This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

Alex: The Life of a Child

Alex: The Life of a Child

No, it was not the best idea I’d ever had to read “Alex: The Life of a Child” among strangers.

I knew this book was going to rip my heart out. But, when else was I going to have the time?

Time, time, never any time. I used to have time to read. Two young babies, a husband, a career, a pile of laundry ever replenishing itself. My time for books is cut short. I still love books. I’ve always loved books, and stories. But, I have in the last few years used the half hour to one hour I’ve got a day that’s not tied to some duty to zone out to something mindless, or write. That’s a shame – reading makes you a better writer. I need to pick my old habit back up again.

As painful as it was, I’m so glad I decided to read this story, beautifully written by Frank Deford. He is a journalist many would recognize for his commentary on NPR Morning Edition. He’s been a sportswriter for a long time, and in that world, he is at the top of his game.

I started reading the book at the airport in Oklahoma City. The little girl dies on the first page. Then Mr. Deford takes us back. I boarded the plane.

The book is about his daughter, a little girl, Alex, who was born with Eli’s disease, cystic fibrosis. It’s about her short life and her death. She died at 8 when her lungs stopped working. She was scared and unable to breathe. This is all 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 Laila. Her love of 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 hurt 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?”

What she meant was — wouldn’t this have been fun, if she were to live? Wouldn’t this have been fun? Life together. The good times she was going to miss. That sweet little child knew her time was fleeting.

That scene nearly did me in. Turbulence. Blinking. Looking at the plane ceiling. Don’t cry don’t cry don’t cry. Deep breath. Whew. Ok, moving on. Deford is a stunning writer. His words made me feel. Smile. Think – think, don’t waste time. Find reasons to be happy. Those words pulled my heart through a paper shredder. Just a few hours ago I could never find the time to read. Now I couldn’t stop reading.

From Oklahoma City, I flew to Atlanta. The man sitting next to me asked what I was reading. He recognized Deford’s name on the cover.

“It’s a book about a little girl with cystic fibrosis,” I said. “Alex. Mr. Deford’s daughter died at 8. I’m actually on my way to a conference for the Cystic Fibrosis Foundation. My son, Eli, has the same disease. But, things are different now…”

My voice cracked. I couldn’t spit out a sentence. The man looked away. I’d gotten emotional, and the poor guy only wanted to know what I was reading. I can’t stand crying in public. I got out of my seat and ran to the bathroom. I looked at the ceiling. I blinked and blinked before giving up and having a sob and taking deep breaths and fanning my red eyes, feeling embarrassed.

Right, I was going to a conference. Reason being: my son has a deadly disease. I write about that a lot here, but day to day, I don’t think about ‘deadly.’ I prefer not to confront it. What purpose would that serve? The man had made an innocent inquiry and somehow in a moment the gravity of my son’s disease just hit me like it does from time to time. It hit me that I was traveling far away from my family to learn more about what I could do to stop ‘deadly,’ the thing I always push out of my mind. In explaining the book, I had to own up to the fact I was on this airplane because I don’t want Eli to die young.

Why read this book at all?

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 understand how far we’ve come in the 34 years since Alex Deford died. Journalists are strange. Hey, let’s put our mental state/ physical being in harm’s way to get to the raging wildfire/ 12-time convicted felon/ homicide/ destruction zone/ ass-numbingly boring public meeting. Gotta get that story.

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

I returned to my seat. The man had plugged in his headphones and occupied himself with a magazine, mercifully. I closed my eyes and took a break. We hit more turbulence and then landed.

In Atlanta, I had about five minutes to grab a slice of pizza. Back on board to grab my connection to D.C.

Alex has a new white dress for Valentine’s Day. She is happy and laughing, but then she begins to cough. She coughs blood all over her white dress and she’s horrified. Devastated. Then she is standing up to a young doctor, who told his cadre of charges her procedure was not painful. The little girl yells that it is. That he shouldn’t tell people things that he doesn’t know are true. Her lung collapses in the hospital on a separate occasion. She is alone; another arrogant doctor refuses to believe her for six hours, during which her life is at risk.

We were getting back to the end. My God, I could hardly stand it.

More turbulence. The plane I’m on is descending and the little girl with so much courage and strength is dying. It is my worst nightmare, the way that she goes.

I closed the book, put my hoodie over my head and sobbed in silence for a half hour.

People were looking. I didn’t care any more. Sometimes there’s no way to avoid making a scene.

Alex Deford, more than anything else, wished for a cure for the terrible disease that took her too soon.

It’s not yet happened. We are closer than we’ve ever been.

We have to cure cystic fibrosis.

Mr. Deford was kind enough to answer my questions via e-mail recently. Tomorrow, I’d like to share them here.

Thanks for reading.


3 thoughts on “Tears at 37,000

  1. Bill says:

    really touching, Julie. will be interested to see tomorrows blog.
    Really like your recent articles, way to go!!


    1. j&m says:

      Thanks Bill! πŸ™‚ Great to hear from you!


  2. sethinaw says:

    Thank you for sharing this x


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