Except for last summer, when we had to go to Duke Hospital to see Dylan. Then, for the first time since 2007, he looked more like a patient than the kid down the street. For two weeks, while a team of nurses and doctors poked and tested and treated him for an infection, we were reminded that in spite of looking and acting and generally being like all the other kids, Dylan has cystic fibrosis.
As CF patients go, he's been pretty healthy, according to his mom -- but his parents work hard to keep him that way. Each day, he takes more than 20 pills, three nebulizer treatments and two airway clearances -- and that's when he's well. If he has a lung infection, he can spend up to two hours a day doing breathing treatments. After his two-week hospitalization last summer, he spent another eight weeks at home on IV meds -- that meant no swimming in the pool for all of July and August.
So stop for a minute and imagine your daily routine with your kids.
Think about how full each day is and how often you're running late for school or work in the morning because they can't find their shoes or didn't remember their homework or need you to make an extra snack or are just generally being pissy. And think about how hard it is to get your kids to bed on time because there are always a hundred things, both real and imaginary, that suddenly have to be completed before you can get them to go to sleep.
Then imagine that in the midst of all that everyday chaos, you've also got to work in five different breathing treatments and convince your child to swallow 20 pills. Every. Single. Day.
Now if you're Dylan's mom, you don't complain about any of that. In the 7+ years that I've known her, not once have I heard her complain. Instead, she says things like this:
"That is a lot for a little guy to have to handle and as a mom it is hard to watch him having to endure all he does everyday. Dylan has made me a stronger person. He never gets a day off. I will continue to do all I can to keep him healthy until a cure is found."
On Saturday, my family and I will join with the rest of the Super Dylan Nation in the Cystic Fibrosis Foundation's Great Strides Walk. We will wear our red shirts and wind our way through downtown Raleigh for 3.1 miles. We will marvel at how our little friend with cystic fibrosis can run the whole 5K. We will celebrate all that his family does to keep him healthy.
Need more convincing?
- Five reasons why you should donate to the Super Dylan campaign
- For Super Dylan's Mom
- "The Longest-Lived Survivor"