Friday, November 2, 2012

Blog from the road...Literally.

What I'm doing right now I would not suggest to anyone, nor would I recommend it. I'm on my way to the airport and I realized that I hadn't yet written a blog for today. Usually, I'll post a cute video of Mckenna, but much to my surprise we have not taken one lately.

So, I decided to do the next best thing and blog from the road. I'm currently driving down the interstate on my way to the airport.

I did not have the necessary blogger app to write this blog, so that was the first that I took in order to make this happen. After downloading the app onto my iPhone I was off to the races and now here I am talking to my phone while it writes my blog.

Isn't technology amazing? I'm pretty involved with that every day yet I still marvel about how awesomely cool it is. It's funny to think back to the times that we didn't have access to all of this technology. And of course my first thought is, "How the heck did we do anything?"

Let me stress again that what I'm doing is in no way say nor smart. In fact this probably makes me an even bigger idiot than I already am.

So with that said, and the fact that I'm approaching the airport, I'll close with this...


(Hopefully, the image showed up at my blog. I don't see it in the post, but I'm hoping it's there.)

PS - There may be a ton of grammatical and spelling errors in this blog. Please ignore them :)

Thursday, November 1, 2012

Thankful Thursday: Cats & Experts


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 currently thankful for SO MUCH that she's having a hard time paring it down to only three!! I will check back with her later.

Ronnie's List:

I'm thankful for neighborhood cats. There is a cat that goes by the name of Princess Sophie who, at least part time, lives at the park. Now, she for sure has owners who loves her based on the name tag and bell around her neck, but she also loves the park. It's like she waits on her perch for children to be going down the slide to make her way over. She loves just hanging out and getting pet by all of the kids (and parents). 

I'm thankful for new faces. Speaking of Princess Sophie; Mckenna loves her. Her face lights up with a totally different look than it lights up for other things. She gets super giggly and then proceeds chase PS all over the playground. It's amazing what that cat will put up with, but I'm sure she's thinking, like me, that Mckenna's smile is totally worth the "abuse".

I'm thankful for peeps in the CF community that excel at there craft. I had a couple of questions recently regarding a hosting account for a Wordpress site, and who did I turn to? Well Jesse Petersen (aka CFFatboy) of course. The man is basically Mr. Wordpress and he was more than happy (and quick) to answer a few questions. If you need a job done, no matter how big or small, contact Jesse!! (And let him know that I sent you so I can get a HUGE discount from him **wink, wink**)

So, what are you thankful for today?

Wednesday, October 31, 2012

Outrun CF "Gobble Wobble" Virtual Race

I'd like to personally invite all of you to take part in this season's Outrun CF virtual race! CysticLife and the Rock CF Foundation have teamed up to put on this virtual event that ANYONE can participate in no matter WHERE you are! How cool is that?!?!

Here's the skinny -

Step 1 - Click here to register for the virtual race and to get more facts about the event. (You can also check out this blog to get another cyster's perspective on the event)

Step 2 - Spread the word! Share your commitment to the event with family and friends. Encourage them to sign-up and join you on race day.

Step 3 - Start training for the November 22nd virtual race (this can include, but not limited too - walking, jogging, skipping, crawling, eating better, jumping or doing nothing)

Step 4 - Get this awesome t-shirt (below) in the mail. You MUST register by today to be guaranteed your shirt by race day! You'll still receive a shirt if you register after November 1st, it just may not get to you in time for the race.


Step 5 - Get on CysticLife.org and share with the community what you plan to do for the virtual race and encourage others to join. Share your training tips with CL and of course update your profile picture featuring your groovy new shirt!

Step 6 - On race day, November 22nd, throw your t-shirt on and head out the door. Walk, run, jog or skip your selected distance at your selected location. Take LOTS of pictures and post them on the Outrun CF Facebook Fan page (be sure to become a fan if you're not already) and you can also feel free to tag me in them (I love seeing the pics!).

Step 7 - Give yourself a pat on the back and a big bowl of ice cream for a job well done...after your Thanksgiving feast of course!!

**The money raised by this event is evenly split between the Rock CF Foundation and CysticLife Foundation. We both use the money to support our programs that support the CF community**

Sound like fun? 


Tuesday, October 30, 2012

Somehow I Stumbled Upon Her

I was so inspired by Mandi's blog yesterday, that I decided to write a response to her blog...sort of. I'm not going to go into all of the reasons that I think CF is a blessing or the reasons that I don't hate Cystic Fibrosis (since Mandi nailed it), but I am going to heap praise on my wife. My one and only.

I am blessed.


There's no doubt about it, I am one blessed man. From the loving family I was born into, to the loving family I am now leading, I am blessed beyond measure. I often think that it's time to pinch myself, but there is no way that I want to wake up from this dream if that is in fact what is going on. I mean, I sometimes feel guilty. I catch myself saying "What did I do to deserve all of this?". I cannot think of a single reason as to why God would choose to bestow such blessings upon me.

That however, is the good news - it has nothing to do with me. God has blessed me richly because that's His perfect plan. His perfect plan could also have my own little world come crashing down tomorrow. Nobody knows what the future holds but Him. I take comfort in the fact that come feast or famine, it's all part of God's perfect plan.

