Friday, April 20, 2012

Sounds like Dad to me!!!!

Thursday, April 19, 2012

Thankful Thursday: Single Daddyhood

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:

Mandi is out of town at the moment, but I'm sure she's at least just a little bit thankful to get a break from full-time mommy duty :)

Ronnie's List:

I'm thankful for my wife and my baby's momma, and yes, they are the same lady :) This week, Mandi headed out of town for work which left me all alone with Mckenna. I'm on full-time "single daddy" duty for 60 hours, but who's counting? Both of us didn't quite know how this stretch would go since Mckenna is exclusively breast-fed with the ever so occasional bottle when the time calls for it. She is also almost exclusively tended to by her momma at night. Since she feeds twice in the night still, and because she prefers the boob, Mandi is the one that has to interrupt her sleep each and every night to feed out daughter. I have 60 hours of this. She's had 6 months of this. I can't believe how fortunate I am to not only be married to my best friend, and I mean that sincerely, but to be married to such a good and natural momma. She is so caring; she works so hard; She does it all with a smile on her face and with very few complaints. When I say that God created her with me in mind, that may just be the understatement of the year.

I'm thankful that the first 24 hours have gone off without a hitch. Mckenna has eaten extremely well. She's slept like a champ. And she's been overall happy for the first 1/3 of our journey together. We really are so blessed to have such an easy going baby. She's very willing to entertain herself for a while and when it's needed by her daddy, she's very willing to snuggle up in my arms. That's the best of both worlds if you ask me!!

I'm thankful I'm not actually a single parent. Parenting is such a team sport and I'm thankful that I'm not the only one on my team. I could not imagine doing what I've done for the past 24 hours repeatedly (for the most part) for the next 18 days, much less 18 years! I know roles and duties can shift slightly, but to be the sole provider for someone must not only being stressful, but extremely tiring. And I don't know about you guys, but entertaining a baby all day by myself actually gets a bit boring :)

So, what are you thankful for today?

Wednesday, April 18, 2012

Eternal Perspective

Here was the challenge laid down for today's blog:

Open a Book. Choose a book and open it to a random page and point to a phrase. Use that phrase to get you writing today. Free write for 15-20 without stopping.

For the book, I chose the Bible and I landed on Romans 8:18 which says:

"I consider that our present sufferings are not worth comparing with the glory that will be revealed in us"

This verse speaks of eternal perspective to me. Now, I wouldn't describe much of anything I go through on this earth to be suffering, but I know what the author is getting at. Sin causes suffering of all shade, types, sizes and styles. Without sin in the world, I wouldn't feel pain - both physical and emotion - I wouldn't hear or partake in gossip, I'd feel no envy, I wouldn't speak an ill word of anyone, my thoughts would be pure and my actions would be edifying to myself, my God and those around me. Man, that sounds like a great place! Where do I sign-up??

The answer is, that place exists and I signed-up when I gave my life over to Christ. To me, the verse I pointed to above makes it clear that instead of focusing on the toils and troubles of this earth and this life, I should be focusing on the place that I will be spending all of eternity when this pencil dot on the continuum of time, that some people call life, ceases to exist. I actually take great comfort in that.

People ask me all of the time if I'm really this easy going and happy about my current health situation. Some people just can't wrap their heads around the fact that I would call CF a blessing. And yes, there are those that actually get angry that I don't seem to be suffering. I can tell you this - I have never and will never consider anything that happens to my earthly body as a suffering. This is just way to temporary for me to ever consider it that. 

Suffering to me would be spending eternity separated from God. I can't even fathom that. I often sit back and think about this life compared to eternity and it continues to blow my mind. I think if we get caught up in the short-term, and what happens in this life, we'll always have some level of disappointment. I don't think I've ever met someone who was 100% satisfied with how their life is, was and where it's heading.

The only way to be 100% satisfied with this life is to focus on the eternal perspective. The only way not to get overwhelmed with our circumstance is to know that ultimately, the suffering we feel here on earth will be like a gun shot amongst a Fourth of July fireworks show that lasts forever.

