Adjustment After the Hospital

Ronnie posted yesterday that he’s home…YIPPEE. He has been home a week, and we are all adjusting to him being home. I know it sounds a little silly, we LOVE when he comes home and are all so happy to have him back, but there is always an adjustment period for all of us that can feel a little hairy.

There’s an obvious adjustment for Ronnie. He has just spent 3 weeks in the “quietness” of his hospital room. There are very little demands of his attention and time. He can sleep when he wants (kind of…I know nurses and PCTs like to come in at 2AM to do stuff they could do in the middle of the day…just because they don’t use their brains. HA!) He only has to worry about himself and getting better most of the day, everyday. He can eat when he wants to eat. He can sleep in. He can stay up late if he wants because he can sleep in. But when he comes home he has to hit the ground running. There are kids yelling and hanging on him. There’s a wife talking his ear off and expecting a partner to take on 50% of the household chores…and more than that, there’s a wife that wants to leave the kids with him and run out the door for her own little “quietness” after 3 weeks home alone. To say there’s a bit of an adjustment needed is the understatement of the century.

The kids and I have to adjust too. By the time he comes home, our days and routines have hit a new groove that works for the three of us. I’m used to being a single mom. Our morning routine looks a certain way. Our nap time and bedtime routines look a certain way. Our schedule fits what works for the 3 of us vs. factoring in Ronnie’s schedule as well. My evenings look different. I shut down post bedtime and retreat to my room to watch TV and crash early. All of that needs to shift again back to the old routine, or at least an updated version of the old routine (we sometimes use this time as an opportunity to reboot our routines).

The kids have to adjust in their own way too. They are no longer the center of attention like they were before. They now have to share my attention at home, in the car, etc. with Ronnie. For Mckenna this can be hard. Keni is our little talker. She talks non-stop. When daddy is gone, mommy almost always has an ear to listen. When daddy comes back, she has competition for my ears. When it’s just me at home, I plan our days to include stuff that is very kid-centered a lot of the day. Once Ronnie is home, it’s back to a more healthy balance. She also is very excited to see Ronnie, but has to share his attention with me and Bennett. It’s a tough adjustment for her.

With all that said, we are so thankful to have him home. It makes life so much more awesome. My mom said it best when I told her we were having to “adjust to Ronnie being home”. She responded, “nice to have to adjust.” Amen to that! Nice indeed!

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?

Are You Honest With How You Feel??

Question from reader

I love when I get questions from the community and I always hope that my answer can help more than just the person asking the question. We all seem to undergo similar experiences in this life and I figure it can never hurt to share my own personal life experiences. 

Question:

I am meeting lots of new people who don't know anything about CF, or what that means in my daily life. I am very comfortable talking about what CF is and how it effects me, but I don't know how honest to be, and how best to explain it to people who don't know me well. To look at me you would never know (unless you saw me sick) that there is something "wrong" with me, so I find when I try to explain it, it's almost as if people don't quite believe me, or think I'm being overly dramatic about the time I put into breathing treatments, or how sick I can get. I don't know how to explain to my jogging buddy that I ran 2 miles with at 6:00am (feeling junky but not too bad) that by 9:00pm that same day, I was coughing up blood and had a fever of 104. I don't know what to say to a new mommy friend that I canceled a playdate with on Monday because I wasn't feeling well, that by Wednesday I had a PICC in and am now doing a full course of IV antibiotics. She, being a kind person, texted today (Friday) to see if I'm feeling all better, and the truthful answer is no. No I don't feel better, I actually feel worse. I can barely carry my baby up the stairs because it's that hard to breath. I'm exhausted because I've spent 2 whole days in and out of the hospital and hours in waiting rooms. But saying things like that freaks people out, and then they don't know what to say. However, pretending things are fine when they aren't isn't exactly a good option either for any kind of lasting friendship.

So how do you handle it? Where is the sweet spot between complete honesty, and pat answers like, "I'm getting better!"?

Answer:

The answer to your question is a tough one (as if you didn't already know that).

For me, I've rarely been totally flat out about how I feel with my friends and family. If I were to say "not great" or "pretty bad" I would always follow it up with "but I'll be alright" or "I just have to keep pushing". I've never wanted to put an unneeded burden on someone who really can't do anything to make me feel better. Sure they care, but they can't actually heal my lungs, do my medication for me or take my place in the hospital. I'm the only one that can do those things, so I've always internalized a lot of those different "I feel like crap" feelings.

