Prayers for Strangers

(Mandi here - Even though it's not Monday)

I'm not quite sure why I'm writing this blog, but I feel inclined to, so I am.

Over the last several years, we have gotten connected to many CF families and patients. We feel drawn to others' whose stories are much like our own. We share tips, tricks, successes and challenges. We can show our lives very transparently to friends and family, but very few understand our life that are not walking in similar shoes. We have discussions about topics with our "CF friends" that others will never understand and quite frankly, discussions we never think to have with others. We discuss insurance, medications, life stresses and mortality in a completely different way than with anyone else. We joke about topics that most would cringe at the thought of. The way we think is wired entirely different than how others think, regardless of how much you try to explain it to people outside of the CF community. These friendships are pure blessings and bring pure joy.

Through a friend of ours in the CF community, I learned of another story. A story very different from ours, but potentially, one day, very similar (isn't it interesting how that works sometimes?). The husband was battling cancer. I checked in on their blog, their life and their struggles. In a weird, twisted, and probably (semi) unhealthy way, I placed myself in the wife's shoes. That may sound odd to many of you. But to some of the other CF wives reading this blog, I think I'm not alone in this rabbit trail. I often read a story of a dying spouse and watch how they are handling their struggles. I take mental notes of the admirable things they are doing. I watch their strength. I try to commit their actions and thoughts to memory. I try not to, but I get completely sucked in. I feel their feelings. I picture myself in those shoes, one day. I feel if I have studied the actions and attitudes of those who have walked that path successfully before me, I can walk my own path with more grace. I have checked in on this family and watched as they have all traveled their path so beautifully. The wife is a woman of true character and a faith that is breathtaking. Her attitude and answers to some of life's hardest questions are incredible.

Tonight my heart aches for this sweet family. Tonight the husband and daddy went to be with the Lord.  Again, I don't know why I feel compelled to write this blog and share their story (one that already has touched thousands upon thousands), but I do. I ask that you lift this family up in your prayers. Pray that they feel a peace that cannot be explained. Pray that tonight their house feels abundantly full of God's presence, in the absence of their husband and father.

You can read about their story here: http://hurstfamilyupdate.blogspot.com/

Thankful Thursday: Cooking Class & Grass

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 fun date nights. Last night Josh and Chrissy were nice enough to watch Mckenna, and Ronnie and I got out for a date night. Instead of the typical date of dinner or a movie or something, we decided to try taking a cooking class together. It was a blast, and we got to eat some yummy food to boot.

I'm thankful for good runs. My dad and I are still going strong in training for our marathon in January (did I mention I decided to train for one after we found our we are not preggo and decided to take a break?) Anyways, Saturday was a 12 miler and we both felt great. I'm thankful it feels good.

I'm thankful for snuggles. Mckenna has slept through the night for ages, but for some reason the last few naps and nights she's been waking up, crying, and seemingly off. I've been going in, thinking maybe it's a bad dream waking her or something, and giving her a quick snuggle before laying her back down (which does the trick and she's back out cold). While it's not awesome having your sleep interrupted, I wouldn't trade the few minutes of sleepy snuggles for anything!

Ronnie's List:

I'm thankful for grass. Our grass has been struggling in rather large areas during the summer, so I'm happy to see our winter rye starting to come in nice and thick to cover the entire yard. There's just something about a nice lush green lawn that does the soul good...and my wife loves it, so that's always a win!

I'm thankful for power washers. My neighbor let me borrow his power washer and now our sidewalks and back porch look brand new! Well, maybe not quite brand new, but that probably has more to do with the user and not the power washer. The power that that thing possesses is crazy!

I'm thankful for short airplane rides. Recently, I had a trip that required an 1h15m plane ride. It seemed like quite the luxury and probably the shortest flight I've had in quite some time. For some reason, I'm always flying to the east coast. I also got to sit behind a 9 month old who I kept entertained for almost the entire flight. It was fun!

What about you? 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)!

My Birthday Girl(s)

One year ago today.
I don't think either of you have grown :)

We have two special birthdays coming up in the Sharpe household...wait a second, one is already here...HAPPY BIRTHDAY MANDI!!!! We also have a birthday coming up tomorrow, but this blog is focused on my one and only. No, not Jezzabel, this is all about my beautifully stunning and incredibly sexy smart wife, Mandi.

Last year for your 26th birthday, I made a list of 26 things that I love about you. I wanted to do another list, but I couldn't come up with 27, sorry ;)

This year I thought I'd keep it simply and just tell you that there isn't anything that I don't love about you. I really wish there was. It's kind of annoying that I can't find a single thing that I don't dig about you. Seriously. I've always been able to pick out at least one thing I don't like about someone, that is, until I met you.

Do you know how hard it is not to give in to your every wish? All I want to do is make you happy. If there was something that annoyed me about you, I could always at least get some time to myself away from that thing. The thing is, the longer that we've been married, the more I want to be around you. The days that I'm away from you are stupid and I don't like them. (Picture me with arms crossed and a big pouty face right there)

Anyway, I love you. I should probably save some of the mushy stuff for your card in case anyone is reading this while trying to eat breakfast.

HAPPY BIRTHDAY HONEY!!! I LOVE YOU SO MUCH MORE THAN I DID WHEN YOU WERE JUST 26!

If You're Happy and You Know It...

