The Worm Crawl

Crawling on all fours is so 2011...

Thankful Thursday: Bikes and Boards

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for a moving baby. Mckenna is fully on the move now. She's crawling in and out of rooms, and she's pulling up on every piece of furniture, wall, door, etc. It is incredible to watch. She is so curious. She is so content. She is so proud. And best of all, she is so tough and brave. She falls, and she rarely cries. When she's standing, she sees something she wants and goes for it. Having a little girl so tough and fearless may make for some bumps and bruises when she's a youngster and some big mistakes when she's a teen, but it will serve her well in life. So I'm thankful for a wonderful little girl. I just pray we can protect her some! Ha!

I'm thankful for new bikes. We used to have dinky bikes from Target and Walmart, and let's just say you get what you pay for. We wanted to make sure we rode them enough before investing in nicer bikes. We'll yesterday we both more legit bikes and boy are they awesome. We got a little baby seat for the front and the three of us have already gone on 2 bike rides since 5PM yesterday. Mckenna loves her seat, and we love getting out as a family.

I'm thankful for smoothies. We've been having a smoothie every day for lunch and they are AWESOME! Grab a blender, yogurt, and fruit (fresh and/or frozen) and you will not be sorry!!

Ronnie's List:

I'm thankful for bike rides. Mandi and I recently purchased new bikes after our cheapy bikes from two years ago just couldn't hold up anymore. Considering it would have cost us half of the value of the bike to get it back in working order (not including materials), we decided it would be a wiser decision to invest in bikes that will last longer. Considering we ride bikes almost daily, it seems like a good choice!


I'm thankful for professionals in the CF community that view us as more than a job. I had the pleasure of working and hanging out with a great doctor from Boston this weekend that reenergized my faith in CF doctors. Not that I was losing a ton, but I do hear plenty of bad stories of docs out there. Anyway, Dr. Ahmet U. out in Bean Town is quite an exceptional man. He cares, he's focused and he won't quit until all of his patients outcomes are improved.


In the same light, I'm thankful for the CF Taskforce. I'm blessed to be able to serve on a board at my hospital whose main goal is to make the experiences between the CF community and doctors, nurses and the hospital in general, even better. I feel honored to be able to bring a patient perspective to the table and just hope I'm representing all of my friends well.

So, what are you thankful for today?

There Will NEVER Be a "Perfect Time"

I got cut a bit short on my blog yesterday when Mckenna woke up from her nap, but I wanted to finish up about the themes that were running through my time in Boston. If you don't know why I was in Boston, or what the first major theme was as it relates to being successful in this (CF) life, please check out yesterday's blog.

Another common thread that tied most of us together weekend was the full belief in personal responsibility. I didn't hear people blaming CF. I didn't hear them saying it was "impossible" to get all of their treatments in. I didn't hear them give reason upon reason as to why they would get sick at times, if they knew they weren't doing everything possible that they could do to stay healthy. Instead, what I heard was peeps talking about "controlling what you can control" and "making sure that at the end of the day you could be proud of your effort". And hearing stuff like that was certainly like a sweet symphony in my ears.

I've always been a big believer in personal responsibility. Now, I'll be the first to admit that it hasn't always bled into my CF life, but in everything that didn't have to do with CF, I was never an excuses kind of a guy. There was a time when I fell for the classic CF tricks like "I don't have enough time" and "I can't possibly handle anymore treatments", but fortunately, I was able to see the error of my ways after a very close call and 52 days in the hospital. Since that "little" episode, I have taken up the flaf of personal responsibility in the area of my health as well. I knew after that crazy time in my life that all of the little excuses I was making and all of the tricks I was falling for were going to get me nowhere but dead. And frankly, dead is not where I wanted to be.

The thing is, if we wait around for the perfect time to give our max effort, it's never going to happen. I can still give you plenty of reasons why I can't exercise. I could go on for days about how inconvenient my treatments are. If I waited for a time in which I was not tired to exercise, or free from pain, I'd never see the gym.

