Cystic Fibrosis and Relationships: How Do We Communicate?

Guest post by Katie Broekema

Hello everyone! This is Katie, I am back again to tell you what is going on in my life right now. To see some of the lessons I have learned from cystic fibrosis and running, click here.

If you read my bio, you saw that I am currently a graduate student at Central Michigan University. But what my bio does not tell you is the path that I took to get there. I have always thought that school was something to do to get you where you want to go, but when I was a senior in college I realized I had no idea where I wanted to go. I was a computer science and communication major; do not ask me why or how, because I could not tell you. I just fell into both fields thinking I would find what I wanted to do, and then suddenly it was graduation time and I still had no idea. Sometime early in the fall semester I followed my nose to a meeting. I had no idea what was going on, all I knew was that there was Pizza Hut pizza there; I slowly learned it was a graduate communication program recruitment visit from CMU. I figured there was no harm in applying for the program; I was shocked when I was accepted with a graduate assistantship. So I went into this program with the idea that this would buy me 2 more years to discover what I wanted to do. I have just finished my first year of that program, and I now have a totally different attitude. I know what I want to do with the rest of my life! It is thus amazing feeling, like a total sense of euphoria. I actually enjoy reading thousands of article pages: I am looking forward to writing my 150 page thesis. So now you may be asking yourself, what is this magical area of interest? Well I will tell you; it is Cystic Fibrosis.

It started out so innocently; I had to write a class paper so I picked something that I knew about and that I thought would be easy, how people with Cystic Fibrosis communicate. I did this all the time in science classes and when I had to give speeches, why would it not work now? I was duped in this process, but in a good way. Once I began my research, I remembered a conversation that I had several years ago with a high school girl who had Cystic Fibrosis. She asked me how I had told my boyfriend about my Cystic Fibrosis, because she also had Cystic Fibrosis and she wanted to tell this guy but she did not know how. This sparked my interest in how to share Cystic Fibrosis-related information with a significant other, and it is a topic that has become my thesis project. Right now I am in the process of collecting background information and starting the writing process, but as soon as that is done I would like to begin collecting data. This is where all you readers come in; I really want to talk to you and hear your thoughts! I am hoping that by the end of the summer I will be able to start interviewing people. If this is something that you are at all interested in being a part of, please send me an email at Broekema.ka@gmail.com

This initial topic has grown much more than I would have ever imagined. As I was doing my research I realized there is no research connecting communication and Cystic Fibrosis or any other genetic diseases. Having a genetic disease presents a unique set of variables and situations that need to be navigated, but there is lack of research on how this all is communicated. Therefore, I am in the beginning stages of many other research ideas involving Cystic Fibrosis and communication. If you would like to be involved, or if you have another area that you think really needs attention, let me know. My goal with my research is not to do research for research-sake, but for the real application into the lives of people with Cystic Fibrosis. So letting me know what you think is incredibly important and makes what I am doing matter. If you have any ideas, please send me an email. I would love to hear your thoughts and opinions.

Thank you all so much in advance for your help, and thank you Ronnie for letting me share my thoughts in your blog. It was such a great honor to write this for RSBR and this blog is really making a difference in a lot of people’s lives.

BIO: Katie is 22 years old and has lived in Michigan her whole life. She graduated from Albion College with a double major in computer science and communication, and she is currently working on a Master’s degree from Central Michigan University in communication; with a focus on health communication. In her spare time, Katie enjoys finding new research topics, preparing to teach her COM 101 classes, helping coach the local high school cross country and track teams, running, cooking and convincing various family members that they should get her a Pomsky puppy. (Look them up, they are adorable!) She would love to hear back from people who have read her posts, her email is Broekema.ka@gmail.com

Note from Ronnie: I would just like to thank Katie for submitting, not one, but TWO great guest posts. I hope she was able to inspire some of you to get out and get active after reading what she has learned through running with Cystic Fibrosis. Also, anyone who is interested in contributing to her thesis, please email her to "get in on the action". I believe this is a very important topic that needs to be explored and I'm really looking forward to what her research brings forth.

Thankful Thursday: Grandparents & Eagerness

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for my grandparents. I have the most fabulous grandparents in the world. I love chatting with both of them and always enjoy getting to see them. Unfortunately we all live in separate parts of the country, but I absolutely love that we can OovoO and talk via phone.

I'm thankful for a selfless husband. He's selfless each and every day...but yesterday, he did what no man has done before. I had to work in the morning in Tucson, so I couldn't go to our normal Intensity class at the gym, so he went without me. It was a day we did partner stuff, and he was alone, so it was WAY harder. So what did he do? When I went to the afternoon class HE WENT WITH ME...just so I'd have a partner. I nearly wanted to die after doing that workout, I have NO clue why he opted to do it again...just because he loves me! What a good man!

