By Tori Phelps
A new book from Northwest Florida resident Bill Wade celebrates the power of hope and faith in the midst of every parent’s worst nightmare.
It’s been twenty-five years since his fifteen-year-old son, John, died from complications of cystic fibrosis, but Bill Wade still finds it difficult to get through a conversation about John’s life and death without choking up. Clearly, it’s the kind of loss that never goes away. Yet his recently published book, Facade, focuses not on darkness, but on the grace and peace his family found even as John fought—and lost—his battle.
Facade isn’t a Dateline-style chronicle of John’s disease. Instead, it’s akin to an invitation to browse the family’s private scrapbooks. The slim volume features brief reflections from Bill at different points in the journey, poems written by all four family members (John and Bill, as well as older son, Galen, and wife, Noel), Bible verses and thought-provoking quotes by everyone from Hemingway to Lincoln. Illustrating the pages are personal photos, which are at turns both fun—the pumpkin decked out for Halloween in wire-rimmed glasses and spiky grass hair—and breathtaking—the numerous sunsets that seem to symbolize the beautiful, fleeting nature of John’s time on earth.
At a mere eighty-one pages, Facade appears to be an easy read. It’s not. Though there isn’t a self-pitying line in the book, it’s impossible to remain unaffected when reading about Bill and Noel at their child’s side as he slips away or upon viewing a picture of the fragile, four-year-old John receiving a breathing treatment. You can’t help but think to yourself, “How could I ever live through that? How did they?” But that’s the very point of the book: that they did live through it and came out the other side not permanently broken, but rather filled with a new understanding of what awaits us all.
Life after a Death Sentence
Already the proud parents of a healthy son, Galen, Bill and Noel expected nothing different when John was born in 1969. But within a year or two, they knew something wasn’t right. “By the time John was two years old, he had been ill a lot and finally Noel said, ‘There’s something going on,’” Bill recalls. “We changed doctors, and the new pediatrician told her about the tests he was going to run. One of them was for cystic fibrosis (CF). We looked it up in the encyclopedia and knew immediately that’s what it was. John had all the symptoms.”
When the official diagnosis came, Bill says the family was understandably devastated. “It was like receiving a death sentence because, at the time, the life expectancy for someone with CF was fifteen.” As it turned out, this was all too accurate for John.
Although some people have a relatively mild form of CF, John’s case fell on the severe end of the spectrum. In fact, he was hospitalized immediately upon diagnosis and nearly died then. When he got out of the hospital, the Wades’ life—and Noel’s in particular—was turned upside down. “CF patients need constant treatments to clear out the lungs,” Bill explains, “along with a special diet, physical therapy, doctor and hospital visits, etc. This was more than a full-time job for my wife. It was very physically demanding, but emotionally, it’s excruciating because there’s this sentence hanging over everyone’s head.”
Despite the shadow of CF, Bill and Noel were adamant that both of their sons experience as much “normal” life as possible. Bill’s job as an Atlantic Richfield executive took the family all over the U.S., providing opportunities for the creative, impish John to explore his passions. “We tried to balance getting the right care and letting him live a life that was about more than doctor and hospital visits,” Bill says. “For example, he loved comic books and cartooning, so he took a class from a Walt Disney animator. John created an original character, Gil the Alligator, which is the photo on the front cover of Facade. He enjoyed his life, and it was very full.”
That assertion isn’t just wishful thinking on the part of a loving father. John himself attested to the richness of his life in his poem, “Destined Fate,” which appears in the book. It features the line “you are destined to meet a life that is complete,” a sentiment that provides reassurance to John’s family even today.
A man of science—he earned an undergraduate degree in chemical engineering—Bill admits that faith had never been part of his life before John was diagnosed and certainly not in the decade afterward, when he questioned how a deity described as “good” could allow such suffering for his son. But when doctors said ten-year-old John had a year to live, Bill’s search for God began in earnest. “Faith had always been there for my wife, but I was trained as a scientist, and I had a hard time accepting something I couldn’t see, measure or touch.”