...Clap your hands. (Clap. Clap)

I'm sure some of you are wondering how we're doing after the event's of last week, so I wanted to just post a little update.

As always, the Sharpe family is doing well and moving forward with happy hearts. Of course there were tears on Monday, but Tuesday we woke up with new attitudes and new outlooks. I have to admit, I even woke up feeling pretty free. It was nice to wake up and have no restrictions and no medications to be taking. Obviously being pregnant would have been preferred and I'll happily take restrictions and meds if that were the case, but that wasn't the reality and freedom is a second best for now! But overall, we just felt good that we had an answer (fellow IVFers, you know how that 2 weeks wait is!) and we're at peace knowing we're in the exact position we are meant to be in. It feels good to know that we are at the exact spot God has for our family and we are rejoicing in that.

And speaking of no restrictions and freedom, I've decided to use this break to do something I've always wanted to do: run a marathon. So I started training right after the phone call from the clinic. Anyone else run to clear your head? I'm pretty excited to train and finally check a marathon off of my bucket list. I'm all registered and a week into training for the Phoenix Rock n Roll marathon in January! It will be a great distraction and a great way to get into better shape before circling the wagons to try again.

Lastly, I'm feeling great about the timing of the failed cycle. Why? Welp, Mckenna's birthday is on Thursday, and what better way to move on from bad news than celebrating your baby's second birthday? Of course we love and cherish Mckenna every day, but celebrating her second birthday is a great way to really stop and take time to think back on how blessed we have been for the last two years and reminisce about the little blessing we currently have. I plan to spend the day spoiling her with hugs and kisses...which I'm sure she will love, although she will show me by saying, "No mommy!"....ohhh I love two-year-olds. Life with a kid seems to fly by. Hours turn into days, days into weeks, weeks into months. A birthday is a great reminder to breathe it in!

Anyways, I didn't have much to share, but wanted to let you know that we are doing well and moving forward joyfully and with contentment.

My "Get Healthy" Checklist

Guest blog by Ashley Coleman

If you asked me who I am and what I am about, you probably wouldn’t ever hear me being defined by my Cystic Fibrosis. First and foremost, I am a devoted follower of Christ. My passion is to help people find truth. The truth sets us free. Where does freedom come from? Jesus Christ. I’m defined by few things outside of Him, but Ronnie has asked me to write about my Cystic Fibrosis journey, and so I will.

Stay with me as I make this long, long journey into a few paragraphs. At the end of February 2012, I noticed I was getting sick. I had just finished a long day at work and had a really lame workout because I was so fatigued. I bought some groceries because I knew I would need a few days of rest. Little did I know, I wouldn’t be able to carry those groceries in my house. I was so out of breath, I had to call my mom to come unload my groceries. This was a Sunday. She convinced me if I was still unable to make it up the stairs without getting out of breathe that we would visit our local ER (not my CF Clinic that is 90 minutes away). Needless to say, I didn’t improve and I found myself staying in the local hospital for a night without them knowing what to do with me. I was sent home with some oral antibiotics and not even given a PFT.

A few days later, I found myself walking the halls of my CF Clinic, Tulane, to my doctor’s office unable to even carry my purse. Once again, Mom to the rescue and after much convincing my doctor admitted me. I stayed 3 nights and was released just in time for my 25^th birthday. 20 pounds lighter, lung function at 57%, first PICC line, first CF hospitalization, first real CF exacerbation; I was scared.

57% was a number I had never seen. Not me, I am healthy. Not me, I don’t really have CF. It was time to wake up and get out of this cozy place of denial and take control of my health and well being. For two weeks, I did every single IV and breathing treatment and even walked some. There was no getting past this; it was now or never. Wake up and deal with my CF or just lay here and die, literally. It was life or death for me. I did improve to 78% but that wasn’t good enough for me.

I was born a fighter. Not literally, but figuratively. I was not going down like this.

As soon as I got my PICC line out, I was cleared for vigorous exercise again and could get super sweaty. I grabbed my Insanity DVDs and sometimes did two workouts a day, walked my dog, did every single treatment, and went to the gym. I packed on some weight, a little more fat than I wanted, but over the past 18 months my body composition has changed. I have packed on solid muscle and improved my lung function to 95%. I went from 86% to 95% in just three months. At 86% my doctor’s words were “don’t expect too much improvement from here” so just imagine his reaction when he saw 95%!

My biggest and only change is exercise. I workout 30-120 minutes per day, 6 days a week. Every day I go to the gym to workout a different muscle group. I would recommend beginners to start with a 3 day a week full-body routine, but I have been weight lifting for about 3 years now. I also do some sort of cardio. Lately, it’s been Insanity videos, swimming, and running. Now that it’s getting cooler out, I am going to be cycling more. I also walk my dog 1-2 miles a day and I look forward to that increasing as well. My diet consists of anti-inflammatory foods 5-7 days a week.

So what do I suggest to improve your lung function and quality of life?