In times that I feel helpless, I don't want to cause those around me to feel helpless as well.

Even with my now wife, I was very honest about what CF was, how it affects my body and what it could all potentially look like in the future, but I always quickly followed that up by, "but I'll work hard to make sure I'm always living the dream!".

Think about this too, will anybody around you ever really "get it" no matter what you say or how you say it? Probably not. The only people that could get it are others with CF or maybe other chronic illnesses. For me, I'd rather others in my life see me for my perseverance, positive attitude and faith in Jesus - than for something they will never be able to truly grasp.

Response: 

Thanks so much for getting back to me so quickly! That does help, and I think you are absolutely right. Thank you for affirming that for me, and for the encouragement to be positive. I am generally a very positive person, but this go 'round has been a little rough. I know you are right and so I will keep on, keeping on!

If, as a reader, you ever have a question for me, please never hesitate to send it along. You can send it via CysticLife, Facebook or my email address (ronnie@cysticlife.org)!

How Could I Choose NOT to Exercise?

One thing about exercise...it usually sucks while you're doing it.

I know I can attest to how sucky it can be. It doesn't matter if I'm running, lifting weights, biking, hiking, doing a class or an array of other activities, the "present" usually stinks. I don't know about you, but when I exercise, I experience the following:

Pain from sore muscles
Pain from stiff joints
Some type of back pain
Light headedness
Eye stings from sweat
Shortness of breath
Coughing my head off
and the list goes on...

So as you see, I don't enjoy exercise. Well, let me back up. I certainly don't enjoy exercise while I'm exercising.

I've been on the record many times about two things regarding exercise, I only do it because I love my wife and daughter and, there is NO DOUBT that it's the best thing for my health. When I'm healthier I'm a better husband and father. On the days that not a bone in my body feels like going to the gym, I figuratively, and sometimes literally, slap myself across the face and say "it's not about you!".

See, my present (both from God and in time) is what inspires me to exercise, but it's my past and future that I often think about when I'm in the trenches. When my energy is zapped and I feel like I can't push anymore and when the pain feels like it has blown past my threshold, I often think about how good I'll feel when I'm done and how terrible I feel when I'm not committed to a life of exercise. The great thing about an exercise "high" is that it often lasts all day. Sure, you're maybe a bit tired. A slight worn out feeling. But I assure you the benefits of exercise are working even when you're not. I don't know about you, but when I exercise, I experience the following:

More energy throughout the day
Better sleep at night
More mucus production through out the day
Less viscous mucus
Ability to take deeper, fuller breaths
A sense of accomplishment
Increased appetite
Better "overall" feeling
Pride in myself
Honor (keeping a promise to my wife and daughter)
Better body image
More focus on other tasks throughout the day
and the list goes on...

Now, looking at the two lists, how could I choose not to exercise?

Hemoptysis Episode and Children

Question:

I posted some questions on your blog a few weeks ago about how you manage having a baby with all the CF stuff. Thanks again for your response. : )

Here's another question: are you ever concerned about Mckenna's safety or your safety if you have a hemoptysis episode? For instance, if you were alone with her and you had a bad bleed? I have had periodic hemoptysis for nearly 20 years and had an embolization last year, but I still have random bleeds. For instance, last night I coughed up 1/4 cup, but I have no other symptoms of being sick right now. My husband and I have been discussing adopting a baby, but that does seem like a pretty big concern to me.

In addition, here's one more question. Do you feel safe traveling internationally if you are prone to bleeding? I have a lot of anxiety about it and don't really go anywhere too exotic for fear of an emergency. I saw that you went to Singapore, so I was wondering how you made that work.

If you could shed some light on how you deal with this scary and frustrating CF problem, I would really appreciate it. : )

.....

Answer:

I hope your Christmas season was a good one and that you are enjoying the new year thus far :)

To be honest, I've never been very concerned about having a massive hemoptysis and being alone with Mckenna. If it happens, it happens. There is always a neighbor or 911.

Bleeding on a flight is always a slight concern, but I do my best to avoid sudden movements as to control the already increased pressure in my lungs and I sit in the aisle. I used to prefer the window, but now I like access to the bathroom if and when I have a bleed. 

