For mother of child with cystic fibrosis, book about young victim brings tears at 37,000 feet

by Juliana Keeping Modified: June 9, 2014 at 4:22 pm •  Published: June 10, 2014

It was not the best idea I’d ever had to read “Alex: The Life of a Child” among strangers.

I hold my copy while I’m waiting to board a plane at the Will Rogers World Airport. The book’s jacket is yellowed with age, a corner of it torn. I know the book I hold is going to rip my heart out. But, when else am I going to have the time?

Why read this book at all? It’s an old book, published in 1983. The little girl who is the heart of the story, Alex, has the same disease as my 1-year-old son, Eli: cystic fibrosis. She died in 1980, at 8. She died at a time medical care could not keep a child with this painful wasting disease alive to adulthood.

That’s not the case today. In 2015, it’s anticipated that, for the first time, more CF patients will be adults than children. While children still lose their lives, people with CF are also living into their 30s, 40s and beyond. The disease itself, in many ways, remains a mystery. We know my son’s body makes thick and sticky mucus that invites infection in his lungs. His disease is fatal primarily because infection after infection, his lung tissue will scar, robbing him of the ability to breathe. Looking at him, you’d never know he has CF.

This is CF?

At 1, Eli is chubby and energetic. Some with CF get it worse in the lungs than others and have to be hospitalized for infections on and off from the get go. Others have harder digestive issues because of the troublesome mucus. People with CF can need lung transplants to live. Then there is the chance other organs, like the liver, may shut down. I halt my mind from roaming into the future, the unknown. We don’t know when or even if my son will become ill. It’s possible medicine will advance during his lifetime to the point he’ll never have to fight to breathe.

I know the child in the book I’m holding is going to die. I refuse to believe my son will share that fate. Why read something old, outdated — words that don’t reflect the state of medicine today? Words I know will break my heart.

Funny thing about being a journalist. I like to fool myself that I’m reporting, information gathering, when it comes to learning about cystic fibrosis. I command my mind to detach. Detach and get it done, because the job at hand is to understand, and like usual, I’m on a deadline. I had a conference to attend the next day, in which I would learn about all the advancements in science and medicine that would help Eli live. To be a good student, to get the full picture, I needed to understand how far we’ve come in the 34 years since Alex Deford died.

That’s all fine and good, but Eli is my life. I can’t detach.

A father’s story

Author Frank Deford is also a journalist. Many would recognize him for his long-standing commentary on NPR’s “Morning Edition.”

Right away, I discover Deford’s experience with Alex is not sugar-coated or romanticized. The little girl dies on the first page. Then Deford takes us back.

I board the plane.

Alex died when her lungs stopped working. She was scared and unable to breathe.

We take off.

The little girl’s death is made tens of thousands of times worse by the fact that, as you read about this child’s life, you fall in love with her. So much of what Deford said about Alex reminded me of my 4-year-old daughter, Laila, who does not have CF. Alex loved telling jokes, wearing pretty dresses, being silly, singing, dancing and acting. Alex’s sweet, strong spirit leaps off the book’s pages. All that courage. That inner strength — her disease couldn’t penetrate it. She just gets to you.

That’s why it hurts so much to read about the child’s take on her own mortality. Alex knew she was going to die young.

Alex loved making joke messages with her daddy on the answering machine. She loved to laugh, though she tried not to laugh too hard, because it made her cough. After making one message with her dad, she said something like, “Oh, my little daddy, wouldn’t this have been fun?”

Continue reading this story on the...

by Juliana Keeping
Enterprise Reporter
Juliana Keeping is on the enterprise reporting team for The Oklahoman and NewsOK.com. Keeping joined the staff of The Oklahoman in 2012. Prior to that time, she worked in the Chicago media at the SouthtownStar, winning a Peter Lisagor Award...
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AT A GLANCE

Follow along

Juliana Keeping chronicles survival tales at hithisiseli.com. Follow her @hithisiseli or @julianakeeping on Twitter.

How to help

Donations to the Cystic Fibrosis Foundation — Sooner Chapter can be made online at www.cff.org/GetInvolved/ManyWaysToGive/Donate/index.cfm or mailed to CF Foundation — Sooner Chapter, Oklahoma City office, Bethany Bank Tower, 2908 N Peniel Ave., Suite 330, Bethany, OK 73008.

Information

The CF Foundation — Sooner Chapter: www.cff.org/chapters/okc/.

Cystic fibrosis: www.cff.org.

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