•      Add things before you start taking away. Add the anti-inflammatory foods before taking your daily Doritos away. Eventually, you will begin to relate how you feel to what you are putting in your body. FOOD is FUEL. Add a little exercise at a time. You don’t want to overwhelm and burn yourself out.
•       Do what you can with where you are and what you have. What does this mean? If you can walk to the mailbox and back 5 times do it, then do it again the next day and do it 6 times. If you can run a mile, do it. If you cannot afford a gym membership, do your best to fit that in your budget. Join a class at the gym. The YMCA turns no one away for being unable to pay.
•       Don’t do this alone. Get friends involved. Ask for accountability, whether that be friends in person or friends on CF forums. Make a commitment and do it. If you can afford it, hire a personal trainer 2-4 times a week. I am beginning online training if you are interested, but I’m not here to plug myself. A financial investment is sometimes all you need for lasting motivation.
•       Mentally prepare yourself. Tell yourself every single day that you can and you are doing this.  Tell yourself what a good job you are doing and truly believe it.
•       Hebrews 12:11 says, “No discipline seems pleasant at the time, but in the end produces a harvest of righteousness”. I posted this scripture everywhere in my house.
•       Be kind to yourself. You will not change over night. You aren’t where you want to be, but you are on your way. Remind yourself every day of this. Love yourself well enough to take care of yourself.
•        Find a balance. Be diligent with your treatments, but also don’t beat yourself up if you miss one. It’s okay. Find that healthy balance.

Please, let me know what I can do to help. My goal is to see us as a CF community (and human race as a whole), take charge of our individual health – mind, body, and spirit. We can do this. You can do this! Believe me. Believe in you.

Bio: Ashley is 26 years old and lives in Mississippi. Ashley is trying to make a difference in this world, starting with her community while seeking health in all areas of life, freedom, and happiness for herself and others. She hopes to encourage and inspire transformation, not only those with CF, but every person she comes in contact with to be healthy and strong, but most importantly tap into God's perfect plan for their life and walk in God’s promises for all of us. She is a personal trainer and aspiring writer and blogger. She is passionate about life, loving people well, laughing, running, reading, and learning. Ashley believes every day is a journey, an adventure, a learning experience, and another opportunity to live a day full of love and life. Join her on this journey by visiting her blog: http://www.findingtruth1.blogspot.com/ She would also love to hear from you. Her email is ashleycoleman87@gmail.com. 

Thankful Thursday: Freedom & Access

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 bread machines. After paying $6 for a loaf of bread that didn't have chemicals and additives, I decided I should just make my own. So I've been making my own lately, and holy moly, it's awesome. Not only do I get to eat awesome bread, but a couple times a week I know what it's like to feel like an elderly woman in the 1920s (because those are the only people that made bread, right?)
I'm thankful for a sick toddler. Ok, I'm not thankful that Mckenna is sick, but I am thankful for the remind to appreciate good health.

I'm thankful for freedom. With the exception of one month, I've been on an IVF medication protocol for almost a year. As bummed out as I am that our last cycle didn't work, it does feel glorious to be done with shots, pills, and lozenges for awhile. I'm especially thrilled to be done with my progesterone shots because according to my nurse I have an insane amount of scar tissue from all the rounds that "must make these shots really painful".

I'm thankful for tea parties. Mckenna loves having tea parties lately and it melts my heart to watch her as she pours us both tea (water) and says, "cheers". It's also great for a laugh to watch her try to put a pinky out while she laughs!

Ronnie's List:

I'm thankful for access. I'm not talking about access to healthcare or internet access, I'm just talking about access to stores. It's amazing that we have the ability to get into our car, drive a mile or two, and be surrounded by stores that have the things that we need...and maybe more accurately, want. I needed a new file case this morning when my old one broke; A 5 minute drive later and I had one in hand. Amazing!

I'm thankful for the health to battle through sickness. I had clinic on Monday and of course did PFTs. I wasn't sure how they'd be since I had been battling back whatever Mckenna had for a good five days. I definitely wasn't sick like her, but I did have earaches, increased cough, increased sputum, etc. In June of this year I blew a 75%. On Monday, it was a 73%. I'll take it!!

I'm thankful for collaboration. One of the knocks I hear about people/organizations in the CF community is that there isn't enough collaboration. While this is true for some people and some organizations, this is certainly not true for me or CysticLife. I've been working for quite a while on something with some folks in the community that we're going to launch real soon, and I can't tell you how excited we are to see the response.

What about you? What are you thankful for today?

Question from Reader: When Cystic Fibrosis Impacts Our Relationships

As you guys know, I love answering questions on topics I have experience in. I've been blessed to have had many great relationships in my life, and now, I'm able to call the most awesomest girl on the planet MY WIFE (still can't believe it)! We all know that cystic fibrosis can impact our relationships - both positively and negatively. This particular question comes from a fellow fibro who was recently heart broken when his girlfriend of 6 months decided that CF, and the possible implications and impacts of the disease, was more than she could handle.

Hello Ronnie,

I have cystic fibrosis as well. You have been a huge inspiration to me both physically regarding CF and spiritually. I apologize for not introducing myself sooner.

However, the reason I am messaging you is because I have a broken heart. My girlfriend of 6 months told me this evening that she could not see herself marrying me because if we had children (through assisted fertilization) I might die before they get a chance to grow up. We have had that discussion  before and she was devastated but I thought she had come to accept it. For the last month or so she has been saying that we need to break up and she would never give me a reason and her actions contradicted her words of "we need to break up" because everything she does indicates she still wants to be with me. Tonight she finally broke down and told me its because she doesn't want kids to grow up without a dad and also the fact that intro vitro fertilization (sorry if I misspelled anything, my knowledge on the matter is limited) is so expensive.

