It’S Been a Good Life, Dad: My Son’S Struggle with Cystic Fibrosis

By Jerry E. Hendon

Its Been a Good Life, Dad!My Sons Struggle with Cystic Fibrosis portrays a young manKevin Hendonwho lived his eighteen years with cystic fibrosis ever present. The author, Jerry E. Hendon, tells the story of his sons life in the first part of this biography. He presents the diseases harsh truths and the severe limitsand of medicines ability to respond to the diseases challenges. With equal clarity, though, he reveals the energy and determination his son showed in the face of his diagnosis.

In the second part of Its Been a Good Life, Dad!, Kevins poetry takes center stage. He shares his feelings of isolation and frustration. He ruminates on love, lust, and romance. He expresses his observations about friends and school. He reflects on the place of religion and family in his life.

The final two sections of the book sample the recollections of people who knew Kevin and share the abiding influences of Kevins spirit in the wider community of those his life has touched.

Whether you have cystic fibrosis or know someone who lives with this disease, you might find yourself turning the pages of this portrayal and feeling the temptation to echo the authors despair when he said, What a miserable life! But in the face of this disease and in response to such tugs to give in to despair, Kevins responds, Oh, no. Its been a good life . Its been a good life.

• Language: English
• Publisher: iUniverse
• Release date: Jan 7, 2016
• ISBN: 9781491778388

Jerry E. Hendon

Jerry E. Hendon worked as an environmental, health, and safety engineer in the petrochemical industry for forty years. He had a son, Kevin, who lived an inspiring life before dying of cystic fibrosis at eighteen. Now retired, he and Jaye, his wife, live in The Woodlands, Texas.

Book preview

It’s Been a Good Life,

Dad

My Son’s Struggle with Cystic Fibrosis

Jerry E. Hendon

43742.png

It’s Been a Good Life, Dad

My Son’s Struggle with Cystic Fibrosis

Copyright

© 2016 Jerry E. Hendon.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.

iUniverse

1663 Liberty Drive

Bloomington, IN 47403

www.iuniverse.com

1-800-Authors (1-800-288-4677)

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

ISBN: 978-1-4917-7839-5 (sc)

ISBN: 978-1-4917-7838-8 (e)

Library of Congress Control Number: 2015919675

Print information available on the last page.

iUniverse rev. date: 01/06/2016

Contents

Foreword     Dayna Steele

Preface

Acknowledgments

Introduction

Part 1     Kevin’s Life

Chapter 1     Children in the Wilderness

Chapter 2     Kevin’s Early Years

Chapter 3     Supporting Cystic Fibrosis Research

Chapter 4     Changes and Adventures for Kevin

Chapter 5     Turning Points

Chapter 6     Life on 4 North

Chapter 7     Coping with Cystic Fibrosis

Chapter 8     Step by Step: Working Together

Chapter 9     A Traumatic Time

Chapter 10     Sixteen

Chapter 11     Love

Chapter 12     Good Times, Bad Times

Chapter 13     Kevin’s Writing

Chapter 14     Kevin Struggles with His Mortality

Chapter 15     Magic Moments

Chapter 16     Visiting Kevin’s Birthplace

Chapter 17     A Little Flicker of Fame

Chapter 18     Get Up and Make It Work

Chapter 19     The Last Long March Together

Chapter 20     The Last Lap

Chapter 21     On Vacation

Chapter 22     Healing

Chapter 23     Living After

Epilogue     by Torchy

Part 2     A Selection of   Kevin’s Poems

Feelings of Isolation and Frustration

Love/Lust/Romance

Friends and School

Religion

Family

Feelings of Struggle and Survival

Kevin’s   Unfinished Poetry

Part 3     Responses from   Kevin’s Memory Table

Part 4     Kevin’s Spirit Survives

For Kevin, my son and my hero—

For all he was and

For all he could have been.

As a boy, he was a better man than all of us.

I wished for a chance to know the man that wasn’t to be …

—Sarah Wuensch,

friend and classmate,

February 2013

To cystic fibrosis victims everywhere, but especially to those who touched my life personally and showed that CF should stand for courage forever, not cystic fibrosis.

In no special order, they are Tammy T., Jennifer B., Cassie T., James S., Melissa R., Sandy M., Ashley W., Sharon B., David G., Michael M., Jeremiah G., Chris K., Kent W., Stephen B., Jacob W., Allison S., Brian A., Ted H., Sherry S., Susan P., Janis L., Alice M., Kim J., Nicholas G., Mark B., Allen N., Cliff M., Robert W., and Heidi.

