Saturday, August 4, 2012

Greatness is not...

...some unique strand of DNA.

This is definitely one of the best Nike ads ever.

Friday, August 3, 2012

Dancing Mckenna

She took a little while to warm-up, but she got there.

Thursday, August 2, 2012

Thankful Thursdays: Rashless Bum & Trust

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 my husband and Mckenna's daddy. You don't know what you have til it's gone...that's what they say, right? Well they're RIGHT! I've been a single momma since Monday and holy smokes does it make me miss Ronnie. He does so much for Mckenna and I, and I have trouble doing his jobs around here!

I'm thankful for proactivity. Having Ronnie away is a bummer, but I am so thankful that he's gone. Ronnie does what he knows is best for his health, and therefore for me and Mckenna. Since he goes in as soon as he thinks he's on the decline, it keeps the stays short and keeps him at his best! 

I'm thankful for a rashless bum. Mckenna has a crazy diaper rash going on (thanks to some burning diarrhea...lovely). It has turned the days into constant diaper changing and diaper rash care...not to mention screams come changing time. It's awful. I never gave any thought to the rashless bum she had before, but I am SO thankful for it and I can't wait to have it back! I'll never take her rashless bum for granted again. Any suggestions mom and dads out there? I've even gone total hippy and I'm putting breastmilk on the rash and letting her roam diaperless for periods of time. Any good tips?

Ronnie's List:

I'm thankful for the trust I've established between myself and my doctors. Every time I come into the hospital, it doesn't necessarily mean that I feel extremely sick. It does however mean in the very least that I feel I'm headed down that path because of the inability to do what I need to do at home. 

I'm thankful for a wife who can run the show while I'm in the Hole. While I'm getting tuned up it's all on Mandi to parent and entertain our little monster. It doesn't help that Mckenna is feeling a bit under the weather right now, but nevertheless, Mandi scores a 100 on a scale of 1 to 10 in terms of being a wife and mama and person in general :)

I'm thankful for Dragon Dictate. A couple of years ago Mandi gifted me a program that types out what I say. It's a lifesaver when I have an IV stuck in a precarious place on my arm that prevents me from typing. It also comes in handy when I'm just sick of pounding on the keyboard. In fact, my whole Thankful Thursday was spoken. 

So, what are you thankful for today?

Wednesday, August 1, 2012

My Cystic Fibrosis Mantra

Earlier today, I posted a status update on my Facebook page that has elicited quite a few different emotions. I thought that instead of individually responding to all of the comments on my post I would just write a blog about it instead.

Here was the post, 11 simple words, yet 11 that I find so empowering...

"CF is only as progressive as I allow it to be."

Many of you know my full (CF) story, but some of you may not, so let me give you the highlights as it relates to my mantra.

When I was diagnosed my mom went through all the possible emotions a mother could go through. She was sad. She was mad. She was scared. She was confused.  She reached out for help. The "help" she found was in the form of a support group at the local hospital. She went to that support group one time, and after being bombarded with phrases like “out of our control” “always suffering” “nothing we can do” “I hate this disease” “we are fighting a losing battle” “it feels like I'm just waiting for my son to die” “why would God do this?” and “robbed of a life”, she never went back. That's not the kind of "support" that my mom needed. Those aren't the things that she needed to hear in order to face this CF life head on and give me the very best chance to succeed.

So what turned it around for her? What did she hear that not only changed her perspective, but formed mine?

A doctor once looked her right in her eyes and said, “Ronnie may be somewhat physically disabled his entire life, but if you continue doing what you are doing [Keeping me in a bubble], he'll be mentally disabled as well.”

A 50 something-year-old female CF patient who we happened to get on the same elevator with us on our way to clinic asked my mom where we were going. When my mom responded “cystic fibrosis clinic” this woman told my mom that she had CF as well. She went on to say that she was an avid swimmer and she was convinced that physical activity and exercise was the reason she was still alive. This was at a time when that's scary number that gets thrown around today was in the late teens. So what was her secret?

She said, “You have to be willing to grab the bull by the horns and work harder than this disease each and every day.”

There is no doubt in my mind that these two exchanges shaped the way that my mom not only looked at CF, but the way she then looked at my life. As a result she raised me to be a man of personal responsibility, and empowered me with the belief that what I did each and every day made a difference in my health and subsequently my life. I fully believe it was those two statements that shaped me into the man I am today.

Have I always been perfect? Have I woken up each and every day and wrestled that bull to the ground? No! In fact, I spent a good 8 years doing just the bare minimum to get by. A good 8 years of doing just enough to feel that I was doing “all that I could” in my fight against CF. The doctors wanted me to do two treatments a day, so that's what I did… 50% of the time. The doctors wanted me to continue exercising, so that's what I did… 2 to 3 days a week. So was I giving it my all? Absolutely not! I was doing just enough. I was doing enough so that I could tell them at my clinic that I was doing my treatments. I was doing enough so that I felt I was getting close to the activity level I maintained in high school. I was doing just enough to allow myself to feel that my "just enough" was all that I could give.