Most places have decent enough healthcare if you were to have an emergency. Singapore has top notch healthcare. I've also however spent a lot of time in China and they have no clue what CF is :)

Here's probably the best way to answer your question - I don't let my health dictate what I do or do not do. If I want to do something, I put myself in the best position to succeed, and I do it. I'm not going to let the chance of having a massive hemoptysis stop me from spending time alone with my daughter, or pursuing a family in the first place. I won't let the possibility of a bleed prevent me from seeing some of the most beautiful places in the world.

As long as I'm putting myself in the best position to succeed and working my butt off every day to be healthy, I'll reward myself with life!! :)

Hope that helps.

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.

Morning Ride to Starbucks

Mandi and I take a family bike ride every morning around 6:45am. It's a great way to get the blood pumping and the muscles warmed up for the day ahead. It's also a nice way to "beat the heat" and enjoy some gorgeous summer mornings. (As a bonus, it makes for some good mucus clearance)

This morning, we decided to take a family ride to Starbucks.

Obviously pretty pumped for the bike ride this morning :)

Look both ways.

Hey, I know you!!

Dazed and Confused.

She insisted on waving at anyone who entered or exited the building.

Not sure what she's pointing at here, but I assure you that it's cool.

I'm no photog, but I like this shot...minus the parking lot.

...and she likes straws.

When's another bike ride?

After a kissy,

more straw chewing,

and a little paper playing!

 Now we're ready. Let's go!!

Ever Question Having a Family?

Another great question by a reader....

I saw that you have a child, did your CF ever make you question having a family? My boyfriend and I have open discussions about how we feel about marriage and kids, etc. but i recently opened my mouth asking how he feels due to the fact that he has CF-which was probably not the smartest move on my part. his outlook on the future has changed ever since we talked about that.

First thing we did after getting married was get my wife tested to see wether or not she was a carrier of the CF gene. Thankfully she was not, so we were able to pursue a family using IVF.

Did I ever question having a child? Not really. I was created to be a Daddy. Can something go terribly wrong with me and end up having a negative impact on my daughter? Sure. But I can promise you and anyone else I know that I will continue to work my butt off each and everyday to ensure that doesn't happen. Starting a family put my health into focus even more than it already was.

I can totally understand your BF reaction. I'm guessing that he felt "less of a man" after that conversation. As men, we want our partners to be 100% confident in our ability to take care of the family. I'm sure you also made him feel mortal in a time he may have felt immortal. I'm glad you guys are having the conversation though as it is a very important one to have.

I'll leave you with this...When my now wife and I were dating we were taking about the future and marriage. She captured my heart when she said, "I just want you to know that I'd be strong enough to be a young widow. I know we both will make sure that doesn't happen, but if it does, I can handle it."

I know that's a little deep, but sometimes the best of relationships are formed out of conversations like that :)

This Weekend: News and Notes

Just a collection of the happenings from this past weekend, the last of such in August 2012....

You probably noticed that there was no Mandi Monday yesterday. Mandi was knee deep in travel and didn't get in until yesterday from her trip to Lancaster, PA. Her grandpa was admitted to the hospital for a pretty gnarly case of pneumonia. The admit was sudden, and grandpa was unprepared. With no family close by, he was alone with his thoughts and a hospital gown. That of course didn't sit well with the family, so Mandi and her brother Josh were able to fly out there on Friday and keep grandpa company. It definitely lifted his spirits and we're so thankful that he is on the up and up!

With Mandi gone, that left me alone on daddy duty this weekend. Fortunately, I did have some helping hands as my step-dad and little brother came up from Tucson. We all had a blast just relaxing together and I was so happy that Mark (step-dad) got to spend some quality time with Mckenna.

We also did some major gardening this weekend. By we, I mean mostly Andrew, Grant and Mark of course. While I was busy with Mckenna, treatments, making meals and working out, they were busy tending to the garden. They turned all of the raised beds and fixed-up some of the square-foot garden portion. After making a run to Lowes on Saturday, we all got up nice and early to "beat the heat" Sunday morning and finish before church.

