher, Rolanda Scott, and these two people had more in common with one another than their desire to make pretty things.

“Are you an artist?” I asked Abbie.

“Kind of,” she said. “But my friend Catherine she’s good at it cause she drawed a whole live turkey.” It was about a week before Thanksgiving.

“Do you have a special relationship with Miss Scott?” I said to Abbie.

“Yeah.”

“Why?”

“Well, we both have cancer.”

“We’ve been having a brief conversation because Abbie has eyebrows still,” said Rolanda. “And I’m having a test in the donut machine this afternoon and Abbie told me all about it.” She turned to Abbie and added.  “It’s not Krispy Kreme, is it?”

“No,” Abbie said. “But when I did it, I watched Hannah Montana: The Movie.” 

“A little while ago we were comparing ports,” said Rolanda, indicating the fleshy underside of her own forearm where there was a single bleb under the skin.

Mr. Hudson placed his palm on Abbie’s head and said: “My wonderful person is coming along really, really well.”

Late this past February, on a night that was bitterly cold, I met with Abbie’s parents, Mary Ann Waters and Jeff Bernas, in their snug living room on Hermitage Road. They remembered how it all started, how the three of them had just returned from a Disney cruise to the Bahamas, well-rested and ready to tackle the new school year.

It was the winding down time that evening and there was still a hint of sunlight left in the world.  

Mary Ann sat on the edge of the bed next to her daughter and tickled Abbie’s belly. The girl twisted and turned to evade the assaults, and laughed almost to tears.

Mary Ann’s hand crept back to her daughter’s tummy, again, but not to tickle her this time.

“I felt a little mass in her tummy that felt hard,” Mary Ann remembered.   “It seemed weird and I thought, ‘Well, maybe, I’m exaggerating .’ ”

But her mind wouldn’t let it go, so she went online, looking for clues. Virtually every website she went to recommended an immediate meeting with a pediatrician, so the next day after school Mary Ann took Abbie to see the doctor. 

“And they looked at it and said, ‘You’ve got to get pictures of this right way,’” said Mary Ann.  At VCU Hospitals, technicians took the pictures and radiologists examined the data.  “They said maybe it’s just a cyst, or maybe it’s nothing at all,” Mary Ann said.  Regardless what it was, the doctors recommended immediate surgery and a biopsy.  

A few hours can be a lifetime, and a few minutes an eternity. Time slowed almost to a halt when Jeff and Mary Ann got the results of Abbie’s biopsy. 

Abbie had stage IV rhabdomyosarcoma, a cancerous soft tissue tumor that frequently occurs in striated muscles, and though it’s comparatively rare—only about 350 case new are reported each year in this country—it is the most common soft tissue tumor found in children.

The tumor was large and wrapped around the tightly packed organs in Abbie’s small abdominal cavity. It was almost too much for Mary Ann and Jeff to take in. Something horrific had invaded the interior of their Snicker Doodle, their Sweet Pea, their little Abbie. The cancer had also spread to her lungs.  

But there was an upside to all of this. 

“The doctors said Abbie’s cure rate was still very promising,” said Mary Ann.

And the surgeon who would operate on her, Dr. Charles Bagwell, had good news to report. “The tumor wasn’t attached to any of her organs,” Mary Ann said. “It was just in the wall of the abdomen.”

The operation had been a success. What’s more, the spots in her lungs had disappeared.  

Abbie was winning this battle. There was follow up radiation and chemotherapy, and everything looked good. By late June the treatment was supposed to be over.  

“It was the day she was supposed to ring the bell and be at the end of her protocol,” Mary Ann said. “But they did a scan and they noticed a few little spots in her lungs and we were like, ‘Oh no, it’s really bad.’ So they went in and did a surgery on those and by the time they did that surgery they were gone. It showed nothing. We were super-excited.”

Shortly after the school year started, Abbie began acting in a way that was entirely out of character for this child who had the sunniest of dispositions even when life presented a storm front. Among other things, she complained about gym class.  

It turned out she had a collapsed lung, and had been walking around with it for well over a week.

“She had relapsed,” Mary Ann told me.  

When they went back to the hospital, there was more bad news, but Abbie would again rebound.

“There was still some sense of hope,” said Mary Ann. After spending almost a month in the hospital, Abbie was able to return home with a portable device that enabled her parents to drain her lungs. “Abbie put it in a little Hannah Montana bag, a little purse, and carried it around with her,” Mary Ann remembered.  “This whole time was like we were on a roller coaster ride.”