Also to Dr. Gunyon Harrison, Kevin’s primary care doctor, for his expert care and his compassionate manner; Dr. Mark Sands, Kevin’s therapist, for his understanding and ability to help a struggling, depressed teenager overcome his anger and frustration and become a role model in how to deal with one of life’s toughest situations; and Dr. Mark Brister, Kevin’s pastor, who helped Kevin understand and deal with the spiritual struggles in his life.

Foreword

Dayna Steele

Random acts of kindness are something I enjoy doing for others. I like helping others, and it is appreciated by the recipient. Of the many times I have done this, there is one that not only made the recipient happy but also became a life-changing event for me. I encourage you to read this book to learn about the rest of it. It just might change your life too. Here is part of the story.

It was the summer of 1986, and I was wrapping up my disc jockey radio shift on KLOL, the leading rock station in Houston at that time. I was excited about seeing my mentor, who had just arrived in town with the band he managed—a traveling rock ’n’ roll circus by the name of Van Halen. I had plans to head over to the venue later in the afternoon to eat dinner with that motley crew and say hi to the guys. It was always a heady experience wearing an all-access pass and strolling in the backstage door like I owned the joint.

A few weeks earlier, I had read a local newspaper article about a young man living with cystic fibrosis who was a huge Van Halen fan. This inspiring teen, Kevin Hendon, had quoted Van Halen throughout the piece. I forwarded the piece to the band’s office in Los Angeles. Impressed, they decided Kevin was to be a special guest at their concert this night, but a few days earlier he was readmitted to the hospital and had to cancel his dream rock ’n’ roll experience with his favorite band.

As you read this personal account of Kevin’s life and legacy, you’ll discover the amazing story of what Van Halen did that afternoon to create memories for many of us in Kevin’s short life. You will also learn how Kevin impressed the band and why Kevin’s story has compelled me to volunteer to help cystic fibrosis charities whenever I am able to.

Long live rock ’n’ roll—and my guardian angel, Kevin Hendon.

—Dayna Steele

Preface

This book is the story of Kevin Taylor Hendon’s life. Kevin died at the age of eighteen, following a lifelong battle with cystic fibrosis. Before he died, he asked me to tell his story, and I promised him I would.

It is a sad story, but that is part of life, and I owe it to Kevin, as well as all people with cystic fibrosis and their families, to tell his story as it really was—the good and the bad.

Kevin grew up knowing he wasn’t going to live long, but he lived in a way that has inspired and touched many people. I believe that as you read his story, you will laugh, you will cry, and whatever your life’s circumstances are, you will be inspired to try to make the most of every day and live life to the fullest.

Acknowledgments

To Jaye, my wife, who never met Kevin in person, though after years of putting up with my promise to tell Kevin’s story and listening to me trying to track down the smallest piece of memorabilia, she must feel as if she spent every day of his life with him. I credit the very existence of this book to Jaye and her care for me. A wonderful woman who makes friends easily and who has many interests of her own, she might have objected roundly to even living in the same house with the promise I made to Kevin, but Jaye has accepted my drive and frequent preoccupation with patience, understanding, and genuine grace. I’m eternally grateful to you, Jaye. I know this book would never have seen the light of day without your love and forbearance.

To Ann Gray Hendon Dowling, Kevin’s mom and my first wife, who transformed into a lionhearted warrior-mother from the first moment Kevin’s illness was fully diagnosed. Ann rose up like a towering angel to protect her son and take on all the challenges, learning all there was to know about cystic fibrosis. Adapting her life to Kevin and his needs, she faced every challenge with a sometimes frightened, but nonetheless willing heart, whether she was finding her way through the labyrinthine Texas Medical Center or eventually discovering the right office, the correct contact—all the while with a chattering toddler on her hip. Ann never left Kevin’s side as the years passed and the disease grew ever more threatening until, finally, she gently talked him through his last moments on earth, always loving and encouraging, and gave him the grace, courage, and permission to let go and pass on. Kevin summed up Ann’s place in his life with one of his poems, which ended, But the best way to show what love is / Is for me to say, ‘Well, just look at me and my mother.’

To my sister-in-law, Patsy R. Gray (her legal/professional name), Torchy (her lifelong family nickname), or Torto (Kevin’s toddler variation), Ann’s soul mate sidekick and Kevin’s soul mate playmate, who planned to be a scholar/professor of a certain kind but changed her life plan when Kevin’s illness was discovered. After finally finishing her dissertation, Torchy moved from California to Texas to join our family and hang out with us in both good and bad times.