Is it wrong of me to expect her to be okay with the unsure future? I'm devastated.

I have come to you seeking advice because I know you have been through this, you have a beautiful daughter, and your life example (through my perspective on Facebook) leads me to believe that  you have the experience to help me.

Sorry to hear about this [name withheld]. I can only share with you my own experience and hopefully it can help a bit.

Very early on in our dating life, Mandi caught me off guard by saying, "I wouldn't marry you unless I was totally comfortable with being a young widow."

I was shocked that she would even think about this, but, that's because I don't have an "outsiders" perspective, and frankly, I'm a man. We men generally don't think for the future, we think for the present. Women on the other hand are wired a completely different way.

It takes a very special woman to commit their lives to a man with CF. Our life is simply different. There are sacrifices we have to make as a couple that no other couple has to worry about. And, there is the prospective of an untimely death that would leave them all by themselves for an undetermined amount of time.

So, to answer your question - Yes, it is wrong of you to expect her to be comfortable with being a young widow and/or a single mother. Most girls won't be comfortable with that. Is it a reality that it could happen? Sure. Are we planning on it? Absolutely not!!

Her worry about IVF being expensive is just noise and her grasping at straws. You can figure out the money part.

I'd be thankful that this is only coming down at 6 months into the relationship. I understand that the pain is real, the hurt is real and you're not feeling great, but it could have been much worse. Imagine if you were engaged when she realized this?

Sometimes, God places something on the heart of the girl who is wrong for us. The wrong girl needs to be out of the picture before the right girl can enter it.

One week before I met my future wife, my girlfriend and I of over 2 years broke-up. I wasn't happy about it at the time. But, looking back, I thank the Lord that He ended that relationship when He did.

Hope this helps and please let me know if you have any questions or comments.

We're Not Pregnant

...Well now that that's out on the table, I should explain...

We said we would give IVF updates when it felt right, and well, now seems like a good time. Since our break early in the summer, we got back on the wagon. We did a frozen cycle. A similar protocol to another we had done with an added medication. Thankfully, this time we actually made it to transfer, which we are really thankful for (what a blessing to have found a protocol that works for us). We transferred two perfect-looking, little loves on Friday, September 27^th.

Unfortunately we learned today that it didn’t work and we are not pregnant.

It is tough news to hear. There have been a lot of tears. It is hard to devout your life to trying to have another baby for nearly a year and to again get devastating news. It makes me sad. It adds to the fear that this may not work for us again. It brings the realization that I may never carry a baby again closer. It breaks my heart to know I may never feel little kicks again. It makes me regret not committing those last few kicks from Mckenna to memory a little more. All of those things flood my head as I consider the fact that we have now used 4 of our 6 embryos, and that we are running out of chances. It hurts.

Yesterday at church we had a guest singer, JJ Heller. She’s a Christian artist who is phenomenal. JJ Heller is a favorite of ours. I actually labored with Mckenna with her music on in the room, and Mckenna was born with it playing in the background. In the first weeks and months of Mckenna’s life I endlessly listened to and sang her song “I Get to be the One”…about the blessing of getting to be the one to raise your child. Yesterday she was at our church for the first time in years singing a song of hers I had never heard before called “Who You Are”. When she started singing, I started crying. The song starts, “all she wanted, was a baby to hold…” I lost it. Knowing my test was today, and knowing that God had her at our church yesterday, I knew this was a song for me. The song continues, “…she’s praying, ‘I don’t know, I don’t know what you’re doing, but I know who you are.”

There are no truer words. As the song says, “sometimes life doesn’t make any sense.” Sometimes we don’t understand our circumstances. Sometimes we wish we knew why. But I realized today, my job isn’t to know the why. I will never know some of the whys in my life. And that needs to be ok. The only thing I need to know is who my God is. And my God is ALWAYS good. The only thing I need to focus on in this situation is Romans 8:28:

“And we know that in all things God works for the good of those who love him, and who have been called according to his purpose.”

So while my mind wants to race to the why’s of the past, the pain of the present, and the possibilities of the future, I am choosing to still my thoughts and pray, “I don’t know what you’re doing, but I know who you are.”

As for our plans moving forward, we need a break before trying one last time with our remaining two embryos. I don’t know how long we will wait. I’m hoping sometime in the next months or year, there will be a time that just feels right.

But to end this blog on a lighter note,  I leave you with a break-up letter I’ve written to IVF:

Dear Invitro Fertilization –

We need to talk. Please know what I’m about to say is out of love, and it will probably hurt me more than it will hurt you, but it has to be said.

I need a break.

It’s not you, it’s me. We’ve been back together for 11 months, and well, we just aren’t working right now. And please hear me when I say it’s not you. You are great. I love and respect you. You are so good, and I’m constantly amazed by you. But we just aren’t good for each other right now. Over the last 11 months, you’ve driven me crazy. When we’re together, I’m always weepy, emotional, and snappy. And honestly, I need a break from all the drama you bring into my life.

And this isn’t a break up…but a break. I need some space for awhile. I love you. Afterall, we have one child together. Let’s take this time to improve ourselves. You get better at all that you do, and I will take this time to focus on me. I want to train for new things, lose some of this fluff you’ve helped me gain, and most of all, get back to my normal self mentally and emotionally.