And they could never quite see what was over the next summit. In October, after a series of scans, a doctor called Mary Ann and told her that things looked very bad.  “Evidently rhabdomyosarcoma is very aggressive when it relapses,” she said. “The whole lining of the lung was covered and then it squished her heart.  They were lining us up with hospice and we weren’t anywhere near that emotionally.”

Nor was Abbie.  Another round of chemo seemed to do the trick. Abbie bounced back.  “They were all amazed at how well she was doing,” Mary Ann recalled. “She even got to go trick-or-treating, and through the end of January she was jumping around and running.”

“That was also about the time she went rock climbing at a birthday party,” said Jeff. “And Abbie was still climbing up farther than most of the kids.”

Abbie Waters had once again defied the cancer.  She was a survivor and taught those around her more than a thing or two. 

“Abbie was our world,” said Mary Ann. “She was filled with life and zest and she cherished her friends more than anything else. She taught us to cherish our friends.  She taught us a lot.”

Abbie’s unflinching optimism set her apart from everyone else. “The neighbor lady who watched her when she was little called her Happy Abbie,” Mary Anne said. “Because she was always happy.”

That’s what her first grade teacher, Dana Gum, also remembered.  “When she was in my room for first grade Abbie just lit it up,” Dana told me.  “Just a bright smiling face. I never saw her sad, never saw her unhappy in any way.  Abbie was like a little mother hen to the boys, and to the girls she was everybody’s best friend. She was just always happy and excited about whatever we were doing.”

Dr. Bagwell was also struck by Abbie’s sheer joy to be alive and she became one of his favorite patients. “Abbie really touched my heart in a special way, and all our patients touch our hearts,” he told me. “But with Abbie it was quite different. She had an incredible spunk about her.”

One of Abbie’s oldest and dearest friends, Emily Welch, remembered how Abbie was there for her when she had a bone cyst removed. “Abbie was such a good person,” Emily said. “She was having her own problems and she came to see me and she wrote me, even though she was having terrible pain. She was there for me.”

Abbie loved her friends and parents and teachers best of all. But she also loved Justin Bieber and Hannah Montana and pinwheels and play dates and swimming and fingernail polish. While she was in the hospital, Abbie began painting the nails of nurses, and at least one doctor. “She was doing the nails of the nurses and the next thing you know we’re making rounds and there appeared a Styrofoam cup at her bedside on the table with TIPS written on it,” said Dr. Bagwell. “She had a long line of nurses and student nurses and nursing assistants who were waiting for Abbie’s Nail Salon to open.” 

On the day of her discharge, Abbie asked her doctor and friend for a favor. “She said with that impish look in her eyes, ‘I want to do your nails,’” Dr. Bagwell said. “What could I say? And as you can see on my office door there is a picture of me with bright pink nail polish on.”

By early February 2011, the cancer had returned with a vengeance. Abbie began hemorrhaging.  “That was very painful for her,” Mary Ann remembered. 

She received infusions of blood, but her body could longer handle the chemo that had kept her going. “At the beginning of April we started planning for her birthday which was on the twentieth,” Mary Ann said. “She wanted her friends over at the house all day and she wanted a Justin Bieber birthday cake.”

On the morning of her birthday, Abbie selected her clothes with great care and dressed with precision, then waited by the front door for her guests to arrive. All day long, people were coming and going, and that night Abbie wanted to go to the movies.  Everyone gathered as the cake was brought to Abbie.  

She blew out the flames on nine tiny candles, sending her breath over an image of her beloved Justin Bieber who stared up at her from the flatland of the birthday cake. 

After watching Soul Surfer, Abbie and her friends were all going to have dinner with their parents at Northside Grille, which had become something of a tradition. But on the way home from the movies, Abbie had a change of heart.  “Mommy I’m not feeling so good,” Abbie said. “Can we go home and Daddy go to Northside Grille.” 

So and Abbie stayed home and talked about what a great day it had been. And then Abbie asked her mother this: “Am I going to die tonight?”

“No,” said Mary Ann. “We’re going to cuddle tonight.” 

The night was long and hard for Abbie, and in the morning her parents took their daughter to the hospital.

“Abbie had made us promise that if it ever got really bad we would tell her,” Mary Ann said. “But in our minds it was never really bad.”

