Gold Star In Sports, Positive Sports News

Frank & Alex: How they helped me through

“I have a good reason for feeling a bond with a man I have never met and have faith in the human being he is, who his daughter helped him become.”

*   *   *

Frank Deford is a sports writer that is best known for his Wednesday mornings on NPR and his presence on HBO’s Real Sports. However, he is not simply a sports writer.  He has written 16 books: From The Old Ball Game to The World’s Tallest Midget: The Best of Frank Deford– and for the most part, he’s written a little bit of everything.

He’s been honored on several occasions for his writing, but one of the most touching things he has written is not only near to his heart, but it’s near to mine.  I am a huge, long-time fan of Frank Deford.  For the man he was, and the man he became after the birth of his daughter, Alex.

I have a good reason for feeling a bond with a man I have never met and have faith in the human being he is, who his daughter helped him become.

I’ll remember that night for the rest of my life.

I will remember it more clearly than anything else I’ve ever been through. I spent the entire two-hour drive home crying over the uncertainty of the future of my newborn child.

My beautiful, perfect, tiny, blonde haired and blue-eyed girl Kristiana had just been diagnosed with cystic fibrosis.

When you find out about something this terrible and haven’t even really been able to enjoy your child because she was sick since birth, it’s a hard thing to swallow.  You have to dig deep.  Accept it.

The doctors told us all of the specifics of what the disease would do to her. Cystic Fibrosis (CF) is a disease that invades the lungs first, by creating a thick sticky mucus that attacks the air sacs of the lungs and doesn’t allow the lungs to get rid of infections.  At the time of my daughter’s birth, the life expectancy of children with CF was unfortunately just 18 years.

The thoughts swam in my head.  “That was the kicker, 18 years? That’s all I’m going to get with my child?  I cannot out live my daughter.” These thoughts were all I could think about.

The doctors also told us to be careful what we read on CF.  Encyclopedias hadn’t been updated with the latest discoveries – and strides were being made in CF research.  At this time, they had just discovered the gene that causes CF and were working on a cure through gene therapy.  The doctors didn’t want us to read ‘bad’ statistics and give up.

For the most part, I didn’t read anything.  The one thing that I did read, I couldn’t put down.

It was written by a very well-respected sports writer.  The story was deeper than anything he had previously written.  It was totally and completely from the heart.  You see, his daughter was born with CF.  Her name was Alex.  And he wrote her life story– all eight years of it.  A tiny life, you might think– but no, it wasn’t tiny.  Alex lived in a very big way.  The book is titled Alex: The Life of a Child.

Frank Deford painted a picture of Alex’s life that was so moving, the words resonate with me even now, years later. You see, Alex was one of those remarkable children that truly left a mark on people’s lives in a way that only her father could communicate.

The one thing that really stood out to me about Alex’s story, was how Deford and his wife let Alex just be a kid. She was an active kid that loved many things, and had several friends that were there for her to support her, but also, just to be her friend so she could feel normal. Her Dad provided her the protection she needed and the freedom to be Alex.

I can relate.  Every time Kristiana hits a bump in the road medically, I want to put her into a bubble and protect her.  It’s hard.

Deford chose to keep Alex alive through her story.  He wrote this book about her life to support others– like myself, and he fought to improve fundraising for CF research. He became the Chairman of the CF Foundation shortly after Alex passed and he led them to wonderful success.

Today, he is still their honorable chairman.

Frank has written many things, but he has never written anything that has made as much of an impact on people’s lives. There have been updated editions of the book over the years because of its popularity and ability to touch people’s lives. Deford still recieves letters from people about Alex and her spirit that still lives on through this book and through his family.

This heart-shattering and gut-wrenching book touched my life. It tore me apart emotionally, and I’d be lying if I said I wasn’t a little torn up about it right now, even. You see, for the most part, my daughter Kristiana has lived a wonderful life. She has lived past 18 and she will be 20 in a couple of weeks.

Since reading Deford’s book, I have taken a different approach to our life.  I realized that I need to let her live.  I have done everything I can to allow her the life that she should have.  My wife and I have done our best to protect her and advocate for her.  We’ve been involved in fundraisers and events.  We let her play basketball and run track.  I coached, of course.  She became a pretty good basketball player and was always active. Her ability to run up and down the basketball court and track has kept her healthy.

We have had a few scares, but she’s a fighter and we’ve gotten through them.  Kids with CF have to have that fight, and willingness to live. They have to have parents that are special and can take the ups and downs of the disease and still remain positive.  However, they also have to also be willing to accept the disease, as it’s not easy.  Through his book, Deford was able to prepare me for this.  And so many others, I’m sure.

Deford is a very positive man, but I’m sure that he’s suffered over the years. He lost his little girl to this disease.  However, as I’ve illustrated, he didn’t give in and let the disease win, he has literally continued fighting it.  He has made strides; life expectancy has risen dramatically since he’s been involved. It would have been easy to close up and walk away from his profession after losing Alex, but he didn’t. He fought.  He used his God-given talents to continue to fight for his daughter, even after her passing, and he’s still fighting, to conquer this terrible disease that took his beautiful little girl all those years ago.