Genuine and sincere thanks to Dayna Steele, who encouraged me to quit talking about writing Kevin’s story and to do it. Also for her ongoing encouragement and guidance on how to tell his story, and especially for telling thousands about Van Halen’s visit to Kevin in her speeches regarding what she learned about success from the world’s greatest rock stars.

To Kim Arnold, Tracy Board, Kenny Block, Ron Burns, Dixie Burns, John Culp, Susan Greer, Dr. Gunyon Harrison, Dr. Carrie Zwerdling Kluger, Marilyn Malone, Helen Marsh, Gena Monroe, Robin Niemeier Rhea, Linnea Schlobohm, Catherine Thiele, Sarah Troscher, Sarah Wuensch, and Stacy Zavodny. Each of you was generous with your recollections, memories, and time. I will be forever grateful for your willingness to help me discover the complete Kevin and tell his story.

To Wintress Odom and Stephanie Hashagen, who helped me organize and write Kevin’s story.

To Peggy Proctor. The part of the book containing Kevin’s poems was included because you first suggested writing a book about Kevin’s poetry.

To all those who were a part of Kevin’s and my life. You may never know how much your care, support, and love sustained me, especially at some of my darkest times. I couldn’t begin to enumerate all of you, and it wouldn’t be fair to leave someone out because my memory failed to recall each one.

However, having said that, it would be terribly remiss of me to not acknowledge a few.

To Kevin’s grandparents: They always stood at the ready—hearts open, cars gassed up, and wallets filled for any special needs that might be wanted. They were magnificent. A chapter, at least, could be written about each grandparent, who brought unique talents to bear when looking after Kevin.

Linda MeMaw Gray sat with Kevin at a table or on the floor, playing with many farm-themed Fisher-Price toys. As they made up chores, songs, and dialogue for each character, the figures became more and more real to each of them and, eventually, to us. We would sometimes mention a character at the dinner table as if he were seated right beside us. No task was too much trouble if it entertained Kevin. She was always doing special things for him. For example, she knew Kevin loved reading the Family Circus comic strip, so she’d cut every day’s comic out of the Mayfield, Kentucky, newspaper and paste it into a scrapbook that she kept just for him. Every time she came to visit us in Baytown, Texas, she’d have a new Family Circus scrapbook for Kevin to read.

Clay Poppa Gray took Kevin on more manly playdates: He taught Kevin to shoot a rifle at a target, and he also taught Kevin the rudiments of heavy equipment that he ran. Every summer, when Kevin came to Kentucky for a visit, Poppa Gray would buy him a pony. Poppa Gray didn’t have any use for a pony when Kevin wasn’t around, so he would sell the pony at the end of Kevin’s visit. When Kevin returned the next summer, they’d go and buy a new pony. Kevin named each and every pony Freddy.

Grandma Audrey and Grandpapa Hendon: One of their most difficult trials in life was watching their first grandchild suffer from this terrible illness and watching their son struggle with this terrible situation. They coped partially by helping with fund-raising for CF research.

They also introduced Kevin to gardening and fishing. One of their favorite memories was harvesting potatoes and hearing Kevin tell Grandma Audrey, Let me help unbury one. Summer vacations and Christmas with the Hendon grandparents were special times for Kevin because he had three cousins to play with.

To Aunt Patsy Tricarico, my sister, a kind, caring, generous soul and a caretaker at heart, who unfailingly sent cards and bought gifts to send to Kevin. She also spent time as one of Kevin’s family caretakers while he was in the hospital. Thank you for ordering that World War II–style bomber jacket Kevin wanted. Unfortunately it was on back order, and Kevin died before it arrived—but it meant so much that you tried to do that for him. Thanks, Patsy, for your love for Kevin.

To my cousins, aunts, uncles, and nephews. Thank you for the many cards, phone calls, and prayers.

To our friends. The number of our special friends from all over the country prescribes against a list. Three church couples, however, can proudly stand to represent the whole: Patsy and Dennis Dowling, Scharlotte and Sam Hughes, and Donna and Jerry Lyons.

To Scharlotte Hughes, Donna Lyons, and Patsy Dowling (deceased): Your unfailing willingness to come to the hospital and entertain Kevin by spending untold hours playing games he enjoyed to distract him from his illness was invaluable. Hours of made-up card games with names like Headache and Smash, Bang, Put ’Em Together—as well as real games like Trivial Pursuit, Rummikub, Uno, and similar games—often had those ladies on the floor looking for tiny toys and lost cards. Suffice it to say that they were willing to play baby games with the child, Trivial Pursuit with the growing adolescent, and any kind of video game with the older teen.