As he describes in Facade, Bill asked God to give him a sign and was immediately pointed toward a Bible passage that resonated deeply. “All I can say is I knew it was a message for me. If I had heard the same experience from anyone else, I would have said there was some other explanation.”
But as he received more signs, Bill moved into a state of cautious faith. Part of that was prompted by the fact that John did not die within the next twelve months. Instead, thanks to Noel’s insistence on holistic elements like dietary changes and supplements—dismissed by doctors at the time but now part of standard CF protocol—John enjoyed some of the best years of his life rather than an immediate death.
It was not a lasting reprieve, however.
When the end came, comfort was nearly impossible to find. One bright spot for Bill and Noel was a poem called “Gentle Breeze” written by eighteen-year-old Galen. “He shared it with us when we got home the day John died,” Bill remembers. “It’s a foretelling of what’s about to happen—what had actually just happened—in the manner of: ‘This is the right time, and it’s the way things are supposed to be.’ It was an incredible comfort to us.”
Another poem also brought solace to the grief-stricken family. It was called “Facade,” and Bill found it on John’s computer after his death. “He must have written it very shortly before he died, and he never shared it with us. I think he had come to understand that he was about to die, and he knew it wasn’t something we could handle. In some of his other works, John was asking questions. In “Facade,” he was given his answers: that death is a glorious thing and not at all what we think it is.”
Hope and Happiness
Bill and Noel had kept journals full of notes and poems over the years as a much-needed outlet, but it wasn’t until he retired as president of Atlantic Richfield about ten years ago that Bill thought about collecting his thoughts into something cohesive. Without knowing what form it would ultimately take, Bill’s goal initially was simply to put together the family’s story for Galen, now forty-five, and his children. “I wanted them to know there is a God, and He’ll be there in difficult times.”
Bill got more than he bargained for, though. “I went from a ‘maybe’ believer—maybe there’s a God and maybe He’s good—to a true believer in God going through the process of writing this book because, looking back at the string of events I recorded, it’s just illogical to think it’s all coincidence,” he says.
After finishing his self-assigned task and sharing it with close family and friends, he put Facade aside. Then in the summer of 2009, Bill returned to the book as the dual milestones of John’s fortieth birthday and the twenty-fifth anniversary of his death approached. “I decided I was going to self-publish it, and in the middle of that process, I experienced the extraordinary event recorded in the postscript. It confirmed I was doing a good thing. I was put in touch with The Idea Boutique, and things fell into place quickly.”
Bill doesn’t see Facade as a testimonial. Rather, it’s his own insight into issues every human faces: love, loss, death, God and what comes next. “I’m not trying to convince anyone of anything,” he insists. “With this book, I’m simply sharing our experiences. And hopefully people who’ve had great loss will gain the knowledge that God does care and really can intervene in ways that help. I want it to give people hope because it’s hell to be going through loss without hope.”
Two and a half decades since their youngest son’s passing, Bill and Noel have left behind the gypsy nature of corporate life and are firmly settled in the Florida Panhandle. After a career-driven stint in Alaska, Louisiana-born Noel insisted the couple invest in a home somewhere warm. “We bought a house in Seaside in 1990,” Bill says. “Then we bought some land a few miles down the road and built our dream house on the beach. This is home; we love this place.”
And though it seemed unimaginable at the time of John’s death, Bill describes life now as “very, very good.” He spends his days spoiling his granddaughters, playing tennis, catching sunsets on the coast, volunteering—and now sharing the lessons he learned from John. “Through his search and his words, John taught me not to fear death, that there is something more. I have a firm conviction that death is not the end of things; death is a facade, and we move from this experience to something else. That’s a really powerful thing if you can come to believe it. Because of John, I believe it.”
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All net proceeds from Facade benefit the Cystic Fibrosis Foundation. Facade can be purchased at Amazon.com (ISBN: 9780615368597), Sundog Books in Seaside, Florida, and Magnolia House at Grand Boulevard in Miramar Beach, Florida. For more information about Facade, please visit www.deathisafacade.com