God created Mandi with me in mind.

There aren't many women out there who could fall in love with a guy like me. My faults are many and my good qualities are few. Add on top of it the very different life that I live, and I'm not exactly what most people would consider a catch. Yet, in spite of all of my downfalls, I stumbled upon a woman who loves every character trait, quirk, struggle, fault, and cell in my being...even the jacked up CF one.

It doesn't stop there. She not only loves everything about me, but she'll even credit my jacked up CF cells with crafting me into the man she fell in love with. As she has put it before; "In a weird way, I'm actually very thankful for your CF". There are not many women out there who have ever breathed those words. Yet, in His perfect plan, I decide to go to the movie June 27th, 2008.

I saw a movie that night with my future wife, the woman God hand-selected for me, and I didn't even know it. I was too busy watching some stupid movie to realize it was the beginning of my very own fairytale.

Mandi's doesn't hate CF + I am CF = Mandi doesn't hate me.

I really feel for the people out there who hate CF. I really, really feel for the kids out there who's parents vocalize how much they hate CF. You know what that says to some kids? That you hate them.

I accepted at a very young age that CF was a part of my life and it wasn't going away. CF was woven into the fabric of my being and in some respect, was just simply who I was. So, if I accepted that, but then was told by my parents that they "hated CF", how could one not see that as hating something about you that is never going away? See how that can work?

Thankfully, Mandi has expressed from very early on in our relationship, that there is nothing she would change about me - not even CF. She doesn't hate it. She loves what it's done for me. She loves what it's done for us. She loves what it will do for our family.

Wanting something to be gone and hating that something are worlds apart where I'm from. I want CF to be gone, but I will never, ever hate it.

The end.


Monday, October 29, 2012

Cystic Fibrosis: The Continual Blessing

I mentioned in last week's Mandi Monday that our pastor gave a great sermon on prayer last Sunday. It was a sermon that reaffirmed some things I already knew, but it was given in a way that brought new perspective on something in my life.

We often say that we are "blessed by CF." We say that we consider CF a blessing in our lives. It's one of those things that is hard to explain; hard to justify. There are many things about CF that I don't consider awesome. I certainly don't love that Ronnie is holed up 3-4 times a day doing treatments when we could use that time doing other things. I don't love the fact that he's away from Mckenna and I for a couple weeks at a time while he's in the hospital. I really don't like the thought of potentially being a young widow. Obviously that's not a certainty, but the possibility of it isn't desirable. I really hate the chance that Mckenna would lose her daddy at some point, before she "should." There are certainly things about CF that don't seem like blessings on the surface. Neither Ronnie, nor myself, would argue that.

But the sermon last week opened my eyes to something. I will admit, I don't have prayer down. I am not the greatest or best when it comes to prayer. I don't always pray the way that I should. I don't always have my prayer life straight. That being said, when our pastor was speaking, I realized EXACTLY what he was talking about. Ronnie and I have it exactly right when it comes to our prayer about CF.

Our pastor simply said this, "We need to stop praying for God to remove us from situations and start praying for God to use us in those situations." That hit home. God's job is not to take away all the struggles in our lives. His job is not to play doctor when it's not according to His will. His job, and ours, is to use us in our struggles and in our circumstances. I don't always remember that in my prayer life, but when it comes to CF, I somehow instinctually applied that principle.

For some reason I never once have prayed for a cure for CF. Not once. In my heart of hearts, I know that's not what God currently has in Ronnie's plan. I know so deep in my being that God is using Ronnie's CF and therefore, I am not going to pray for him to be cured. I will be honest, I'm not always so in-tuned to God's voice that I know exactly what His plan is for us, but this is one area of our lives that I have always known and heard God clearly. Therefore, I have always prayed that God would use us in our situation, not for Him to take us out of this situation.

And in that lies the reason...That is why we think CF is a blessing!

Instead of crying out and asking God to cure Ronnie's CF and having our prayers left unanswered, and us angry, we are praying that God use us in our current situation. As a result, we see God answer our prayers in a big way. Time after time. We see blessing in abundance. God has provided us with great friends, jobs, and situations as a direct result of CF. Day in and day out we are shocked by what God is doing in our lives because of CF. He is pouring out more blessing and fulfillment than any little hurdle CF may put in our path. Our prayer is that He uses CF, not that He removes those hurdles.

It is because of the way we pray about CF that we think CF is blessing.

I have never realized why until last Sunday. It has been a huge learning lesson. My eyes were opened. I need to apply this same principle to other areas of my life. I cannot fathom how much more blessed and overjoyed we can be if we continue to pray in a way that aligns our hearts with His. I need to realize that in all areas of my life God puts me exactly where I need to be today. He wants to use me; He doesn't want to rescue me when it's not according to His plan.

As a result, the prayer I want to pray when it comes to all areas of my life is this: Use me, Lord, and allow me to see the blessings in any circumstance regardless of how they seem on the surface.

In hard times this prayer will be difficult, but I know the blessings that the Creator of the Universe (let that sink in for a moment - the creator of the entire universe) will rain down on me will far outweigh any earthly, "big" challenges I will face in the present.