Week 273: Meet a hero

You know what's great after a lot of traveling? Not traveling. Doing laundry and putting your clean clothes in the dresser rather than back in the suitcase. Being able to honestly respond "Nope!" when your 3-year-old asks, "Mama, are you going on another trip?" 

One really nice thing that I was able to do here at home was to attend our annual CF Family Education Day on Saturday. I always love the chance to catch up with the other families, the people who know exactly what my life is really like and that I never see, even though we live in the same state. It's great to hear in person how everyone's kids are doing, and swap tips, advice, and tears. As an added bonus, we got to taste free samples of the new s'mores flavor of Pediasure. Verdict: pure nast, kind of like a liquid PowerBar. But, some kids love it, apparently.

Another great feature of the day was the opportunity to meet an adult with CF. This year's speaker was a man from WI who is in his mid 30's, married, works as a phys ed teacher and basketball coach, and is 6'1", 195lb (!!!). He had an incredibly positive outlook on life and it was so wonderful to see a real-life example of what could be possible for Lemon. 

Perhaps the highlight this year was the chance to meet Robert Beall, the former president and CEO of the CF Foundation. He was with the foundation for an incredible 35 years, retiring in 2015. One of the things he brought with him to set the stage was a sort of medical manual about CF that was published in 1965. Suffice it to say, the picture then was unbelievably grim, and the photos of the children in the book were absolutely heartbreaking. 

But, there were a group of desperate and committed parents who wanted to push things forward. They started incredibly small, with a single research grant of $10,000. When Dr. Beall joined the foundation, things were incrementally less grim than in 1965, but not much. Most kids with CF didn't make it past 10 years of age. The amount of change that has happened since that time (in no small part thanks to Beall's leadership) is staggering. To see Dr. Beall, who is now an older guy (and not very tall) be absolutely dwarfed by an adult man with CF, when there were no such people alive at the time Dr. Beall joined CFF, is so moving and gives me so much hope for Lemon's future. I feel very fortunate to have had the chance to see Dr. Beall in person and to shake his hand, given that he is now retired and doesn't travel much anymore. A true once-in-a-lifetime opportunity, and I was glad to be in town to take advantage of it.