This fall we're going for - spinach, lettuce, cabbage, broccoli, cauliflower, bush beans, radishes, carrots, summer squash, tomatoes, green onion and kohlrabi. We'll see how it all turns out :)

Our pastor delivered an excellent message on Sunday. He challenged the men of our church to take it upon ourselves and raise a Christ-centered home. It sounds easy enough, but not so much when you start to look where you're priorities lay. The bottom line is that our family becomes centered around what we spend the most time with, or what takes priority over all else - wether that's work, money, sports, working out, school, etc. I felt really convicted and was so thankful to be reminded about the importance of always working my life around Christ; not Christ around my life.

Welp, I thin that just about does it. Hope you liked the update!!

Success In This Life

After 17 days in the Hole, it's good to be home. As many of you know, I don't fight going into the hospital, as I see the forrest through the trees, but that doesn't mean I'd rather be there. Sure, the Hole serves as a place to "get me back on my feet" and find some of the energy that I have lost, but I still miss my family every day like we've spent decades apart.

The hospital is one of those "necessary evils" in life. I use that term loosely as I don't think for one second the Hole is an evil place, but nevertheless, it is necessary for me and it isn't the opposite of evil :)  Fortunately for me, I've always been able to look to the other side of my hospital stays. I tend to be a "live in the moment" kind of a guy, but not in the hospital. In there, I'm looking towards the future and it always looks sunny. I focus on the energy that I'll have when I get out. I'll start making plans for change for when I get home. I know that I'll have more spunk behind the workouts that keep me out of there.

And I think most importantly, the only time I look into the past, is to learn lessons from it and apply it to my present for a better future.

It's not always easy. Not being able to pass Mckenna off to Mandi before she goes "night-night" is gut wrenching. Snuggling with a hospital issued pillow instead of my wife, in a word, sucks. But, I can tell you what would suck even more - Not being here to do either...forever.

I truly believe that the hospital stays put me in the best position to succeed. Success to me in this life is two-fold - LIVING an incredibly active and loving life with my family for as long as possible and raising Mckenna in such a way that her walk with Christ is so strong, that mine pales in comparison. If I can say those two things when God wants me Home, it will undoubtedly be a success.

For me, it's simple. Putting my health as my number 1 priority is the ONLY way I'll find success in this life. Even at times when it calls for me to put my family in a distant second place, I need to stay focused. I need to see the "end game" and not the game. Focusing on the game would make me go crazy in the Hole.

My only chance at success is to focus on my God, my health and my family. The hospital always seems to make the focus more clear and for that I am so, so grateful.

Are You Selfish? I Hope So!!

When most of us think of being selfish, we think of only doing activities or making decisions that benefit us personally. However, I'd like to look at it from another way today - maybe we're being selfish by not putting ourselves first when it comes to our health? Allow me to explain.

Actually, let me back track just a bit and share with you the note that a friend wrote me that spurred on this blog...

"I just wanted to say THANK YOU for the blogs you do. I was reading a lot of them today and it was a real eye opener. By reading them made me realize that its time for me to have "ME" time. I need to do EVERYTHING that I am capable of and control of in order to stay healthy. Thank you Ronnie! :)"

So when you read that, what do you think? Does saying "time for me to have "ME" time" sound selfish to you? I can certainly understand if it does, but to me, this is one of the most selfless statements you can make. Notice what she said after that statement - "in order to stay healthy". That my friends is what this is all about and why many of us need to rethink what is selfish and what is not.

I happen to know that the person who said this has a loving family, a ton of friends and a husband who wants nothing more than the best for his wife. When we have that many great people around us, it's hard not to think that the more time we spend with them, the more we are showing that we love them. But here's the question, and one I would suggest asking your loved ones, is it better to be "around" with your family, or would they rather have you "there"?

I would bet that most families out there would answer this question the same way. It's great to have us around, but man, they absolutely love it when we're actually there, healthy and engaged. 

I used to think I was quite the family man because I was able to spend so much time with my brothers, parents, cousins, aunts, uncles and everybody in between. Heck, I had so much time on my hands that I was also able to always be around friends, poured myself into work, volunteered at church, volunteered at the homeless shelter, went on a few dates, spoke at some fundraising events - it really seemed that I was squeezing everything there was to squeeze out of life.

I was making a big mistake however, all of that "life" was coming at the expense of my health. All of those things I listed came before my treatments on the totem pole of importance. I thought I was showing everyone how much I loved them by always being around and giving them my time, unfortunately, I had little time to love myself.