This isn’t goodbye, it’s see you later…

Thankful Thursday: Sick Toddler & Spontaneous Outings

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 nights out with my hubby and parents. Last night Ronnie, my parents, and I went to a John Mayer concert. I love John Mayer and LOVE time with my hubby and parents.

I'm thankful for a sick toddler. Ok, I'm not thankful that Mckenna is sick, but I am thankful for the remind to appreciate good health.

I'm thankful for TV. There, I said it. I'm thankful for TV and the ability to use it as a babysitter for short little periods when I need a quick break or a distraction while I need to get something done. Does that make me a bad mom? Umm, I don't think so - I'm not putting on Saw or Chuckie :)

Ronnie's List:

I'm thankful for a healthy baby. Mckenna is sick right now, and it makes me appreciate the times she's healthy even more. Not that she isn't being a trooper, she is, but I'd rather her feel well :) She's coughing up a storm until the point that she throws-up and keeps saying, "Mckenna sick, no gym" (she can't go to gym childcare sick). She's so sweet.

I'm thankful for spontaneous outings. My father-in-law and mother-in-law invited Mandi and I to the John Mayer concert last night and we had a blast. I'm not the biggest JM fan in the world, but I do like his style and of course I know his classics. Phil Phillips opened up, which was cool, because I'm a big American Idol fan.

I'm thankful for support. I know I've mentioned this one before, but I don't know how people make it without a supportive spouse. I'm thankful that Mandi supports me even when it's not ideal for her and I have another one of my crazy ideas/hobbies/projects/careers that I'd like to start (THANKS BOO!!!!).

What about you? What are you thankful for today?

Thankful Thursday: Cooler Mornings & Rules

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 cinnamon crunch bagels from Paradise Bakery. They're so delicious! I could eat one a day...forever.

I'm thankful for cooler mornings. It's starting to be "chilly" in the mornings (in the high 60s, low 70s) and it makes for some beautiful runs!

I'm thankful for my parents being close. My parents are a HUGE help when it comes to watching Mckenna, and even more, they make for great company a couple times a week when Mckenna and I go swimming at their house. It is so nice when your parents go from just parents to friends!

Ronnie's List:

I'm thankful for a slight change in weather. It's started to cool down just a tad at night (and early) here in the desert. I love it for the obvious reasons, but also for maybe not so obvious reasons. I LOVE to see my girls in sweatshirts. They both look so cute and wear them well :)

I'm thankful for a daddy's girl. Mckenna isn't a daddy's girl all of the time, but when she is, I sure do love it. She pretty much insists on me putting her down at night and I'm really thankful for the snuggle time I get to have with her.

I'm thankful for rules. Life's easier and better with rules. Rules take the thought and emotion out of decisions that could become messy if we think about it or use our emotions. And with that said, I'm thankful for rule number one - God is good and He is good all of the time. 

What about you? What are you thankful for today?

The First Time Cystic Fibrosis Was Real to Me

**I recently stumbled upon this post written by Mandi way back in 2009. Gives some of you new readers a good glimpse into the beginning of our relationship and how awesome Mandi is for sticking around!!**

Ronnie's carefree attitude always makes Cystic Fibrosis feel so easy; so manageable. Sure he has his good days and bad days, but for the most part CF doesn't play much of a role in any given day. However, I have come to learn that the CF Ronnie portrays and the CF Ronnie has are two very different things.

After dating for about 6 months, Ronnie and I went to China together to visit my parents. In China, he experienced the perfect storm of a chest cold, polluted air, cigarette smoke galore, hemoptysis, and one long flight back to the US, but I didn't realized just how bad off he really was. I knew he didn't feel well on our flight home. In fact, I spent the entire 12 hour flight watching him as he fell in and out of sleep and consciousness. I'd watch his chest for movement and nudge him if it looked like he was "gasping" for air more than he normally does when he's asleep (anyone else breath like that? It almost sounds like a slow, drawn out bull frog croak). Still I wasn't nervous. He'd give me a reassuring smile here and there, crack a joke or two, and let me know he'd be fine.

We got him back into the country and into the emergency room. We sat there for hours. Ronnie's sats were low enough that the nurses seemed quite alarmed, so they put Ronnie on oxygen, and kept upping the number of liters, from 2 to 4 to 8. Ronnie didn't look like he felt the greatest, but still he gave me a reassuring smile, cracked a joke or two, and continued to tell me he was fine. Around 3 am, he told me to go get some sleep. "I'm just waiting for a room," he said. "Go sleep and I'll be all set in the morning when you get up." So I did.

When I got to the hospital the next morning around 7, I found him in ICU. He was sound asleep, hooked to all sorts of machines making all sorts of noises. The most alarming of all, however, was the bipap. I later found out that they were unable to keep his sats up with oxygen alone, so they had him on the bipap to attempt to get more oxygen into his body. I sat there just watching him. There was no smile for reassurance that I could see through the bipap mask, no jokes, no words of encouragement, or words at all. It was the first time I'd seen him truly sick. The first time he just didn't feel well enough to bring light to the situation. It was the first time I saw that CF could change the game within a split second. It made me realize how much I don't know about CF. It made me understand that it's a very, very serious illness.