I'm thankful for good girlfriends. I have some great girlfriends. One of which lives here, Angie, and we get together for playdates, coffee, pedicures, you name it. Having a girlfriend to do life with is such a blessing. Angie is such a strong, fun, woman, and I am so blessed to have her to bounce things off of, especially mommy/kid issues. She's such a good mom that I respect and will always take her advice. I had the joy of watching her two little girls (One's almost 2 and one's 2 months) this week, and I can say, I love those little ladies like my own. Mckenna and I are blessed with such great playmates.

Ronnie's List:

I'm thankful for the gym childcare. It's so nice to be able to workout whenever we'd like thanks to the great childcare system at our gym. It's also heartwarming to see Mckenna making little friends at the gym. One of her favorites is actually the older daughter of a woman who works at the gym. During the summer, her daughter is there often and Mckenna loves to play with her!

I'm thankful for the opportunity to be involved with another clinical trial. This particular trial is one that many with my mutation (DDF508) have really been looking forward to based on the results of the Phase II trial. Just a few pills in the morning and a few pills at night and your done. Hope I can snag the real thing!!

I'm thankful for a daughter so eager to help. I had to fix a hose earlier this morning during my time with Mckenna, and she was super excited to take on the project. The sprayer become totally stuck on the end of the hose and I was trying to crank it loose using some grips and various wrenches. When I would take a break, Mckenna would pick up right where I left off and try to loosen the sprayer herself; It was so cute!

So, what are you thankful for today?

Growing Up Fit

Every parent knows that they are a role model for their kids - good or bad. I have quickly learned that what I do has much greater influence than what I say. A perfect example is how I treat our dog. I tell Mckenna to be gentle, and she is, usually, but when our dog or parent's dog puts their nose up to her tray while she's eating, she pushes them away swiftly...just like I do...and says, "NO"...just like I do. Monkey see, monkey do. I have quickly realized that what they say is true, Mckenna is watching my every move and modeling it in every aspect of life...including exercise.

The APA (American Psychological Association) says this:

You are role models

• Children are instinctively primed to imitate their parents and caregivers. They are incredibly sensitive to the messages that are sent about eating and exercise. You exert the most influence on your children’s behavior and can model healthy attitudes and habits toward food and physical activity that persist as they grow up.

And what's crazy, is I've already noticed this, just as 20 months of age. Mckenna is currently being influenced to exercise, and I think it may be one of the greatest gifts we can give her as her parents. She has recently done some things that makes me realize, quickly, that she is watching how we are behaving and modeling it.

Mckenna has recently decided that instead of riding in the stroller to the park on our morning park trip, she'd like to walk the .25 miles there, and .25 miles back (step one). And then, the other day on our way there, she insisted on running instead of walking. Now many of you may say, "Yes, she's a toddler, they do that." But it wasn't just the fact she opted to run. It was the fact that while she was running, she pointed out that she was running like mommy and daddy. BINGO. In that moment I realized that she was my little sponge every day on our run/walks in the stroller together. She was watching me, even though she couldn't really see me pushing her. She knew mommy was running, and now that she was out of the stroller, she wanted to run too. I have to say, I was so proud. It's so silly, but I felt a new sense of purpose in my exercise.

Another example is when we were staying at my parents while Ronnie was in for a tune-up. One day, I didn't have time to get to the gym, so I was in their garage lifting weights. While I lifted, so did Mckenna, without me saying a word at first. She imitated my moves. I squatted holding weights. She squatted holding a little metal thing. I curled holding a barbell, she curled holding some random metal bar. As I counted out loud...1...2...3...there went her little tushy up and down, up and down. 

And there I was "lifting weights"with my toddler. But you know what I flashed back to? Lifting weights with my dad, in our basement, as a toddler. My brother and I used to fashion all sorts of equipment to do the same exercises as our dad. We used Fisher Price chairs to hold a weight-less barbell while we laid under it to bench press, we used little things as dumb bells. You name it. It's the same brother that I lifted with at 4:30 in the morning with before work. The same brother who, with our spouses, belong to my same gym, and we take classes together. My same brother that is an avid exerciser himself, two decades after lifting with me in our basement...just like our daddy. Both children still carrying on their parents' examples.

Exercise can be a lasting legacy you leave for your family. There are many legacies I want to leave for my family and to be fit and healthy is one of them. I pray that Mckenna can know what it means to be healthy, to set goals, to get outside and play...as a child and adult. I know that if I tell my kids to go out and play during the summer (which in AZ, is HOT), and they tell me it's too hot, that they will have no leg to stand on because I will be outside myself, exercising and playing...and will have their whole life. And better yet, I may not have to tell them at all because, hopefully, it will be through our actions as parents, and not only our (nagging) words, that they will instinctually just know they should be outside and playing.

Are you leading by example?

My Daily Bread

It's almost embarrassing to say this, but it's probably been at least a year since I've carved out time in my schedule to dive into the Word. Yeah, I read a handful of daily devotionals each day, but it's been quite a while since I've read the Word of God each day. Like many things, my alone time with God would come and go - On one day, off two; On three days; off four. One thing is for sure - I wasn't showing with my time how important the Word of God is to me and how I earnestly try to apply it to my life.