So given the choice, would my family and friends choose for me to be sick and around or healthy and there? Wish I would have seen it so clearly at the time, but I was being way too selfish by not being selfish - they would MUCH rather have me healthy and there, even if it meant I wasn't there as often.

I hear people say that you have to "want it for you". Nope, you don't. You just have to want it bad enough for someone, wether it's you or not, that you're actually willing to make a change.

That someone for me was and is Mandi. I have become much more selfish with my time since we met, and she wouldn't have it any other way. In fact, she demands it. She knows first hand how things were when I didn't put my health first - it wasn't pretty for her and it wasn't pretty for me.

So I challenge you, start being selfish when it comes to your health and the time you spend on some "me". 

In the end, that "selfish" act may be the most selfless thing that you ever do.

Thankful Thursday: Spontaneity & Oxygen

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 spontaneity. We decided on Thursday last week to go to Florida for the weekend to see my Grammy. So we bought out tickets and were off the next day. We aren't spontaneous like that very often, but I love when we are...especially with Mckenna. I'm hoping we can keep it up. I'm thankful that we're not totally boring...YET!

I'm thankful for family. We got to spend a lot of time with family over the weekend and it was AWESOME!! We all had so much and there's nothing better than fun time with family. We have the best family!

I'm thankful for carpet. My grammy's house has a lot more carpet than ours does, and it sure is nice not having Mckenna crack her on tile...all day long! I think Mckenna is probably thankful for carpet too. Mckenna is pulling up on everything these days, even things that aren't very sturdy, which leads to lots of falls. Plus, she's getting really brave and letting go of things to just stand on her own or to dive for other things. All of it means she's taking lots of falls. 

Ronnie's List:

I'm thankful for an easy going baby. Mckenna seems to just go with the flow despite what situation we put her in. She's certainly not a bump on the log, but she also seems to be pretty happy no matter what. I love that we can get her to smile at the drop of a dime...or anything that makes noise really :)


I'm thankful for the decision to sleep with oxygen. It's been quite awhile that I've been sleeping with the stuff, but there still are times that I can't sleep with it. On short trips, I never bring the oxygen concentrator with me, but on long ones we'll rent a unit. It's during those short trips that I appreciate coming home to the oxygen even more...it's amazing how much better I sleep!

I'm thankful for breaded shrimp. I don't eat anything breaded that often, but when I do, it's always good, especially shrimp. There are times I wish that we lived closer to an ocean so I could enjoy the fresh stuff, but then again, if we lived near an ocean, we could only afford to eat Ramen.  

So, what are you thankful for today?

Thankful Thursday: Kidzone & Clouds

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 childcare at the gym. Ronnie and I are able to take Mckenna to the Kidzone and spend some time together pumping iron. I am so thankful that we can spend some time just the two of us, doing what we love to do together, while Mckenna plays happily with her "friends" at the gym.

I'm thankful for family close by. Monday night Ronnie, Mckenna and I popped by Josh and Chrissy's (my bro and sis-in-law) and then we all went for a walk, and Tuesday night Ronnie's bro, Andrew came by for dinner. I really love having family close by, so we can hang out a lot!!

I'm thankful for middle of the night snuggles. Mckenna is a ball of energy. She is always on the go. She rarely will just lay back and let you snuggle her. One of the only times she just lays, totally melted into my arms is during her middle of the night feeding. While getting up to feed her in the night may initially seem awful, the thought of weaning the last remaining night feed makes me really sad. I don't want to give up those snuggles just yet!

Ronnie's List:

I'm thankful for cloudy days...and I cannot believe that just came out of my mouth. So, I'm an Arizona guy born and raised, and so with that, I'm a total sun in the sky without a cloud in sight kind of a guy. But, when it starts to heat up so much, so early in the year, I'm actually thankful for the occasional cloudy day. Cloudy days not only give my garden a little break, but they also give Mandi, Mckenna and I the opportunity to take our walk at any time during the day!

I'm thankful moisture meters. I'm no green thumb. This is my third year gardening, and although I have learned quite a bit, I still have a LONG way to go. Something I read from other gardeners is that they "know their plants". Like I said, I don't think I've been in the game for a long enough time to get the vibe from my plants yet. I mean yeah, I can tell if they're severely under-watered, but I think pretty much anybody walking the streets could too. That's where my handy-dandy moisture meter comes in. I simply stick in it the ground by the root of the plant, and it tells me whether or not I need to be watering. Anything that takes some thought out of gardening is good in my book!!