That being said, it also made me realize how much of a fighter Ronnie is. Uncomfortable, in pain, uncertain: He just kept on. And as each day passed, he just kept fighting and kept improving. It wasn't long before his reassuring smile was back, his jokes started flowing, and his encouraging words soothed my worried mind. So I guess the best part about the first time CF was real to me, was that I realized no matter how much CF can do, Ronnie will always do more.

Weekend Recap: Planes, Mountains, and Softball Fields

This weekend was relatively uneventful, but the weather was great (well, better than 110) so we spent time outside and enjoyed time together. Here are some pictures and videos to sum up the weekend.

In the mornings, from about 6:30 to 7:30AM, Mckenna and I go to get me coffee. We take it to a canal near our house, and we sit and watch airplanes take off and land at the tiny airport by our house. We also look for fish in the canal and clap for runners and bikers exercising on the canal. It's a great way to get some fresh air and enjoy each other.

This is what it looks and sounds like for the full time we are there...random conversation and a lot of wiggling:




On Saturday afternoon I picked up my parents from the airport and brought them to their house. Since I was up there, I spent the afternoon sans Ronnie and Mckenna and relaxed by the pool after a nice run up the mountain by their house. Can't beat the view from up there!

Ronnie plays in a church softball league on Saturday evening. So Mckenna enjoys her dinner watching the men play softball and then we hurry home to get ready for bed. It is pretty cute to watch her watch her daddy with excitement:

Those were the highlights. We spent time with neighbors on Friday night, but we didn't take any photos. Mckenna LOVES to spend time with their two girls (4 and 2) and we enjoy their company. Saturday was summed up in pictures. And Sunday? Just went to church and after naptime Mckenna and I went swimming up at my parents. We are pretty excited for fall to be here and cooler weather to make it's way to Arizona. I cannot wait to be outside more and more. 

Thankful Thursday: God's Plan & Espresso

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 solid friendships. Lately I have felt really blessed by the incredible friendships we have. Friends who are there through thick and thin. Friends who are always there to listen, share laughs, and even friends that are willing to move furniture for us ;-) I couldn't feel more blessed by the time and advice I get from friends.

I'm thankful for God's plan...even when it's different from mine. I have learned a lot in the last year about God's plan in my life...and just how not in control I am of the bigger picture. Sure I get to pick the color of my car and what I wear to the gym, but any of the bigger life circumstances I feel good about them being in His hands.

I'm thankful for running buddies. Has this one been on my list more than once already? I'm pretty sure I've used it once or twice (but I'm too lazy check right now). I run Sunday, Monday, Wednesday, and Friday with a friend who's grown from an acquaintance to an incredible friendship in the last two years. Running together 4 days a week has only strengthened that bond and is the best way to start my days. It makes running more enjoyable. I run better. And I'm building a lasting friendship...All at the same time. Jackpot!

Ronnie's List:

I'm thankful for a change in our daily routine. For quite some time, I've been taking Mckenna in the mornings while Mandi worked, and we flip-flopped that arraignment in the afternoon. I like this new way for a couple reasons, but one of the biggest is that there is just simply more to do with Mckenna in the afternoon when compared to the morning. We've been going on all kinds of fun adventures lately.

I'm thankful for such a positive reaction to the film Living Xtreme: Beyond Cystic Fibrosis. The whole LX team worked really hard on this film over the past couple of years and we're just thankful that the work is paying off. We of course didn't want to produce something that people didn't like and didn't feel was inspiring.

I'm thankful for stove top espresso. I've been making stove top espresso to start each day, and there's nothing like that first shot before 5am :) I think it sets the tone for the rest of the day!!

What about you? What are you thankful for today?

The Lucky Seven: Intensity Class

I know Mandi and I have mentioned this before, but we do a class at our gym called Intensity every Monday, Wednesday and Friday (and sometimes more if we feel like being mean to ourselves). The class is, well, INTENSE. It is 45 minutes of trying not to barf and doing a variety of lifts, jumps, squats, swings, ups, downs and everything in between. I absolutely love it, here's why:

1. Sweat - Whenever I sweat, it feels like I'm working hard. In this class, I'm drenched with sweat within the first 10 minutes and I drip sweat like a madman for the full 45. There are times when I can actually wring sweat from my shirt.

2. Coaching - There is a personal trainer who runs the class and comes up with a different set of moves each time. He's also there to correct improper form and to motivate you when it feels like you can't push any longer.

3. Variety - Like I said above, the class is always different. It's pretty much impossible to ever get sick of it. Only thing I could get sick of is working so hard!

4. Partner - Having Mandi there with me is awesome. Not only does she motivate me by kicking my butt every class, but she looks super hot doing it. Seriously, you should see her in that class. Rarely is the prettiest girl the most fit one also...and she's my wife! #winning

5. Gym friends - We don't have any actual friends in the class, but we have plenty of gym friends in the class. It's like we're all part of the same team when we see each other in other parts of the gym or outside of the gym in the community.

6. Benefits - I of course like the benefits of kicking my butt. I always have more energy when I work out consistently and I usually sleep better too. My lungs remain clearer longer and I have more capacity when I take deep breaths. And I can tell you one thing, that class forces me to take MANY deep breaths!