It seems I've been much better at carving out time for work, exercise, treatments, Mckenna, Mandi etc (which, please understand, those are all important), but developing my walk with Christ was more of a "hopefully I get around to it" kind of a thing.

Well, that changes now!

I finally realized that the key to my personal time with God was to treat it more of the way I treat exercise, and that is, knock it out sooner rather than later. With exercise, I'm MUCH better at getting to the gym 6 days a week, if I go to the gym sometime before noon. After noon most days, I start to feel a little more lethargic and the last thing I want to do is bust my booty in the gym. I thought, if that works for exercise, it must work for God, right?? ;)

Starting yesterday, I'll be setting my alarm for 4:45am and spending my first waking hour with God. This move mind you is WAY overdue.

As I've gotten older, I've become much better at allocating my time to the things that are truly important in my life, and this is probably the last stone that was left unturned. I can't tell you exactly why it took this long, but maybe through some Scripture reading I'll figure that out. Ha.

Anyway, please pray for me as I form this much-needed habit. Pray for strength, purpose and clarity in the morning...oh, and pray that my coffee maker doesn't break ;)

Happy (Belated) Father's Day

Happy (belated) Father's Day to the two great dads in my life: my dad and Ronnie. Mckenna and I were/are both blessed with two incredible men as our father's (respectively).

I grew up with an incredible dad. He's taught me so much over the course of my life. He has always been firm and loving in a way that is so unique to him. He has always been there for me. He has loved me unconditionally, correcting my errors and providing guidance, but loving me all the way through. I wasn't the easiest kid, so the patience and love he showed wasn't always easy. He has taught me that it is important to be moral and do what's right, in all situations. I have a few very distinct memories of my dad, the first is stopping with him to get gas and always getting some candy to share. The second is snuggling with him. In the middle of the night, if I got up and went into my parent's room, my mom was a zombie and often wasn't receptive to having me crawl into their bed. My dad on the other hand, would just lift up the covers and have my crawl into the middle, where he'd snuggle me tight. I always felt so safe sleeping like that. The next distinct memory is how he'd always "sneak" me food. When he'd come to tuck me in at night, he'd often be munching on saltines or popcorn or something of the sort. He'd often "sneak" me a bite or two, and I always thought I was getting away with something. The next is the way he would hold my hand in the car. Not always, but frequently. In high school and college and beyond, he'd grab my hand in the car. On my way to our wedding, my dad and I rode together, just the two of us, and he held my hand. He's always held my hand in life, so the metaphor was perfect. And before my dad handed me off to the future father of my children, I distinctively remember being alone with my dad. Everyone else was outside, sitting in their chairs, waiting for the ceremony to begin. The precession was going on. We were all that was left. With a few words of advice, in his typical way, my teary-eyed dad stood with me until the doors open, and I made my way to my groom.

It turns out, I married my father (in many ways). They are both loving in similar ways. Neither are overly sappy, and both like to show their love more than express it with words. They both let you know they care, usually by joking with you and messing with you. Their sense of humor is very similar, and I am certain God prepared me for a lifetime with Ronnie, by beginning my life with my dad. I know with my whole heart that Mckenna loves and cherishes her daddy by the way she looks at him now, but I can also predict what they will be like in 25 years from now because they will be just like me and my dad. Mckenna is so blessed to have a daddy like Ronnie. He is so loving, yet so firm. I watch him parent her, with respect and admiration. We are different as parents at times, but I watch him and think, "man, I hope I can be that good in that kind of situation." Ronnie is the man I have always prayed for, and a man Mckenna will always thank God for him in the future. We are so blessed to have him in our lives.

We celebrated, but nothing over the top (just as Ronnie prefers things). Mckenna and I got heart felt gifts. I looked for crafty gift ideas on Pinterest, and most required me to do most of the work...and that doesn't seem to make sense. So I found a gift Mckenna could "make" (shoot, I think a monkey could have made it). We went and collected rocks and put them into a mason jar, and then I made a little tag that said, "My daddy rocks." Got the job done, and was made by Mckenna for her daddy! She was pretty excited about it too. When I told her to pick out the prettiest rocks for a present for daddy, she kept repeating that they were for daddy and excitedly picked them out. Her standard for "prettiest" was pretty low, as she just took handfuls, but hey, it's a strength to see the beauty in everything, right? Ha! As for my gift for Ronnie, it was practical. I usually would spoil him with his favorite candies, but he's on a diet, so I spoiled him with what he had just mentioned he wanted/needed more of...mustard and apples (not to eat together). Yup, nothing says happy father's day like mustard and apples! As you can see, we are not overly extravagant in our celebrations, but we made sure daddy knew he was loved and appreciated, and loved and appreciated he is. I could not think of a more selfless, patient, loving and impressive daddy. If I can be half the parent he is, Mckenna is going to turn out incredibly.

Thank you, God, for blessing me with an incredible dad, and for blessing my child with an incredible dad.