I'm thankful for daytime workouts. Because of great childcare offered at our gym, Mandi and I have been able to take a break from our workday the last couple of days and hit up the gym. I love working out with my wife and I love getting my workout done and over with. Day workouts are definitely a win all-around in the Sharpe household!!

So, what are you thankful for today?

Dear 16-year-old-me

Hey Ronnie,

So I've been thinking a lot about you lately and I wanted to write you a quick note based on some things I've learned over the past 16 years. You see, I'm 32 now and have now doubled you in age. I'm not saying that I'm twice as smart, but I'm definitely at least twice as wise and then some. I would be remiss if I didn't share some things with you as you embark on the post-16-year-old journey that you're about to start.

First, let's talk about some things that you're doing right...

I know you don't take school very seriously, but I'm proud of you for not letting your grades slip. You'll be in college soon, and as a result of those good grades, you'll be able to save your folks some money. They can't afford to be shelling out college tuition along with paying for your little brothers private education. And you may not think about it now, but at some point, you'll be able to share the GPA with your future daughter.

I love your commitment to sports. You're a competitor just like me and I see how it fuels you in life, on the field and in the classrooms. I know that you're playing sports because you love them, but I'm telling you know, it's going to pay off in ways that you can't even grasp right now. So, stick with it, give it your all, and know that the memories you're making now with teammates with last with you forever.

And finally, I know this is something that you rarely think about, but good job on your treatments. Now, it's not entirely up to you as I understand it, but know that your mom is doing what she believes is best for you, and guess what, she's right. You're building up a baseline health right now that I promise you'll be thankful for in the future. Sometimes, it's not even about your lungs or about the treatments, it's about establishing what's important in your life and what's not. You're mom realizes that treatments are important, and even if you don't at the moment, you will when you're my age.

With that in mind, let's talk about some of the mistakes I made when I was your age with the hope that you won't repeat my offenses...

Speaking of your mom, don't give her such a hard time. Don't you realize that every decision she's made for the last 16 years has been because of you?? There are things that she wishes she could have done, or extra money that I'm sure she would have wanted to spend on herself, but she didn't - it all went to you. She loves you and your brothers more than you'll ever know and the amount of sacrifice she's given to the family will never be able to be repaid. But, with that said, you can start by acting like you love her instead of just saying it.

You need to be nicer to people. I know you think that you stick up for those less fortunate and knock other people down "a few pegs" who you think deserve it, but in reality, it's not your job to knock those people down. Approach them like a man and get to know them and just maybe you'll see what makes them tick. Right now, you're just being a boy who gets the approval and laughs from your friends by being mean to others. That's not right and that's certainly not what God would want you to do.

Speaking of God, get to know Him for yourself. Right now, the only reason you know Him is because your parents make you "know" Him. Your walk with God isn't about going to church; it isn't about praying; and it isn't about telling people that you're a Christian. He wants nothing more than to develop a relationship with you that's real and personal. All of that other stuff is important, but none of it holds a candle to actually knowing the heart of your Lord and Savior. When that happens, you can't help but have it bleed over to other areas of your life. Pursue Him, He's waiting.

I know it sounds like I'm harping on you a bit, but it's only because I love you. You're a good boy right now, but I think you can be an even better man. I know that's in your heart and I look forward to watching you grow.

Oh, and one more thing, break up with your girlfriend. You're wasting your time. God's already created the perfect woman for you, but you won't meet her until you're 28. I know it sounds like a long time from now, but you're going to need 12 years to become the man of her dreams.

Sincerely,
32-year-old Ronnie

**This post was inspired by the WEGO Health Blog Challenege

The Impact of an Accident

This blog is actually less about the accident and more about the impact of that accident (pun intended)....

Mr brother, Grant, and his friends were on their way to California for spring break this week and got into a car accident on the way. Before you panic, everything is okay, but the car they were driving is now inoperable. They were coming up from Tucson on I-10 through Phoenix and got into the fender bender at the same exit you would take to get to my house. Kind of crazy right? My brother called me to see if I could pick them up while they figure out the plan. I was not able to to do because we're down to one car and Mandi was out with it at that time.