You walked into the hospital with somber feelings and expressions, but just before you walked into Kevin’s room, your faces would turn on that bright outlook—only for you to emerge from the room and walk toward the elevators with uncontrollable tears running down your faces. You were angels on earth to Kevin.

Thanks to other family members, close, dedicated friends, and our always supportive church family. Kevin was blessed at every step of his journey with warmhearted, compassionate people—most of them also parents—who gave generously of their time, imagination, and loving support as any and every need arose.

The three towns of Baytown, Texas (Kevin’s home), Mayfield, Kentucky (Kevin’s maternal grandparents’ home), and Murray, Kentucky (Kevin’s paternal grandparents’ home), represented the best of America. They took on Kevin’s cause when they could by collecting money during CF drives and giving support in every way imaginable.

To the community of Baytown, Texas, especially Memorial Baptist Church members and staff, the Goose Creek Independent School District faculty and staff, my coworkers and colleagues at Exxon, neighbors in Park Ridge Bend subdivision (Kevin’s neighborhood), and North Harris County Community College (Torchy was on the faculty). Your concern, support, and kindness will never be forgotten.

To the Baytown Sun, for its many articles and pictures about Kevin, and especially to Linnea Schlobohm, a feature writer, for her stories about Kevin. Also to Brenda Dykes, who first suggested to Linnea that Kevin’s story was one worth telling.

To Bonnie Gangelhoff, a reporter for the Houston Post, for your story about Kevin and your memories of him. Also to Craig Hartley, the photographer who took the pictures included in the story.

A strong and abiding appreciation to each of you who touched Kevin’s life and all the good that you represent. Kevin’s own five-word summary of his life—the title of this book—is a tribute to you.

Introduction

This book has four parts. Part 1 is the story of Kevin’s life. Part 2 is a selection of many of Kevin’s poems. Part 3 is memories of letters received after Kevin died. Part 4 is Kevin’s legacy.

Part 1 is based on facts. His story is a re-creation, not of how I want him to be remembered but of how it actually was for him. It was very important for me to tell Kevin’s story this way. Over the years, as Kevin grew up, he was frustrated from his experience with publications, movies, television, and so forth, because he didn’t think they typically reflected the reality of what life was like for people with cystic fibrosis. He and I had discussed this topic more than once, so without a doubt I knew what he wanted.

Knowing Kevin’s life wasn’t likely to be long, I had kept pictures, records, and other artifacts of his life. I did this not in anticipation of ever telling his story but to have memories of his life if he didn’t live long. I had boxes and boxes of material to help me accurately record his story. After Kevin died, I learned while going through his personal possessions that he had also kept similar items. Hardly any editorial license was used in recording his story.

Part 2 contains Kevin’s poems, which gives one more insight into Kevin and his own perspective of life with cystic fibrosis. Writing was one way Kevin coped. These poems have not been edited to correct or improve the grammar, punctuation, and so on; they have been published as he recorded them.

Part 3 is memories of letters received after Kevin died. One of the things I did when Kevin died was request memories of him. A few of the memory letters are included here.

Part 4 is simply a brief epilogue of Kevin’s legacy and the impact of his life.

Part 1

Kevin’s Life

01JerryandAnnWedding.jpg

Jerry and Ann Hendon, August 1964

Chapter 1

Children in the Wilderness

When Kevin was diagnosed with cystic fibrosis (CF) in October 1969, my wife, Ann, and I had not even heard of the disease. There was no Internet to search for answers, and there weren’t entire cable television channels dedicated to science or health.

Kevin’s aunt Torchy, Ann’s sister, says we were like children lost in the wilderness without a map or a compass, or even a flashlight to guide us. She was right. Ann and I were still young and inexperienced about many things in this world.

When Kevin was born in May 1968, I was in the US Army and stationed at Fort Bragg, North Carolina. I was a captain in a basic infantry army training center and nearing completion of my military obligation.

I was twenty-five years old, and Ann was twenty-three years old. We’d been married four years and were, in many ways, a typical young couple: Ann had a degree in elementary education from Murray State University, and when we’d moved to Ft. Bragg, she’d gotten a job teaching second grade on the military post. It was a tough job, but she enjoyed it. Three months after Kevin was born, we left Fort Bragg so I could begin studying for my master’s degree in chemistry at Murray State University in Murray, Kentucky. After Kevin was born, she quit teaching to stay at home with him full-time. We both sort of figured she’d go back to teaching one day.