7. The End - I like the end of the class for a handful reasons: 1) It's the end of the class 2) I no longer have to work to keep my food down 3) I can catch my breath 4) I can see results 5) I feel a sense of accomplishment 6) Lunch time is coming up next! 7) Recovery

If you're not active in something that gives you a sense of accomplishment and pushes you beyond what you think you can handle, I would highly encourage you to find a class at your local gym. If you have the commitment level and motivation to push yourself that hard, then go for it! I know as for me, I would never, ever push myself as hard as I do on my own, as I do in Intensity.

The (Not So) Terrible Twos

Ahh, "terrible twos." We are creeping up on them. You hear it all the time, but you don't know what to expect. I guess I pictured the scene from The Exorcist where the kid's head is spinning around...and thankfully, we haven't had that unfold in our house (in all honestly, if that did actually happen, I may lock her in a home somewhere because I wouldn't be able to sleep at night). This stage is an interesting, awesome one. It's my favorite yet, and for a former baby person, that's a big statement. Mckenna is becoming more and more independent, which is a big curse but a bigger blessing.

We have all the lovely tantrums that make you so frustrated you want to jump in your car and return in 16 years. Sometimes these tantrums are over something so small, I actually have to keep myself from giggling...which as you can guess, if Mckenna picks up on it, only makes her more angry. We had a 10-minute standoff this morning on the potty because she (for the third time in an hour) said she had to go potty, but as soon as she sat down, she was "all done." She just wanted to take off her own shorts and diaper, and the potty was doing the trick. Well not in my house, sister. So we sat (well I sat, she was held in a sitting position on the john) for 10-minutes while she begged to be all done. I'm not sure who was being more stubborn, me or her, but regardless, it was frustrating. On Friday, she was in her room 3 times before breakfast for various offenses. When she wakes up from her nap, you hear, "knock knock, hello? Mommy, where are you?" in whines over the monitor, but when you excitedly greet her you get a, "bye bye!" in return - followed by 10 minutes of refusing to let you take her out of bed, but whining when you actually say "bye bye" back and walk out of the room. She is becoming her own little person and wants us to know it.

But as frustrating as those times are, I am so thankful that she is becoming expressing who she is, and I'm really excited by the person she is becoming. To say that Mckenna has quite the personality is an understatement. She is playful, excitable, passionate and goofy. She is outgoing, friendly, and engaging. She is smart and athletic. She is loving and compassionate. She is confident. She is bold. She seems to be well-liked wherever she is, by both other kids and by adults (how's that for the most "mom" thought of them all!) She has all the characteristics to be incredibly successful one day...or major trouble in high school ;-) I am so excited to see more and more of who God has made her and who we get to be the parents of. She has all the right ingredients and my prayer is that we can put them all together to create a woman that will make a major impact in this world.

I love that she now speaks in (toddler) sentences so I can begin to see how her brain is working. I love that she tells little crying kids "otay boy" or "otay girl" with a look of compassion on her face. I love that she plans ahead and tells me (after getting in trouble for not listening), "Mckenna listen tomorrow to daddy." (...Ok thanks, that's helpful right now) and that before bed she rattles off the 15 things she wants to do tomorrow..."wake up, Mckenna read book...wake up, Mckenna drink milk...wake up, mckenna gym." I enjoy hearing her predict what she thinks everyone she knows in the universe is doing at that moment...all back, to back, to back (can you tell it drags on?), "Josh working...Chrissy working...Nana home...Papi home...Brock sleeping...Tristan sleeping....Baby Caden sleeping...no Harlow Sad..." and on and on we go. I love that after a fit or crying spell she will inform me, "Mckenna choose happy" (Can you tell we've been drilling happiness as a choice around here? Ha!) I love that she will tell me what to do (albeit, it's rarely effective). Not because I like being bossed around or like that she is being bossy, and certainly not because I like to hear what square inch of floor I'm supposed to sit on or what toy I need to play with, but because I know that if we channel that current bossiness properly, she's just a leader in the making.

We truly are loving this phase, with all of it's ups and downs...so I say, bring on the actual terrible twos!

Thankful Thursday: New Motivation & Dried Mango

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 new motivation. Lately I've been motivated to do more and learn more. I've never been super lazy or just sat around not being driven to do anything, but lately I've been craving growth in my life, and it's been awesome.

I'm thankful for Nordstrom Rack. I bought sneaker at Nordstrom Rack a few weeks back. I have always run in Asics, but I tried running in the shoes (Nikes) and holy cannoli, they feel AWESOME to run in. I'm so thankful for "cheap" sneaks from The Rack and for learning that work (sometimes) better for runs.

I'm thankful for phone calls. I was out of town last weekend and again Wednesday for work. I miss Ronnie and Mckenna while I'm gone, but it is SO nice to be able to get a phone call from Mckenna. She somehow seems SO old when she legit talks to me on the phone. I love it!

Ronnie's List:

I'm thankful for dried mango. Every time I go to Costco, I do my best at not purchasing the large bag of dried mango. Not because I don't love it, but because it's hard for me not to eat the entire bag in one sitting. I've been doing my best portion control with this last bag, but it's still disappearing to fast! 

I'm thankful for sports and fellowship. I recently started playing for my church softball team and it feels good to be active in a sport again. It's been a while since I slapped the leather (in fact, the last time was with another church's softball team) and there is no doubt that I'm a step slower and my reaction time is not what it used to be. It's also amazing how long it takes for my body to recover from games or practices. It's a good pain though, right?