Side note: We're down to one car because my other brother, Andrew, is using our Corolla while his car gets fixed in a body shop - yes, he was in an accident too (not his fault though)

The boys ended up throwing around a football in a truck stop parking lot waiting for Andrew to pick them up when he got done with one of his clients. The whole group came over to watch the Arizona-Colorado PAC-12 Championship game (I'd rather not talk about it). It was of course nice to watch that game with both of my brothers and was the first time this season I was able to do so (usually it's just Andrew and I).

The car got towed back down to Tucson and then the following day, Andrew took the whole group to a mid-point between Phoenix and Tucson so they could get a ride back home.

Soooo, what was the point of all that? If you're still reading, thank you for bearing with me. Here's the point: Grant called me a couple of nights ago bumming out about his spring break trip being ruined because of the accident. He asked if he could drive back up to Phoenix and just spend the week with Mandi and I. Uhhhh, yeah!!! See what happened there?

Grant might not be doing exactly what he thought he'd be doing this week, but he's still having a great time. We've been able to hang out a bunch in the last couple of days, and do some stuff together that rarely get the chance to do. He really likes gardening, and it just so happened that this week was the week that I was setting my all up for the spring/summer! My brother Andrew helped me get started on Monday and then Tuesday, Grant helped me knock it out. Sometimes, even though things don't happen or workout the exact way we were picturing, they still tend to workout. I know that Grant is enjoying himself and we are certainly feeling very blessed to have him around.

Which leads me to my final point - there are times in our lives that may seem like a low point, but we must remember that it can still be an opportunity to bless others. Sure, I was bummed that Grant wasn't able to go out to California for spring break, BUT I feel so lucky that I get to spend the week with him. His misfortune has turned out to be a blessing to me and my family and, as I believe he'd agree, him also.

It's so easy to get stuck into thinking about how are present situation is affecting us, and us alone. It's a big world out there though. We may be going through a bad season for the sole purpose of showing someone else a good season in their life. Something in our life may become a burden only to lighten the load of someone else. It's always good to take a step back and look at various ways our own struggles can actually positively impact the lives of others. 

If we're able to do that, we just may see our car accident as a huge blessing.

The Year Ahead

I'm not a big New Year's resolution kind of a guy. I figure that if I need a certain day of the year to get me motivated, then making some a "must do" resolutions is the least of my worries. I do however like to look at the year ahead and figure out some things that I would like to accomplish or continue to do. They're not resolutions as much as they are plans for the future.

My number one focus this year is my family. Not only do I want to be the husband my wife has always dreamed about, but I want to be the kind of husband that blows away her expectations. I know that she would never say this, but she deserves that from me. The day I was blessed enough to make her my wife was the day that she made my life complete. I was finally given the woman that God created just for me and I could not have been happier. She "checks off all of my boxes" and my hope is that I can check off all of hers...and then maybe add some that she never thought about.

I also want to be the dad that my precious daughter deserves. There really isn't a whole lot that I can do right now besides meet her basic needs, but I can prepare myself for the future. Part of that is taking care of myself physically and also being there for Mandi so she can take care of herself. If we're there for each other and co-parent like we've always planned, that gives us both the much needed mental breaks once in a while as well. As we anticipate Mckenna growing from an infant to a toddler to little girl to a teen; I just hope that I can continue to sharpen my skills to be the father that God created me to be.

A big part of that is making sure that I'm capable to be the spiritual head of this household. I'm sold out on the fact that God has already laid out a plan for our family that is perfect, and a big part of that plan is for us to seek His Will. That of course is always a tough thing. How do I know His Will for my life? I don't have a blueprint for my life, or my family's(although that would be nice), but He did provide a blueprint for all of humanity to follow. This year I need to be sure to open up that blueprint, focus on what it says, talk with the Author and then wait for His response.

There are also some other things that I'd like to see done this year, but compared to what I've already talked about, it seems very arbitrary. I'd like to continue to pour into CysticLife.org and make sure it's the space that the CF community deserves. I'd like to I'd like to replant and spruce up my garden. I'd like to do a couple of house projects, not sure what they'll be, but something cool. I'd like to travel with my family of three. I'd like to continue to reach a couple of people with this blog.

So that's what's in store for me (if I have my way) - what about you???