Thank you Frank Deford, for being the man you are, and the father to Alex you were, and for continuing on with the fight that has helped to improve the quality of life in so many children. Especially mine; Kristiana Nicole will be 20 soon and knows Alex’s story and your fight against CF.

I do have a good reason for feeling a bond with Frank Deford.  Well, two reasons.

Our daughters.

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Copyright © 2011 The Good in Sports, Inc. All rights reserved.

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About Chris H.

Married for 21 years, father of three, daughter 29 and respiratory specialist, Daughter 20 in college,has cystic fibrosis and a future Agent and PR person for a professional team, and son thats 19 in college and future great youth minister. love the Buckeyes, and have been officiating high school football and basketball for 8 years. I am also a Reds, Bengals and Indians fan. I have been an usher at THE Ohio State University football home games.

Discussion

16 thoughts on “Frank & Alex: How they helped me through

  1. Awesome article my husband. Beautiful words for a beautiful daughter. If anyone out there hasn’t read this book you should take the time to. For a father to be able to put into words the life his daughter had the way Frank did is completely amazing. Trust me you will cry. It touches your heart

    Posted by Jackie (Kristianas mom) | July 26, 2011, 10:51 pm
  2. Totally agree, Jackie. Great story!

    Posted by JC | July 26, 2011, 10:52 pm
  3. As a country we have too few Frank Deford’s. A long time ago, I learned that I could not keep what I would not give away. This is what was meant. A great post and a tribute to a marvelous journalist in the mold of Murrow. A great personal story shared by a good man and a good woman.

    I really like this post.

    Posted by Ernie Nackord | July 27, 2011, 12:26 am
  4. Awesome Heartfelt article! You all are 1 of a kind… I can’t imagine having to deal with this in a child but I know what it’s like to battle a rare disease! I have a rare kidney disease myself and I fight to stay healthy everyday of my life. The best part about being to cope with it is having someone in your corner to help push you through the hard times! It’s called “Adversity”… You really never know the true meaning till it hits someone in the right spot “your Heart”!
    God Bless you guys and always know that friends from afar are ALWAYS praying for you all !!! I mean that from the bottom of my heart and soul…

    Posted by Troy Dennis | July 27, 2011, 12:33 pm
  5. I’d like to start by thanking the author of this story. It’s very well written and it stays true to the title throughout.
    As a read, it introduces Frank Deford in a way I never knew him, and I now know there was a strong willed spark that lives on today, by the name of Alex.

    I also am introduced to Kristiana who probably would have lived life in a well-supported but secluded manner, all “for her own good”.

    The author shows me that “for her own good” in many situations, is in actuality a putting up of a fence.
    I can’t say I ever saw it as a plus, the not putting up of a fence, but am now, enlightened.

    I truly enjoyed the writing but moreso the information/feeling/promise.
    There is so much more I’d like to express, but won’t.
    I’ll just say that in the case of my daughter, Dawn, I was just not able to have for very long.
    She was taken so young. To say it crushed me, is so much an understatement.

    The one point of this whole reflection concerning Frank Deford that stands out, is the truth that a life lived, no matter how short, can leave an impression that remains so strong, even (in my case 27 yrs) years later.

    I wish the author, wvabuckeye a most fantastic time preparing that 20th birthday party. You and your wife are a beacon for parents everywhere who are going through issues that are seemingly so negative.
    Your work here, in so few, yet powerful paragraphs, displays how the joy is simply in going with the flow, with a smile, prayers, and few limitations.

    Frank Deford. What a work I never knew you did, and are still doing.
    New found outlook on you friend.

    Thank you for taking the time to write Mr. WvaBuckeye!

    Posted by Mark | July 27, 2011, 2:01 pm
    • I’m speechless. Never thought my words would have such a profound impact. Thank you for your very kind words an enjoy Frank in the way I have. He’s a great human being and I hope to meet him someday. Take care.

      Sent from my Chris Hunt’s iPhone

      Posted by wvabuckeye | July 27, 2011, 2:35 pm
  6. Thanks for the great comment, Mark! Very insightful!

    Posted by JC | July 27, 2011, 2:30 pm
  7. Well written. Awesome job my friend.

    Posted by Greg Baugher | July 27, 2011, 3:26 pm
  8. Beautifully written. CF is such a devastating disease. Keep up the fight my friend.

    Posted by Dale | July 27, 2011, 7:44 pm
  9. This is one of the most heartwarming pieces that I have ever read. I have never had the privilege of reading any of Frank DeFord’s books (but LOVED reading his SI stuff when I was a kid), but I have even more respect for him now than ever.

    Posted by TF | July 27, 2011, 7:51 pm

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