I was getting older and that's just what adult CFers do, we get worse. I was told my whole life that CF was a progressive disease, so it made sense to me. It made sense that my lung function declined year-over-year. It made sense that I was spending 90 days the year in the hospital. I saw many of my older CF friends having the same experience, and so I accepted it. I accepted the progression. I accepted getting sicker.

Well, it took me 8 years to realize that my “just enough” and doing “all that I could” wasn't enough. It took me 8 years of seeing my lung function decline, my hospital days increase, and my health worsening to realize that I wasn't doing “all that I could”, I was doing “all that I wanted”. And while my CF was progressing I was all too content to blame my disease. Never once in those 8 years do I remember looking in the mirror and asking myself, “what are you contributing to this decline?” No, I was too quick to throw all of the blame on this progressive disease.

That all changed in March of 2009. I had just spent 52 days in the hospital with 48 of those being with assisted breathing and 5 of those being in the ICU. I saw my lung function decline into the 20s. I was the sickest I had ever been. I never knew the pain that came with nurses coming to the ICU to say goodbye and that they loved me. I'll never forget the feeling of friends saying, “you fought so hard”  in a way that indicated my fight was over. Part of that feeling was guilt because I knew I didn't fight as hard as I could have. I knew that I made choices that were contradictory to living a healthy life. And I knew that if I did get through this, I was going to have to be the fighter that everybody thought I was.

After 10 days of intensive care I managed to blow a 31%. After 52 days in the hospital I blew a 50%. That was the first time I ever looked in the mirror and asked, “Ronnie, what in the heck are you doing?”. This was the first time that I put all the pieces of my life together. This was the first time that I reflected back on the previous 8 years and was able to identify all that I did wrong and right. I was totally comfortable with that. I was comfortable with taking ownership of the actions that I chose and not the actions that CF chose for me.

When I left the hospital that day, a doctor told me to be happy with my 50% lung function. He was surprised that I had recovered to that point and to not be frustrated if they didn't increase anymore. I told him I would get it up to 75%. He told me that I hadn't blown that number since 2003. I told him that I had been doing everything wrong since 2001. He said "good luck". I said "luck has nothing to do with it".

It took some time and it took some incredibly hard work. It took some sacrifice, some tears, some pain, some vomit, some frustration, some sweat and some Mandi, but I did it.

In April of 2011, a full two-years later, I blew a 75%.

This was the first time I realized that CF was only going to be as progressive as I allowed it to be.

And since April of 2011 that's been my mantra.

When I'm running and every fiber in my body tells me to stop I say, “CF is only as progressive as I allow it to be."

When I'm having a great time with friends but I have to duck away for a treatment I say, “CF is only as progressive as I allow it to be."

When I'm away from my best friend and all I want to do is hold her in my arms I say, “CF is only as progressive as I allow it to be."

And when I can only get kisses from my daughter via WebCam I say, “CF is only as progressive as I allow it to be."

So that's my story. That's how I formed my mantra. It may not work for everyone, but it works for me.

It may not even be true, but my truth is in my experience.

So until I know any different, “CF is only as progressive as I allow it to be."

Tuesday, July 31, 2012

Who do you miss?

Monday, July 30, 2012

Short and Sweet

No, I'm not talking about Mckenna...or Ronnie...hehe...I'm talking about my Mandi Monday. As you can maybe guess by the time this blog was posted, it's a bit of a crazy day. Usually I write my blog the day before or first thing in the morning, but things have been a bit nutty around here, so I'm just quickly going to throw some updates into a blog and run onto the next thing.

Mckenna seems to be coming down with a little cold. You know the drill, stuffy sounding, snot trickling, cries more easily, red rimmed eyes. She doesn't have much of a temp (99.5), yet, so hopefully this is just a quick come and go little bug. We will see.

Ronnie's headed in for a tune-up sometime this week (sorry if the cat wasn't out of the bag yet honey). So we are scrambling to get things wrapped up around the house and work for him to be gone. As always, Mckenna and I will split our time between Phoenix and Tucson. I'm totally dreading single-momming it, but I know it's what's best for him and for us, so I'm thankful he is able to go in and get all tuned up. I'm fortunate to have my bro and sister-in-law and brother-in-law close by so I have help. It's a blessing and a curse that Mckenna is just now getting sick. It means maybe that Ronnie will avoid whatever she has, or if he has come into contact with the same thing, he'll get it nipped in the bud really fast.

Other than that, everything is same old same old. Mckenna does have a super cute new trick (yes, we have turned into those "do tricks" parents). When you say to her, "what does a monkey say?" she says "ah ah ah ah" in this breathy, panting sort of way. It is adorable!!!

Welp, that's all I have...lame-o, I know. Since I'm so lame, leave so love and tell me all the awesome things you're doing this week!