This time it was different, and Mary Ann and Jeff told their daughter how bad her situation was. That day, Holy Thursday, Abbie told her mom, “I will have to tell my friends.” And her friends were contacted.

Abbie wanted to know about the second life. “She quizzed everyone in the room, and there were a good number of people in the room,” Mary Ann said. “She didn’t want to die. She screamed at the top of her lungs that she didn’t want to die.”

Everybody there told Abbie they believed in the afterlife, which seemed to soothe her. For her part, Abbie said she believed in reincarnation and suspected she would come back one day as Justin Bieber’s daughter.

Mary Ann had sent emails to Holton Elementary School and the parents of Abbie’s closest friends, and people started arriving in droves. 

“Mr. Hudson came, Miss Gum came, Miss Oliver came, Miss Prentiss came, Miss Smart came, the doctors, the nurses came, and lots or our friends and the kids came,” said Mary Ann.  The room was packed. 

By that time, Abbie couldn’t talk and breathe at the same time, so her words were infrequent. At Abbie’s request, Mary Ann talked to the girl’s friends. “I told them what was happening and they held her hand,” said Mary Ann. 

At about seven that evening, the kids left the room and the family was alone with the nurses and Dr. Bagwell, those who had been there since the beginning of Abbie’s ordeal. 

“It doesn’t hurt when you die,” Mary Ann told her daughter. “It hurts while you’re living, but the actual moment when you die that does not hurt. I promise you it does not hurt.’”

And Abbie slipped away a couple hours after her friends left. And there was no pain in it.

Abbie had prepared for her own death.  In February, she picked the color of wristbands that bore the simple legend: Abbie’s Peeps. She ordered 600 of them so everyone at her school would have one to remember her by. 

They arrived two days before her death, on her ninth birthday.

Over the next month several remarkable things would happen that would bring Abbie home, again and again.  Not long after her death, Father Fred Feusahrens celebrated Abbie’s Mass of Christian Burial. Later, in the courtyard outside St. Paul’s Catholic Church, Abbie’s parents and friends released living butterflies from paper envelopes.   While the others flew away to graze among flower petals, one, the largest, which represented Abbie, flew back to her father’s outstretched finger. “We tried to get the Abbie butterfly to go away, and it wouldn’t,” said Abbie’s good friend Emily Welch. “It just stayed there.  So all of us said to the butterfly, ‘Abbie,  go on,  go up to heaven.‘ And then she flew off and it was an amazing sight.”

A few weeks later, more than a thousand people gathered at Holton Elementary School in honor of Abbie Waters. There was dancing in the gym, a bouncey house outside, games, wheelchair races, and, of course, fingernail painting. The Holton Choir sang an inspired rendition of “Rockin’ Robin”, and, later, one of the most moving interpretations of Leonard Cohen’s “Hallelujah” I have ever heard.  

It was a bright, clear early spring day, and something amazing happened as all watched.  

“Dr. Bagwell grabbed me and showed it to me,” Mary Ann remembered. “It was a beautiful rainbow and it went straight across the school. I remember the kindergarteners started chanting her name, which was wonderful. It was exactly what she would have wanted.” 

And the students all saw the rainbow for what it truly was—not just an anomaly of nature. They saw it as Abbie’s broad smile.  I saw it too, that crystal blue sky day, imprinted with a vibrant rainbow that had no business being there.

I am not sure what miracles really are. Sometimes, I think they depend entirely on personal perception. Too often we are numb to our surroundings, our senses dulled by the rote of routine, the grind of daily living. It takes determination to train our senses to be on alert, though maybe, in the end, this has more to do with neurochemicals and synapses and the packets of information etched on neurons than it does our own will. I don’t know. Yet, undeniably there are times when our antenna flicker to life, stimulated by every small thing around us. And at these times we embrace it all, as if we are aware, on some level, that nothing lasts forever. Nothing. 

There were miracles in the rainbow and the butterfly; I’m sure of that because that’s what the kids said and they would know. Their antennae are always active. But the greatest miracle is in the living. All of it, every single moment. And if Abbie in her life, no matter how brief it was, instructed us in understanding this then Abbie still lives. And not in a purely metaphysical or theoretical or spiritual way. For Abbie did live among us and her presence is still felt within us. There are hundreds, if not thousands, of people—women, men and children— who carry Abbie with them. She is part of us now, imprinted on countless neurons within a thousand skulls.