This is Eli

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

Yesterday I wrote about the emotional experience of reading Alex: The Life of a Child, by Frank Deford.

Today, I’d like to share an interview with the author.

Deford’s reassuring voice is familiar to many for his sports commentary each Wednesday on NPR’s Morning Edition. He is a senior contributing writer at Sports Illustrated, a commentator on HBO’s RealSports with Bryant Gumbel and the author of 17 books. Deford went multimedia before it was journalism’s buzzword. The guy’s a machine and a stunning and versatile writer.

The book Alex: The Life of a Child chronicles the life of Frank and Carol Deford’s daughter, Alex, and the family’s experience raising a child with cystic fibrosis. Alex died in January 1980 at 8 years old. She was little but loved by many in her short time in the world. With the help of her father’s words, she’s continued to have a big impact. Deford never stopped fighting for Alex in the 34 years since she’s died. He became deeply involved with the Cystic Fibrosis Foundation, serving for years as chair of the organization’s board of directors. He still serves in an honorary capacity. His daughter always wished for a cure. That’s our wish, too.

Alex: The Life of a Child

Alex: The Life of a Child

I tracked Mr. Deford down online and sent him an e-mail asking for a Q&A about his experience with Alex and CF. I had to read his book first, I told him. I’d been putting it off because I knew it would make me sad. It did, but I’m still glad I read it. I, for one, will never forget Alex, the joy she found in the world in the short time she was here and the courage she mustered in the face of CF. The book is heartbreaking, yes, but it is a timeless story about love and loss, hope and courage. I will add that much has changed in 34 years. Today, through the efforts of the CF Foundation and legions of dedicated CF supporters and parents like Deford, the median age of survival for CF is about 38. During Alex’s life, there was little chance she would live through her teens.

I gave this post the title “7 questions with,” but to be accurate, I threw seven groups of questions at Deford along the lines of a theme. There’s just too much I wanted to know. Here’s my Q&A with Deford:

1. Something you mentioned that stuck with me is your emphasis on asking “Why” in situations at any hospital or clinic. You also emphasized how important it is to remain vigilant and watchful as a parent. You gave a terrible scenario in which your daughter’s lung collapsed, and a young doctor refused to listen to her, putting her in great danger for hours.

For journalists, demanding to know “Why,” feels somewhat natural (though I was way out of my element when Eli was taken into surgery and had trouble with it at first). For the average person not used to questioning authority, it’s even harder.

Can you emphasize again — Why ask the doctor why? Do you feel it is still relevant today, so many years after your daughter’s passing?

A: I think all of us are intimidated by doctors, for our care is in their hands, and so few of us really understand medicine. That makes it very important to ask questions, to probe, to let the doctor know that we are paying attention. The good ones will appreciate your curiosity and are delighted to answer you. The not-so-good ones deserve to be held to account.

2. Q: Alex always prayed to help the less fortunate. With the adoption of your daughter Scarlet after Alex’s death,Alex got her prayer, to help a child living under hard circumstances find a loving home. Alex hasn’t yet gotten her wish, which was to find a cure for CF.

How can we help Alex get her wish? (I am determined to make this wish come true, too).

A: Simple: by volunteering and contributing to the CF Foundation. When the cure comes, I’m sure that’s where it’ll come from.

3. Of course, after reading the book, I was curious as to how Scarlet and Christian were doing and saw she was married in 2009. (The Defords adopted Scarlet after Alex’s death). You have said Alex’s death was particularly hard on Christian. What is Scarlet up to these days? How about your son? How about Carol (Deford’s wife)?

Yes, Scarlet, was married in 2009 but divorced last year. She’s living in Brooklyn now, where she designs jewelry and scarves.

Obviously, the death of his only sibling scarred Christian’s childhood, but he learned so much in the tragic process. I think that’s part of the reason why he’s such a good father to his own two children, Annabel and Hunter.

Carol and I now live in New York and Key West, and we’ll be married for 49 years in August.

4. Q: Has grief for your daughter Alex changed over the years, and if so, how?

A: Grief softens over time, but there is always some that stays with you. And so too do the wonderful memories of Alex.

5. Q: Have you ever worried that Alex would be too associated with the tragedy of her death?

A: Actually, I find that most people find Alex as a symbol of strength and courage. I continue to meet people, 34 years after her death, who go out of their way to tell me that she influenced their lives for the good.

6. Q: As you mention in your book, families can be pulled apart by this disease. High divorce rates. Alcoholism. Depression — all of it. Yet, your family remained close and strong. What advice would you give to other families dealing with cystic fibrosis?

A: I’d be presumptuous to answer that. Some things that work out cannot readily be explained, and they don’t necessarily have answers that apply to similar situations.

7. If, somehow, blogging existed in the ’70s through 1980, do you think you would you have tried it out? Do you still keep journals, and if so, is that what you prefer to document personal experience?

A: No, I’d still prefer to have written a book about Alex. As a matter of fact, the only journal I ever kept was the one about Alex and Christian in those few years of her life.

Thanks Mr. Deford. We want a cure, too. It will happen! -Eli and crew

Thanks Mr. Deford. We want a cure, too. It will happen! -Eli and crew

Thanks for reading. If you like Mr. Deford, check out his latest novel, Over Time My Life as a Sportswriter.

Alex: The Life of a Child is available, too, of course.


5 thoughts on “7 questions about cystic fibrosis with writer, NPR commentator Frank Deford

  1. RC says:

    Thank you for posting this. I’ve always been curious about what happened to the Deford family. Alex’s story has stayed with me ever since I was a child, and was a big part of why I eventually had DNA testing for the most common inherited conditions (and what do you know, turns out I carry CF – no kids yet, but that’s valuable information for the future). What a wonderful response form him. This was great.


    1. j&m says:

      Thank you for reading!

      Liked by 1 person

  2. Thanks so much for this post! I always wondered if they were still married, as in the book he says the divorce rate is high for families with children who die of genetic diseases.
    Also, I finally know who Scarlett is, who he dedicated the book to!

    So glad the life expectancy is already much longer!


    1. j&m says:

      Thanks. Things are really improving. We’re very hopeful!


  3. Tammie Rico-Hamby says:

    I read Mr. Deford’s book when I was a teenager, a few years after it came out. Nothing had moved me so much at the time, nor has anything since. Sixteen years later when I gave birth to my first child, a girl, I named her after Alex. I have read that many people have named their daughters after Alex, so I am by no means the first, but I feel proud that I am one of many. To me, there was not a greater honor to bestow upon my child.

    Liked by 1 person

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