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.

Comments (10)

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I came across your blog about a month ago, and I have to tell you what an inspiration you are. I have a lung disease called follicular bronchiolitis- I have been tested several times for CF though (all negative!). I have never blogged before, but today I started my own blog and am determined to start running and living a healthier lifestyle. You truly have inspired me to do this. Running isn't easy for me, but here goes nothing!! THANK YOU! http://myhappyhealthylife.wordpress.com/
1 reply · active 667 weeks ago
Thank you so much for taking the time to write this extremely kind comment. I'm so thankful that you stumbled onto this blog and I hope that it can serve as a positive part of your day each and every time you come back. The decision to run and live an overall healthier lifestyle will be the best decision that you'll ever make. Running is hard for everyone, not just those of us who have some screwy airbags! Please let me know if I can help in any way!!!
Fantastic post, Ronnie. I could not agree more with the importance of being proactive and having solid parental support in the early years. Along with the above poster, I too have been inspired to start my own blog thanks to you, Jerry Cahill, Ana, Isa and several others I discovered during May's CF awareness month. The way you are living your life out loud is an inspiration to me. I am so happy knowing there is a young generation being influenced by the positive, proactive, community that you are a part of. Rock on my fibro. http://ContinuallyRefined.com
1 reply · active 667 weeks ago
Thank you my man! So happy that you could discover all the folks you listed above - they are truly legends. I'll continue living my life out loud as long as CF is on the table for even one person. I'll be checking out your blog for sure!!!
Very insightful post! My mom and I were talking about this earlier today saying how glad she was that it clicked with me early on how important it is for ME to take the initiative to do my treatments once I got older and more responsible. Her trick was to pick up the phone and pretend to call the doctor to take me into the hospital... so cruel but it so worked. I hope you enjoyed Boston! I missed the online broadcast but my doc is gonna send me the link to it!
1 reply · active 667 weeks ago
Your momma is a smart lady. I often tell parents to figure out how to when the treatment game by any means necessary. Sounds like she did that!!
Thanks Ronnie. You are such an encouragement to me as that "mean" mom. =) We talk often in our house that treatments are not MORE important than anything else, but they sure take a top priority ! Thank you also for the reminder that CF is different for my daughter. It gives me hope. Somedays we tackle CF head on and delight in trying to kick it down, and other days...it is just hard to think that this is just "the life" that is before us with treatments and medications and the constant burden of illness. Thank you for helping to remind us that as hard as this job is, there is a difference that we are making everyday even if we can't directly see it. =) Blessings-Tiff
1 reply · active 667 weeks ago
You're making a huge difference in the present AND future of your daughter! Keep up the good work and hold firm in the fact that it will all pay off in a healthier, happier and older daughter.
We are just starting this journey with our youngest son. I've found your blog to be inspiring and full of hope. I firmly believe we(his dad and I) will shape his view of this disease. Your post confirms that will help keep us motivated to prioritize his treatments no matter what life has thrown at us that day. I hope he grows up with the same kind of positive, meet life head on attitude you have.
Best wishes for the future,
1 reply · active 666 weeks ago
You as parents will absolutely shape the way he views his disease! I'm glad you realized that early as many parents do not.

Thank you for taking the time to comment and I'm so glad that you can draw something positive from this blog :)

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