A Story

Once again, my goal to become a better blogger has failed. Over the past few months, several post ideas have come to mind, but I keep filing them away for a day when I have more time.

Time to think. Time to process. Time to lose myself in words.

Well. Here it is. 12:01 AM. I'm sitting here at my computer in an almost quiet house. I hear the soft hum of the computer, the creaks of my house settling into the night, and the occasional car motoring down our street. And...snoring. From two rooms away. But don't tell my husband I told you so.

I want to share a story with you, dear reader. And this story, I must confess, makes me very sad.

A few weeks ago, my husband (the snorer) got up as he usually does and came downstairs to watch the news. As he was enjoying a cup of freshly brewed Folgers, a news story caught his interest. So worthy was this news story, he re-wound the broadcast and recorded it for me (oh, the modern convenience of DVR). He was quite excited to tell me about it when, at the last possible moment, I convinced my brain to get my body out of bed, and I said, with as much enthusiasm as I can muster that early in the morning when my voice doesn't want to work, "Yes! I want to watch that. Thanks for recording it for me."

Later that afternoon, he called home from work to see if I'd watched the 2 minute news clip yet. No. I hadn't. Yes, I wanted to. I'd just been busy with other things (Thing One: 2 1/2  year old Evan and Thing Two: 11 month old Jude).

Finally, after I'd picked Alex, my 8 year old, and a friend of his up from school, and in the midst of after-school chaos, my husband came home from work and cued up the news clip. Alex was searching for a Wii remote and talking to his friend (who was in the next room) about whether or not to play Lego Star Wars or Lego Harry Potter. And then my husband pressed play, and after the first few words, I realized why this clip was so important.

The news story was about a new drug for Cystic Fibrosis that addresses the underlying cause of the disease. Phase 3 trials have been completed with positive results, and as  Robert Beall, the president and CEO of the Cystic Fibrosis Foundation remarked, "This is a big deal."

It was about this time I noticed Alex too had stopped what he was doing and was listening very intently to the story. I glanced at him every other moment, wondering what he was thinking, and wondering to myself if it was ok for him to watch this. In a few seconds, I decided that it was. It was great news. And he was old enough now to understand more about it. In fact, he deserved to know. And then Robin Meade, bless her heart, said this,

"Most people with Cystic Fibrosis do not live past the age of 40."

I froze. And then, I remembered my heart was still beating and had not plummeted straight out of my chest. My eyes met my husband's, and we exchanged the same wide-eyed looks as he mouthed the word, "sorry." But it was not his fault. Then I glanced at Alex. And he seemed...fine. The news clip was over at that point, and he continued searching for the Wii remote and talking to his friend in the next room. My husband got up to attend to someone's need, and I remained, slightly shell-shocked, on the couch. About 30 seconds later, in the middle of readying his found Wii remote, Alex turned to me and said, matter of fact,

"So, I'm gonna die before I'm 40?"

My heart plummeted a second time. I searched my brain for how to respond. Matter of fact though he was, it was still a question. So I stammered out,

"No. We don't know that."

And that was that. I realized, even in my alarmed state, that this moment, what with the impending Lego Star Wars Battle, was not the time for an in-depth discussion. I'd save that for later.

I share this story not to make you sad but to make you aware. For about 10 seconds I was furious with Robin Meade for making my son conscious of his mortality and, according to statistics, his probable cause of death. We'd crossed a line, and we could not go back. How dare she and Headline News say such things on air! Doesn't she realize people with CF might be watching!

And then, in a moment of realization, I forgave Robin Meade and Headline News. After all, she was just doing her job.

Most people know very little, if anything, about Cystic Fibrosis. And while Robin Meade's spin on the statistics might not have been what I wanted my son to hear, people need to know it. They need to know why this new drug is important. They need to know why the CF Foundation raises money for research. They need to know that the average age of people with CF is 38.5, which means YES: many people with CF die before they're 40. And they need to know what daily life is like for people with this disease.

This story is one example. Thanks for allowing me to share. 

One final note: Just 60 years ago, in the 1950's, few people with CF lived to attend elementary school. My son is 8 years old and enjoying his 3rd grade year. His favorite subjects are math and science, and he is an avid reader. He's recently begun learning Karate and likes playing video games with friends.

None of this would be possible without the Cystic Fibrosis Foundation and the millions of dollars and the people who have donated and worked through the years to find new and better treatments for CF. And maybe one day a cure.

Certainly, hope lies in that.




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