Five years ago I began a mission running marathons and half marathons to raise money and awareness for cystic fibrosis. I felt helpless. I felt that I wasn’t doing enough for my son, Jacob, in trying to find a cure for CF, and I believed that if I punished my body enough, people would take pity on me and make donations. I soon found that that it didn’t matter so much how many miles I ran, or how many months I woke up at 6 AM to go running — people would make donations out of the goodness of their hearts, because they wanted to help.

I decided to document my journey on a blog. The idea was to keep family and friends informed of not only my training progress, but to keep them up to date on Jacob’s health and to help readers to understand what it is like raising a child with a deadly illness. A longtime Bruce Springsteen fan (Julie would call me a fanatic—I wouldn’t disagree), I chose to call the blog IF I SHOULD FALL BEHIND. The title comes from a 1992 Springsteen song of the same name. To me that song represented the idea that should I stumble or fall, someone would be there to boost me up and set me back on course.

“If I Should Fall Behind” originally appeared on Springsteen’s Lucky Town, an album recorded in a burst of creative energy soon after the birth of his first child. The studio version is a gentle love song with a country flavor: acoustic guitars and drums with minimal keyboards. For the accompanying tour, Springsteen transformed it from its basic roots and turned it into a hymn-like celebration. It was the first of many incarnations the song took until it was fully realized in 1999. In ’92, each time he performed the song, Springsteen began it alone, strumming his electric guitar, placing the focus on the opening verse.

We said we’d walk together baby come what may
That come the twilight should we lose our way
If as we’re walkin’ a hand should slip free
I’ll wait for you
And should I fall behind
Wait for me (more…)

I am running for my son.

That is the mantra I repeated to myself in times of exhaustion when I was training for my first two marathons back in 2003 and 2004. The early morning runs, the aching joints, the self doubt, all of these things played a factor in wearing me down and making me want to quit. But then I would repeat those six words to myself and I would find some buried reservoir of energy and continue moving forward.

I am running for my son.

The reason behind my sudden urge to run a marathon was raising money to find a cure for cystic fibrosis, the deadly disease that Jacob was diagnosed with when he was barely a month old. Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene causes the body to produce thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections, and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. To combat the disease, Jacob must do daily breathing treatment with a nebulizer and a machine called “The Vest,” which vibrates his chest to break up any mucus build up in his lungs.

Additionally, he must take enzyme supplements to help him digest food. Jacob takes a total of 13 different medications daily to keep him a healthy little boy who loves to play with his older sister, Sophie.

After a two-year hiatus, a simple jog through a rain-soaked parking lot last Thanksgiving lit a spark in me to begin running again. Between 2003 and 2006, over $20,000 was raised for the Cystic Fibrosis Foundation through the marathon fundraisers I ran. The time felt right to make another go at it. New shoes were bought, a slow steady regime was adopted, and on November 16, I will participate in the Pasadena half marathon, just two days after Jacob’s 7th birthday.

This past summer, we visited family in Ohio and I stuck with my training as best as possible. The very first morning, as I cut a path through the memories of my childhood jogging through the neighborhoods where I grew up, an epiphany hit me. I vividly recall a Coldplay song chiming through my headphones and I had a clear vision of the future. Jacob and his loving sister, Sophie, were sitting together on a swing, reading, he with his head on her shoulder. They were older, in their teens, and the sun was setting behind them. In this vision, I stood, observing, feeling blessed for the wonderful life I have and the beautiful family I love. And it occurred to me, suddenly, that I am not just running for my son.

I am running for my family. (more…)

The call came in the middle of the workday, sometime after lunch. Julie was fighting back tears as she drove home from Jacob’s pediatrician’s office. What we had feared was confirmed: Jacob’s failure to thrive at one month old was because he was born with cystic fibrosis (CF). Here is the definition of CF from the Cystic Fibrosis Foundation:

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections, and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

We were vaguely familiar with some of the CF facts after we brought Jacob home from the UCLA medical center. One of his doctors there had mentioned, in passing, that a CF test had been done, but for some reason it hadn’t. Immediately, we did some initial research on the disease, but not too much. Our son was home and out of intensive care — that was what mattered. “Everything’s fine,” we thought. But obviously it wasn’t. When Jacob failed to gain weight and his color continued to be very pale, our pediatrician became concerned. A wonderful, caring man, he wanted to rule out CF after we mentioned what the UCLA doctor had told us when he ordered a blood test.

I should’ve been there. That’s what I was thinking as I hung up the phone. I should’ve been there with Julie and Jacob when the test results were given. But I didn’t believe it was cystic fibrosis. I was optimistic it was a virus or something easily treatable. I should’ve been there.

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