Saturday, October 26, 2013

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:

Thursday, October 24, 2013

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?

Tuesday, October 22, 2013

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. 


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!"?


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.


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 (!