It was right around the time we moved that things began to change.

As new parents, we experienced things like colic and diaper rash. Maybe chicken pox or even a broken bone or two might be in our future, but we never expected to hear that our seventeen-month-old son—who wasn’t even toilet trained yet—had a disease so rare that we’d eventually move more than eight hundred miles to seek treatment.

Ann knew something was wrong from the beginning. Kevin was fussy. He wasn’t gaining weight. He cried constantly. When he caught a cold, it would linger for weeks. Our neighbors—another married couple about our age—had a baby around the same time Kevin was born. Ann visited them occasionally, and she noticed that their baby would spend hours in his crib, gazing at his mobile, kicking his feet, and waving his hands. Kevin had a mobile over his crib too—but he didn’t seem to care about it at all.

Maybe if Ann and I had been older, or if Kevin had been our second or third child instead of our first, people would have taken Ann’s concerns more seriously. Even my mother told Ann there was nothing to worry about. Kevin is a Hendon baby, and Hendon babies are all fussy. They grow out of it eventually, and so will Kevin, she said.

The first time Ann brought Kevin in, our doctor—a local doctor who probably meant well—said he probably had a mild case of asthma. After three or four more visits, he decided that Kevin’s only problem was a neurotic mother.

And yes, he used those exact words.

That was around Easter. When September rolled around with no change in Kevin’s symptoms, a friend from Ann’s bowling league recommended a pediatrician in Paducah. It was a long drive, and my mother rode along with us.

The doctor in Paducah wasn’t so quick to dismiss Ann’s concerns. After a preliminary look at Kevin, he had some questions.

Does he have smelly stools? he asked.

Yes, we said.

Does he throw up his milk?

Yes, we said.

And then he asked a question that Ann and I will probably remember forever:

Does he taste salty when you kiss him?

Yes, Ann said.

I think we should arrange for some more tests, said the doctor.

We learned that one of the earliest symptoms of cystic fibrosis is salty-tasting skin. Today cystic fibrosis organizations run kiss your baby campaigns to raise awareness and promote early detection of the disease. That came much later, when cystic fibrosis had become a somewhat mainstream illness, complete with its own walk-a-thons, golf fund-raisers, and TV movies. Today, a typical cystic fibrosis patient can expect to live into at least his midtwenties, and many live much longer than that. In 1989, the gene that causes cystic fibrosis was found. There’s now a medicine to control cystic fibrosis in patients with a certain mutation of the cystic fibrosis gene. It’s taken years of research to get to that point though. When Kevin was diagnosed, the average life expectancy for a child with cystic fibrosis was somewhere around five years.

Ann and I didn’t know any of that yet.

Based on the symptoms we were describing, the doctor in Paducah concluded that Kevin had either a form of severe food allergy or something called fibrocystic disease. He recommended a sweat test to find out for sure. He also gave us two brochures to take home—one about allergies, the other about cystic fibrosis. Both brochures had checklists of symptoms on the back, and Kevin had almost all of them. We didn’t want to accept the idea that our son might have cystic fibrosis. Ann’s mother, Linda, was badly allergic to glutens, so it would make sense that Kevin might be sensitive to them too. Things like that tend to run in families, we told ourselves.

Linda worked at J.C. Penney in Mayfield, a town about twenty-one miles from our home, and about halfway between Murray, Kentucky, and Paducah, Kentucky. Ann, Kevin, my mother, and I stopped by the store on our way home. We wanted to say hello and give Linda the latest news on the diagnosis. Ann had to use the ladies’ room, so she headed off across the store with Kevin in tow. My mother and I told Linda about the tests, and the possible explanations for Kevin’s health problems.

We’ll know in a few days, I told her. The doctor said it might just be allergies. He might not have cystic fibrosis at all.

And then my mother said something to Linda that I’ll never forget: If Kevin really does have cystic fibrosis, we can’t tell Ann. She won’t be able to handle it.

Linda wasn’t the confrontational type, so even if she’d found my mother’s comments offensive, she wouldn’t have said anything. But a few days later, when she told Ann what my mother had said, Ann was livid. She and my mother never got along very well over the years, and a part of me believes this incident had a lot to do with their discord.

