Alex: The Life of a Child is THE book about life with cystic fibrosis.

In the world of cystic fibrosis, many read it upon learning about the diagnosis of their child. Some parents hide it from their children, hoping they never find it… others read it with their kids.

It will forever remain THE book about CF.

It is Frank Deford’s timeless book about his daughter’s short battle with CF. Alex lived to be 8 years old, passing in early 1980.

Alex: The Life of a Child is, at its core…. Heartbreaking.

I’ve always known about the book, and its success in becoming a TV movie, but for some reason I had always hesitated to pick it up and read it. Perhaps since it very bluntly lays out the harsh, harsh reality that many of us with CF will face in our lifetimes. Maybe not.

This past May I bought, Alex: The Life of a Child. It was actually a day after Frank Deford passed away. I suddenly felt the urge to read the story.

When the book arrived to my doorstep, however, I couldn’t bring myself to do it. It was like getting slapped in the face with some kind of emotion that I had never felt before… I have no other way to explain it.

After all, it had just been a few years since I was lucky enough to spend some time with Frank. Real Sports aired an episode about the unusual bond that he and my parents share. Frank came to our home and interviewed my parents and I for the episode, and throughout the day we spoke about Alex, his time working in the CF community and, really, just about everything else in between.

Only now, after having read his book, do I realize that much of what he said about Alex was shared in the book too. He spoke about her with such detail and pride. It was amazing.

Once he passed, I knew that I had to read this story, but I couldn’t bring myself to do it. My only regret is not having done so before meeting him.

Earlier this week I finished another book about the First World War. I love reading about great people doing great thing, especially when I’m not feeling well – it’s very motivating. When I put First Over There back on the shelf I saw Alex: The Life of a Child out of the corner of my eye.

It was time.

And so, a few days ago, Alex: The Life of a Child finally came off my book shelf. It suddenly dawned upon me that we are about to enter a new generation of cystic fibrosis care – within the next few years that is. The label, “a childhood disease” will finally be left in the past forever.

I felt, in a way, that I wanted to learn, see and understand what life with cystic fibrosis was like so many years ago.

Alex: The Life of a Child does that…. and so much more. The book is about death, yes. It is about remembrance. It is about coping with an impending tragedy. It is about a father losing a child. It is and it isn’t about hope. It’s about all those things… but mostly it is about life.

Alex: The Life of a Child is about how full a life can be inside only 8 years of living.

I was moved to tears each time Frank talked about the first time Alex was hospitalized, the first time she had a lung bleed, the first time she had to (and hated) using oxygen, the first time she had to take enzymes mixed in applesauce, the first time she couldn’t sleep through the night without coughing, the first time she questioned, “why me?” and ultimately, the first time, towards the end of her life, when she wondered what life would have been like without CF. She said:

“[I’ve wondered] just what it’s like not to have a disease. I’ve often thought about that, Mother. Just what it would be like not to have a disease. I wouldn’t even ask for forever. Just for a day I’d like to wake up one morning, and not have any pain or be sick or anything. Just once to be free.”

I’ve always wondered that.

Decades separate Alex and I, yet we are linked through the experiences that we have shared.

I read most of the book during my IV infusion times over the past week… home infusions, something Alex never had… just after flipping off my Pulmozyme nebulizer… another thing Alex never had… and saw that the monster, that is cystic fibrosis, has persisted through time and space.

Ultimately, though, the part of Alex that shines through every person with CF is her laugh. Her laugh, the cystic fibrosis laugh, will always survive. All of us with the disease know what the laugh is and why it is special. It is a laugh that turns into the most productive cough we have in our arsenal. I could hear Alex’s laugh through Frank’s beautiful writing.

Alex’s laugh, spirit and smile are still living and breathing. They will live forever.

It is her generation of cystic fibrosis patients that have paved the way for us. Someone must always be first into the breach. Alex and the rest of the patients who’ve passed from her generation are the real heroes. We are blessed to have followed in the footsteps of their unconditional love, bravery and courage.

Thank you, Alex.

If you’re imbedded into the CF community as I am, and you haven’t read this book…. please do.