Tuesday, June 19, 2012

A Common Theme

This past weekend I had the privilege of spending some time in Boston after being invited to lead a break-out session and serve on a Q&A panel. My cyster in Boston, Beth Peters, organized the entire event and did an absolutely wonderful job. The theme of the event was the "Power of Two In YOU" and starred both Ana and Isa from the documentary The Power of Two. Which, by the way, if you haven't seen it yet, I would highly recommend finding it on your on-demand cable service and checking it out. It's the only "CF" related movie/documentary I've ever watched, and I'm certainly glad that I did. It does a great job of shining a light on the great need for organ donations both here in America and worldwide. I think what I most enjoy about the film though is that the overall tone isn't one of despair and anger. Ana and Isa had some very rough times in their CF journey, but never once do you feel like they're a victim. So anyway, if you're up for it, check it out.

**And parents of young ones, just remember that the disease that Ana, Isa, myself and so many of us old-timers faced when we were young is almost a completely different disease than it is today. I mean it when I say "It's a great time to have CF!"**

I also had the opportunity to stay up real late the night before the event (Saturday) and just chat with Ana and Isa. I came away with two thoughts: We're cut from very similar cloths and I like them more every time I get to hang out with them. We of course chatted about CF, our journey and life in general, but we also spoke about what we saw happening in the CF community - both now and in the past. Throughout our entire conversation, two themes seemed to be constantly at the forefront: Personal responsibility and the parents role in our (CF) life.

I know that I stress it quite a bit on this blog, but I can't stress it enough. It will always and it has always started with the parents. Ana, Isa and myself grew up in homes where treatments were done no matter what, rain or shine and without question. There simply wasn't a choice in the matter and we knew it. We also thought our moms were extremely mean at the time, but we all agreed, that without them, we'd be dead. Very few kids will choose to do their treatments. And as parents, if you're waiting for your son or daughter to "take control" of their own health before they leave the house, you may be waiting for a long time. Doing my treatments was a condition for living in my mom's house. She made it very clear from early on that there were certain things I was going to do if I wanted to enjoy having the privilege of being in the home, and at the top of the list was treatments. Now, would she have kicked me out of the house and onto the streets at 8 years old? No, but she did hold a pair of scissors in one hand and the power cord to my Nintendo in the other when I refused to do treatments. In short, she figured out ways to "motivate" me.

Ana and Isa's parents were very similar. They had no choice but to take care of themselves as long as they were under their parent's roof. And as we talked about the community, we all said that when we see other parents take similar approaches - whether or not there is the "mean" component - that we generally see healthy CFers. Bottom line, you parents have one job and one job only as it relates to CF: Do whatever you have to do to make sure that your child does ALL of his or her treatments. Doesn't matter how you get it done, as long as you do.

I was going to write about personal responsibility, but I think that's going to have to wait until tomorrow. Mckenna just got up from her nap, and it's my responsibility to hang with her write now :)

So check back tomorrow about how personal responsibility plays such a major role in the life of an adult CFer.