In trying to protect people we care about, I think we often underestimate what they can deal with. It’s interesting—we don’t hesitate to give someone an injection, because we know the brief physical pain is necessary to cure or prevent an illness, yet we routinely withhold information or tell little white lies in order to protect our loved ones from emotional pain and ourselves the pain of having delivered it. That’s what my mother was doing when she suggested we not tell Ann the truth, but just as we can’t make needles hurt less, we can’t make emotional pain hurt less by withholding the truth, despite our good intentions. To a degree, this is human nature. We all do it to some extent, but over time I came to realize that in almost every case, it’s better to be honest, but gentle. You can’t stop people from getting hurt. All you can do is try to make their pain a little easier to handle.

My mother was wrong about Ann though. Kevin’s diagnosis didn’t break her. It turned her into a fighter. Ann fought that disease with everything she had. She fought every day for eighteen years.

Ann says living with CF was like trying to outrun a speeding train: First we were walking along, then we were sort of jogging, then we were running full-out. but no matter how fast we ran, cystic fibrosis was faster. But we tried. We never stopped running, even when the train was so close we could feel the ground shaking beneath our feet.

Because we were students on a fixed income, Ann and I were eligible for Medicaid coverage at Jenny Stuart Hospital in Hopkinsville. Hopkinsville was farther away than Paducah, but only by about fifteen miles. We were seen by two doctors: Dr. Young and Dr. Payne. We came to appreciate them very much in the coming weeks.

Since Kevin already had a lung infection, Dr. Young and Dr. Payne hospitalized him right away so they could monitor the infection and make sure it didn’t get worse. They also wanted to perform a few tests to confirm the diagnosis we’d gotten in Paducah.

The doctors started treatment for the infection right away. They also conducted a preliminary sweat test. They pressed Kevin’s hand to a petri dish containing a substance that would change color depending on the amount of sodium in his sweat. CF patients always have high salt content in their perspiration, and the elevation compared to typical non-CF people is so high that the sweat test becomes a clear marker of the disease.

The test came back weakly positive.

Positive … So, that’s good, right? Ann asked.

We had so much to learn.

Because the preliminary sweat test came back positive and was a qualitative test, the doctors sent us to Nashville to get a second, quantitative, sweat test. For this one, they induced sweat by wrapping one of Kevin’s arms in something that looked like Saran Wrap. Then they collected a sample of the sweat and sent it off to check his sodium levels.

Once again, the test came back positive. This time we knew that positive meant bad.

Then they told us Kevin’s life expectancy would be about five years.

_________

That fall was rough for everyone. We spent most of the rest of the year either in Jenny Stuart Hospital or commuting the sixty miles back and forth to see the doctors. During one visit, the doctors wanted to x-ray Kevin’s chest to see how his lungs were doing. I didn’t know this at the time, but toddlers don’t just lie on a table or stand up to be x-rayed. They are put in a small chair and then strapped in to immobilize them. What’s worse, parents were not allowed to be in the room. I still remember Kevin screaming at the top of his lungs, probably scared to death, and there was nothing, absolutely nothing, we could do for him. Little did we know that this intense feeling of helplessness in human experience would become a routine part of our lives.

For the next few weeks, Kevin continued to receive treatment for his lung infection while the medical team worked on finding just the right combination of medicines that would help him breathe and digest food—things most of us take for granted.

Most people think of cystic fibrosis as a lung disease, and that is a large part of CF; one of the major ways that CF manifests itself is through poor lung function and very low resistance to respiratory infections. This is why it’s so dangerous for CF patients to get colds or flu—their bodies can’t easily fight things like that. CF patients secrete extra mucus, which builds up in their lungs and makes it hard for them to breathe. The mucus is also thicker than normal and much harder to cough up because of its high viscosity. It’s a scary feeling that many patients compare to drowning. But there’s more to CF than lung problems. CF also affects the pancreas and the gastrointestinal systems. Patients often suffer from heart problems, arthritis, diabetes, and reproductive issues as well.

Ann and I were inundated by information like this. It seemed like we learned something new about CF every day. We were young, overwhelmed, and exhausted, and our behavior and decision making sometimes reflected this. I look back on these years as a particularly stressful time for me; in addition to dealing with Kevin’s newly discovered illness, I was taking nine hours of graduate courses. I had a heavy workload of reading assignments and research papers, and on top of that, I was working part-time as a teaching assistant.

One night, I drove over to Jenny Stuart Hospital to see Kevin. It was late, and I’d been working on a research paper for school, and I guess I was in a hurry too, because I forgot to put the car in park when I got there. I was halfway to the building when I heard a terrible crunching sound