I take comfort in the fact that the story has already been written. I'm simply acting out a short scene before the director calls me Backstage.

Tuesday, April 17, 2012

Learned the Hard Way.

There are many things that I have learned the hard way in this life, as I rarely do it the smart or easy way, but for the purpose of this blog, I'll just focus on one.

Many of you know my story so you probably already know where I'm going with this...

What did I learn the hard way?

I learned that if you don't adjust in this CF life; you can die.

Growing up, I was always active and involved in sports. I was also raised by a helicopter mom who was always hovering around making sure I was doing things the right way. This included my treatments. I kid you not, in the 20 years I lived in my mom's house, I did 2 treatment sets a day about 99.5% of the time. With her around, I had no choice. She made it very clear that it was her way or no way. To live in her house, I had to live by her rules and one of the rules was that treatments come before leaving the house in the morning and before going out or going to bed at night. If I wanted her support in any other activity within my life, I had to place my treatments on the non-negotiable list.

It actually worked out pretty well since I knew my mom was the queen of follow-through and if she said it, it for darn sure was going to happen. In fact, it only took me challenging her once, and subsequently being held from football practice, to know that she was serious.

My mom's methods worked wonderfully for the first 20 years of my life. The next 8? Eh, not so much.

What changed though?

I moved out.

When I became solely responsible for my own health and my own treatment regiment, I really screwed up. It's not that I totally abandoned treatments; it wasn't that at all in fact. It was that I failed to adjust.

What exactly do I mean by that?

Well, for starters, I certainly wasn't as active after graduating from high school as I was when in high school and involved in organized sports year round. I also didn't have a set schedule like I did in high school. In college I could pick my classes and I could pick which days and which hours those classes would be held. Needless to say, I rarely had a morning class. With no morning classes, I often had late nights. With late nights, there wasn't always night treatments because I was "too tired" from a night of hanging out aka partying. Sure, I got my morning treatment in almost every single morning, but my night treatment? I was probably batting about .500 on that one. Not good.

This wouldn't have been such a big deal however if I was still as active as I had been. There's nothing real special about the airway clearance we do whether it be hand CPT, vest, pep or otherwise. The whole point is to knock mucus off the walls of our airways and to clear it from our lungs. Sports did that for me for the first 18 years of my life in addition to treatments.

But now, not only am I on my own with my own schedule and my own choices, but I'm not getting those extra treatments on a daily basis that I was getting through sports. Not only that, but now I'm getting up to one less treatment a day because I'm "too busy living life".

If only I would have adjusted. If only I knew then what I know now.

Being active on a daily basis was keeping me alive.

Making my own stupid choices and not being willing to adjust was slowly killing me.

When something was taken away or no longer available that was keeping me so healthy, I needed to be willing to adjust and add additional treatments via the traditional way or through another activity.

But I didn't.

I didn't adjust.

After 52 days in the hospital, I learned the hard way that I should have.

Monday, April 16, 2012

Outrun CF - May 12th

Welp, it's that time of year again...on May 12, 2012 it's time to Outrun CF. As you've maybe seen us post in the past, CysticLife teams up with The Rock CF Foundation a couple times a year to "outrun CF" through a virtual race.

Here's how it works, anyone, anywhere can register for the virtual race. You can run or walk (shoot, you can even crawl or skip or hop if you want) any distance, near where you live (or wherever you'll be on race day).

All registrants receive a t-shirt that is specific to this particular race (each run we have we have a unique shirt designed for). This go around we had a t-shirt design contest, so the shirt is an awesome shirt someone in the community designed (see picture).

Then on May 12th, everyone outruns (or outwalks) CF on the same day, in their shirts. We encourage people to take pictures and post them on our Facebook page!

So the question is, have you registered yet? Don't miss your chance to join us in outrunning CF. Plus, we always have people bummed that they didn't get a shirt when they had the be sure to register so you don't miss your chance to get an awesome tshirt - they're only available by registering!