Teenagers and Cystic Fibrosis

Question: My 15 yr old granddaughter. She has rebelled at times on treatments.Drs say it is age she will get better as she gets older. Were you always as good about it? Any feed back on this will help.

The doctors are correct in saying that it will get better with age. Teenagers in general are rebellious with or without CF. CF only exacerbates the problem as there is nothing more important in a teen's life than status and friends. Having CF and doing treatments can unfortunately at times interfere with these two things. I'm guessing that she has said more than once "I just want to be like my friends," or "I hate CF". Both of these are very common and very valid responses to having CF as a teenager. What she's going through is tough and is not at all fun.

What we must realize however that, "being like our friends", includes having the ability to do what they do. Whether we like it or not, this is made possible by our health. Not being at a good place with our health inhibits our ability to just be "one of the guys" (or in this case girls), but it's hard to see that as a teen.

We often think about treatments as a means to an end when we're sick. I encourage people to think about treatments as a means to an end when we're healthy. What I mean is this - we must be willing to do everything necessary when we're healthy to put ourselves in the best position not to be sick. Treatments need not be a response to sickness, but used in conjunction with wellness.

I use the analogy of a scale. On one side we have someone "sick" with CF and on one side we have someone "healthy" with CF. Now, if you had a rock that represented doing treatments, which side of the scale would you put the rock? Who do we as a community instinctively think about as "doing more treatments" than the other person? I would put forth that most of us would put the rock on the side of the scale with the sick CFer. This certainly isn't true for everyone, but from my experience, that would be my hunch. Now, each one of us must answer why we put the rock where we did and that will generally tell us about our view of CF, control and treatments.

As for me, I put the rock on the side of the healthy CFer. When I was a teen? Not so much. I thought only "sick people" did a bunch of treatments. Granted, I was doing two a day, but it was rarely willingly and not something that I looked forward to. In many ways, I fell into the trap of being "too healthy" with CF. See, in high school; my FEV1% was around 110. I felt and acted just like everyone else. The only time I thought about CF was during said treatment times and when I required a hospital stay due to an exacerbation (about twice a year). Apart from those times, CF never entered my mind. I felt some relief from my treatments, but I didn't feel THAT much.

What really made my lungs feel like a hundred bucks was football practice, or any other physical activity like basketball, baseball, running etc. That's another thing to point out - until I started playing sports year round, my FEV1% was nowhere near that 110% that I mentioned earlier. So in essence, I was doing a ton of treatments, 2-3 hours per day to be exact, just not the traditional treatments (nebs, vest) that we think about. I was doing additional treatments in the form of sports and exercise. To this day, nothing makes me cough more or produce more mucus than running, be it on the treadmill, street or football field.

My family supported me in many ways regarding treatments and CF care. I think a lot of the credit has to go to my mom for being quite possibly the biggest reason that I took such good care of myself growing up. She had quite a “unique” strategy – My house, my rules (I’m of course kidding when I say that it was unique). One thing I’ll say however is she delivered this strategy with complete love. I never doubted for a second that I, and in turn my health, was the single most important thing to my mom when I was growing up. I was an only child for quite some time, so my mom was able to focus all of her energy and time on making sure she did everything necessary to put me in the best position to succeed. This included running me around to practice, supporting me when I wanted to try a new sport and most of all, holding her line when it came to treatments. 

Here’s the deal though, she balanced that with great freedom. I had a very normal childhood. I could do just about anything I wanted to do in terms of sleepovers, extra curricular activities, etc AS LONG AS my treatments were done. And when I stepped out of line, she didn’t waffle or give me another chance; I faced consequences for not following the rules. She only had to keep me out of football practice one time to show me she was serious after I chose to rebel against treatments that particular morning.

All teens have something important to them. All parents find their children, including teens believe it or not, important. In my opinion, effective parents mesh what’s important to them with what’s important to their teen. There is one key thing to remember though – one is the parent and one is the teen. In a perfect scenario the parent and the teen can come to a mutual agreement about treatments and expectations. But, and this is a big but, perfect scenarios aren’t the majority. At some point, the parent must decide what’s more important to them, a perfect scenario or their teen doing his or her treatments.

There is hardly a fool-proof strategy when it comes to convincing teens that treatments are important or implementing a system that results in few missed treatments, there is however a great reward for parents, and teens, that manage to do so.

Polar Express in Pictures!!