Friday, May 16, 2014

Thankful Friday: Family

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 friends that are like family. Mckenna and I flew to SC to visit some family friends, the Giblins. My parents have been here a week and Ronnie, Mckenna and I were set to meet them for a long weekend. Ronnie ended up in the hole, so he didn’t join us, but Mckenna and I came anyways. It is such a blessing to have family friends that really are like part of the family. They are like another set of parents to Ronnie and I and we couldn’t be more thankful for their friendship.

I’m thankful for a change of scenery. Mckenna had a rough few days at the beginning of the week. I think she may feel Ronnie being gone and just how long he’s been gone this stay (I’ll write another whole blog about that). Anyways, she was a PILL! Thankfully, I think heading to SC was exactly what she needed to get out of her funk. A change of pace has been good for both of us.

I’m thankful for friends who are always there. As I mentioned, Mckenna was having a rough few days. She was clingy, nervous about me leaving her sight, but a pill when with me. On Tuesday, I had committed to take my brother to his follow up appointment for his leg, but Mckenna had to go to swimming, so her sitter (who she usually LOVES) came to watch her. Well it was not pretty. Mckenna sobbed and insisted on just “sleeping” in her bed alone until I got home. I called my friend, and someone who feels like a second mommy to Mckenna and let her know she may get a call from the sitter. Next thing I knew, I got a text that they were all meeting for gelato, followed by a picture of a perfectly happy Mckenna eating with her bestie. My friend proceeded to take Mckenna home, feed her a yummy dinner, and love on her (and played) until I got there. I am so thankful to have a friend who is always going out of her way to make my life easier, and loved so much by Mckenna.

Ronnie's List:

I'm thankful for a great response in my first week in the Hole. I can't remember the last time my lungs responded so positively after just my first week in the Hole. My FEV1 actually went up 18% and more importantly, I can take a much deeper breath with little to no pain.

I'm thankful for family help. When I'm in the Hole, there are many family members who take on extra responsibilities or tasks to make my life easier. Mandi of course steps up BIG TIME and becomes a single mama while I'm gone which is quite the feat. My mom makes dinner for me almost every night. My brother Grant brings me food and hangs out almost every day. My brother Andrew is housesitting and dog-sitting while Mandi and Mckenna are out of town. CF can definitely be a team sport!!

I'm thankful that I can do almost all of my work from a computer. It takes a lot of pressure off of me getting out of the Hole quickly when I can still take care of my work tasks from my hospital room. Conference calls via the web are easy and email of course works from practically anywhere. I'm also thankful for those I work with be more flexible with me while I'm in here!

What are you thankful for today?

Wednesday, May 14, 2014

The Choices We Make

When I made the decision to come to the hospital, it was not an easy one. The way I was feeling, my energy level, my increased cough, my increased mucus production, my lung pain and my lung function test results all pointed to an easy decision, but it was certainly not so.

Mandi and I had been planning on a trip to South Carolina with my father-in-law and mother-in-law and family friends for months. The tickets had been purchased the schedules rearranged and we were ready to go. That "we" is now just Mandi and Mckenna. They left on a plane for South Carolina this morning.

It's funny as it seems every time there is a decision whether or not to come into the hospital, there is always a balancing act. I have to decide how to weigh the perceived sacrifices with the hopeful
outcomes. And really, the hopeful outcome is the only reason I come into the hospital. If I didn't have that hope that I could and would get better there be no reason for me to be in here. Thankfully I still have that hope, and have never lost it. When I come in for a tune-up, I do get better. I do become the best version of myself. It make take 2 weeks, 3 weeks or more, but it does happen.

So what led to this decision? The easy answer is that my lungs felt beat up. I was unable to exercise like I'm used to. I found myself getting winded after a flight of stairs. It was hard to take a deep breath because of the pain that I experienced each time. With me, it becomes a vicious cycle. Less than effective workouts contribute to more mucus buildup which contributes to more inflammation which contributes to a harder time breathing. It's up to me to break that cycle. Sometimes I can do it through increased treatments or increased exercise, but other times it takes the decision to come in for a tuneup.