Here's a recent example...I took the red-eye flight from Phoenix to Boston. I left Phoenix at 11:45pm and landed in Boston at 7:35am. I maybe slept for three hours on the flight. After arriving at the hotel, I did three things, and in this order:

1. I went to Dunkin Donuts to get some coffee
2. I did a treatment set
3. I went for a run

Now, was I tired? Yes. Was I not feeling on top of the world as a result of the flight? Yes. Did I want to run? Nope. There wasn't anything in me that wanted to run. So why did I do it? Because the days that I run, I feel better. Because I didn't run the day before. Because I said that I would when I left Phoenix. Because I want to live and live well. Because nobody else can run for me.

Point is, we often do things that we don't want to do. The thing is, it's doing everything to take care of ourselves that will put us into position to do more things that we want to do and do them well. With better health can come better life. I didn't fully believe that in the past. I thought I was having the time of my life back in the day, but little did I know that that life was slowly killing me. Now, with a refocus on health and personal responsibility, it feels like I'm living more than I ever have - and it feels great!! 

What about you? Are you doing everything you can do to put yourself in the best position to succeed each and every day?

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.

Happy Fatherless Day

Well that title just sounds depressing, but I promise this is a happy post! Ha! I don't have some crazy daddy issues that I am going to lay out here or anything. In fact, I have one of the best fathers on the face of this earth!! My dad set a perfect example for the man I needed to marry, and honestly, I kinda married my father in a lot of ways - scary! My dad is a man of incredible character. He has excelled in his career, but he has excelled even more at home with us kids. He's had to juggle a lot with work and being a great dad, but he did it so well. And now I have the joy of watching him as a grandad, or Papi, as we are calling him.

I have also acquired two new dads. Ronnie's dad and stepdad are great men who I love dearly. The fun part is that they are both different from my dad, so I get to have 3 unique dads! All totally awesome in their own ways!

But anywhoo, back to my original post...I'm getting sidetracked, which generally happens and my stories go on wayyy longer than they need to. In fact, this is a weakness my dad tried to work on with me from the time I started talking. He lovingly (and I'm sure deep down annoyed) would encourage me to cut to the chase. But again, I'm getting sidetracked...

So "fatherless day?" you ask. Yes, fatherless. Yesterday, Ronnie's first father's day, he was out of town, in Boston, to speak at an event. I was hoping he wouldn't realize it was father's day and when he got back say, "surprise!" and celebrate it today. But that didn't happen. He mentioned it on Saturday on the phone. He followed, "tomorrow's father's day," with "I got a bit choked up when I realize." "AW I'M SORRY," I said. "I'm totally messing with you. I'd be sad if she knew what was going on," he said. Ha! I love my practical husband!! But never-the-less I felt a bit bad that he was going to miss his first father's day. So I set out to do something sweet for him.

I found an idea online where you take a picture of your kid(s) holding the letters D-A-D and then put all the pictures together to spell DAD. So I decided to try it. Silly, silly mom of a spastic, active, 8-month old. Two words: epic FAIL. When she wasn't crawling away, she was barely interested in holding the letters. And when she was holding the letters, she rarely held them that you could actually read them. Mix that with a less than quick to push the picture taking button and you have a total disaster. After 3 separate attempts, I decided whatever we had would have to do and uploaded the photos onto my computer. I soon realized that the backgrounds all should be the same, and unfortunately for me, I didn't do the 3 separate shoots in the same spot. And one of the shoots had all different backgrounds because she kept moving so I'd plop her back down and shoot. So I had several decent photos, but none with the same background. I finally just picked 3 of the best ones with the same background and put it together. I wanted to just be done with it, partly because I wanted to email it to Ronnie yesterday morning and partly because I was so over the whole thing. Here's how it turned out:

Anywhoo, it was probably the best way Ronnie could have spent Father's Day. "Why?" You ask. Because, you see, since he wasn't here and I was on single momma duty, it made me appreciate him that much more. Thank you, honey, for all you do for me and Mckenna. Life is awesome with you around!! Mckenna couldn't have a more loving, special, funny, and fun daddy.