I'm thankful for quite time. My quite time in the morning has been going really great and I absolutely love it. The house is quite. The house is dimly lit. I'm usually the only one breathing in the same room :) There's nothing like peace and quite when you're raising a youngster.

What about you? What are you thankful for today?

Thankful Thursday: "Where are you, Mommy?" & A Recent Connection

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 running buddies. As I blogged about earlier this week, I have been running with a girlfriend and it is one of the best things ever. I have never been so excited to get up and go for a run. Better yet, I got my brother to run with me this morning!! I'm so thankful for quality time spent with friends and family while exercising.

I'm thankful for "where are you." Mckenna makes me laugh by the things she says (sometimes on purpose, sometimes not). My new favorite is when I hear her yelling, "where are you, mommy?" The way she says it warms my heart.

I'm thankful for parents who still love each other. My parents have been married for 30 years, and they still love and enjoy each other. There is no greater blessing than to see my parents so in love after so many years. I'm thankful they have each other.

Ronnie's List:

I'm thankful for a recent connection with a friend from the past. Steve and I have known each other for almost 20 years. We lived together in college and have shared many great memories together. As life moved on, it got in the way, and Steve and I only stayed loosely connected for the past 10 years or so. We knew about all of the BIG things going on in each others life, but didn't take the time to talk about the SMALL stuff. The stuff that holds friendships together. I'm happy to say that we talked about the small stuff today and I'm thankful that we're on our way back to how it used to be. 

I'm thankful for a supportive wife. There isn't much, if anything, that I do in which I don't have the full support of my wife. If she doesn't fully support something that I choose to do, I'm certainly not aware of it :) It's just nice to not have to worry about the person I do life with breathing down my neck and second guessing all of my decisions. I know some marriages live that way - I don't know how they do it.  

I'm thankful for no sugar. I decided that I wasn't going to eat sugar this week (candy or unneeded sweets) to see how it felt. I've got to say, it feels good and I can definitely tell a difference in how I feel and how I look. Not to say I'll never eat candy again (because I will), but it's nice to know I have the will power to do it!

What about you? What are you thankful for today?

Two Important Lessons from My Mother

To say that my mom passed down many lessons to me that carried on throughout my life could be the understatement of the year. I could probably fill an entire book with all of the wisdom that she passed down to me over the years. Little anecdotes and advice that I've drawn from constantly to either get through a certain situation or just draw strength to continue motoring throughout the day. But as I've talked more more about my life with cystic fibrosis, I began to realize two very important lessons that shaped much of my life up until this point.

These two lessons play off each other in perfect harmony. They are:

1.  Not everything bad that happens in my life is a result of having cystic fibrosis.

2.  There are many good things in my life that I may have never experienced if I weren't diagnosed with cystic fibrosis.

Let's look at the first lesson. I don't think it's an overstretch to say we live in a “blame society”. We are always looking for someone else or something else to blame for our set of problems. Whether it's blaming the dog for eating our homework (even though we left it within his reach), blaming our boss for our cruddy job (even though we enter work each day with a chip on our shoulder) or blaming lack of time for not exercising (even though we still get in our 1 to 2 hours of TV a day). It's just so much easier to blame others or some external force for the bad things or bad situations that happen in our lives. It's much tougher to look within, or look into a mirror, and at least partially blame ourselves.

Cystic fibrosis can be the perfect scapegoat. I used to think that there was no way I could ever run any sort of distance because I had cystic fibrosis (even though I had never attempted to train). There are days that I thought I must feel sick because my CF was getting the best of me (even though there was a virus going around at school). I'm sure there were days that I used cystic fibrosis for being the reason that I acted out and didn't have respect for authority (getting to the root of that issue would take years). I'm not so sure I ever verbalized these, or even consciously thought of them, but I wouldn't be surprised if they were at least subconsciously there.

Maybe my mom recognized that. Maybe that's why I vividly remember my mom saying many times, “Cystic fibrosis won't always be the reason that bad things happen. Cystic fibrosis won't always be the reason that you don't get your way. In fact, rarely will cystic fibrosis be the reason. The reason? It's called life and we all are living in the same one."

I'm so thankful that I was able to carry that on to adulthood. There's no doubt that it played an active role in me pursuing to make a positive impact on this world. If I couldn't blame CF, then I was going to use it to motivate me to do good things.

The second lesson plays off this first one perfectly. When I look back I can identify so many things that have happened in my life that would not have happened if I'd never was diagnosed with cystic fibrosis. More importantly, there are tons of people who play a present and active role in my life who I may have not met if it weren't for CF.

My mom would always be quick to remind me when I was a child of this and now as an adult, I can see it clearly. This continues to play out today. I can't count the number of contacts, acquaintances, and friends I have as a result of being a part of the CF community. Diving in and serving the CF community is what I strive to do every single day. I can't imagine myself doing anything else. Would I be doing this without the diagnosis? No way.

The biggest role CF is played in my life is that of a sculptor. I'm convinced now more than ever that cystic fibrosis molded me into the man that I am today. The man that my wife fell in love with. The man that Mckenna calls "daddy". Many out there believe they'd be a different person if they weren't battling CF. I agree, I would be different, and I don't think I would like that different version of me as much. I know that others wouldn't.

And again, to quote my mom, “You can either use CF to hold you back, or to propel you forward.”

I choose the latter. What about you?