When I went to clinic and talked it over with the team they thought it was a pretty good idea that I come in. They knew about my looming trip to South Carolina and told me that I would have their full support if I decided to try to hang on and make the trip. We all knew that the decision to come into the hospital would mean that I was choosing not to go to South Carolina but to go into the Hole. It was not an easy decision, but there is no doubt that there was a right one. I had to put my health first.

I don't have many regrets in life, but as it relates to CF, I have one big one. There was a time in my life when health certainly did not come first. My social life came first. My work came first. My girlfriend was my priority. My friends won out over my treatments. Delaying hospital stays to go on vacation was the norm.

And after years and years of making those decisions and putting everything else in front of my health, I am now paying for it.

I have to work so hard now to stay healthy. I have to put in so much time each day to keep my energy at a level that my wife my daughter deserve. So much time is spent doing my treatments or at the gym that I wish it could be spent at the park with my daughter. I now have to miss family vacations to come into the hospital.

If I would've kept my health first, as the first priority in my life, would I have to make the sacrifices now? Of course I do not know the answer for sure, but I'd be willing to bet that I wouldn't have to work so hard now. I wouldn't have to take so much time away from my family when life is really important. I probably wouldn't be missing this trip to South Carolina.

That's the bed I made and now I lay down in it.

So what's the point? If you're reading this and you're struggling with putting your health first, I beg of you, don't make the same mistakes that I did. There will come a time in your life that you will wish you didn't have to work so hard because of choices in the past. When we were younger many of us thought that we were just “living life”. Let me tell you as a man with a wife and a daughter - This is life. I'm now in a life that matters. I have two beautiful girls who count on me to be at my best. That doesn't mean that if you don't have a family in the future you won't be living “the life”. But I promise you that there is something down the road worth sacrificing for. The truth of the matter is you're going to have to work hard now or work hard later, but hard work and sacrifice will happen.

I encourage you to make that sacrifice now, and to work hard now, at the chance that you won't have to work so hard later.

Monday, May 12, 2014

Mandi Monday: Mother's Day Recap

Ronnie is still in the hospital, so Mckenna and I flew solo for Mother's Day...what better way to celebrate being a mom, than, well, spending the day with the little lady that made me a mommy. Here's our day in pictures:

We started the day with breakfast and coffee outside...I ate while Mckenna played with chalk.

Mckenna played and goofed around while I got ready for church.

We went to Fatburger...Mckenna loves hot dogs, and I like not waiting for 35 minutes with everyone else and their moms!

After nap, Mckenna and I went to a peach festival at a local farm to pick peaches. We got water ice there...nothing says peach picking like watermelon water ice...I guess?!

We have a lot of interesting-looking peaches because I just let Mckenna decide what was good...which usually was whatever she could reach.

9lbs of peaches is heavy. Most the peaches at the bottom of the bag are bruised because, well, a toddler drops a 9 lb bag of peaches...every step.

Mommy-Mckenna selfie. Note who's carrying (and eating) the water ice...I really only got it for her for myself. I know I'm not the only mom that does that!

Hayrides too and from where you pick peaches! It was awesome, except all the dust and hay that scratched our corneas the whole time we rode.

"Will you help me? I only two and a half. I can't reach this." Truth.

Some passerby took pity on me as we took a selfie. Thank you, stranger, for your photo-taking.

We ate a lot of peaches.

We also ate a lot of cinnamon roasted cashews...hmm we ate a lot.

We took lots of pictures for Daddy. I love my little ham.

And I finally got a "smile". I'll spare you the other 34839248023 outtakes.

Oh and then Mckenna became a grumpy bus driver. She actually had fun, until she got into the role of a bus driver.

Sunday, May 11, 2014

Happy Mother's Day!

Happy Mother's Day to all the moms out there! I am SO thankful that this passionate, affectionate, smart, fun-loving, outrageous, loving little spark plug made me a mommy!!