The Meaning of Marriage

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This past month of marriage has been so sweet. I have honestly really loved being with my best friend every day. I love waking up with him, coming home to him, and the precious moments throughout each day. It is so much fun being married to Jason. We have discovered new things about each other: Jason is a light sleeper. I apparently hit the snooze button too many times. Jason talks a lot more than I thought he did. I am really bad at leaving the clean laundry in the laundry basket all week.

I have also learned how sinful and selfish I am. Granted, I was already learning this while we were engaged, but it is really coming out now! Today at lunch, I told Jason how I wish I could have a more Christ-like attitude like he does. Jason is so selfless, so patient, extremely kind, and very forgiving. 98% of the time. Then I thought about all the times that I am not selfless, patient, kind or forgiving, and realized it’s a lot more than 2% of the time that I act this way. I want to be more like Jason. But ultimately, I desire to be more like Christ.

During our last month or so of engagement, Jason and I met with our officiant/college pastor and his wife a couple of times for pre-marital counseling. We had already done the typical “Prepare and Enrich” pre-marital counseling with one of my home church’s pastors and family friend, so we read “Sacred Marriage”  by Gary Thomas. It was so good. I had never read anything like it!

How many times do you hear people say, “If only I was married, then I could be happy.”? They could replace the word “marriage” with anything-rich, healthy, had kids, prettier, etc. The list could go on and on.

One thing that Jason and I learned during our first pre-marital counseling session is that Jason is an idealist and I am very much a realist. I am extremely realistic about things. Jason is as well, just not as much as I am. I’ve always known that marriage would be hard. I never thought it would easy. Thankfully, I had a great model of what marriage would be like living with my parents for 23 years. They just celebrated 26 years of marriage! Living with them, I saw how fun and exciting marriage could be. But I was also able to see how trying marriage could be. That’s not to say anything about my parents-they love each other so much and have worked hard to make these last 26 years something worth celebrating. No marriage is perfect. They all take hard work.

So I knew that marriage would be hard with my own husband. But what hadn’t really been put into perspective for me was why marriage would be hard.

Marriage is not designed for us to be happy. It’s not designed for us to procreate. Yes, happiness, pleasure and procreation are gifts from God IN marriage, but that’s not why we get married.

The question that Gary Thomas asks is, “What if God designed marriage to make us holy, more than to make us happy?”

I knew that marriage mirrors God’s covenant relationship with us, his people. It’s a beautiful picture of unconditional love and extreme sacrifice.

But why?

Gary Thomas explains it like this, “The first purpose in marriage is to please God.” He goes on to say, “The challenge, of course, is that it is utterly selfless living; rather than asking, ‘What will make me happy?’ we are told that we must ask, ‘What will make God happy?’…Just as Jesus went to the cross, so I must go to the cross, always considering myself as carrying around ‘the death of Jesus’ so that his new life-his motivations, his purposes, his favor-might dominate in everything I do”.

Wow. So what would make God happy in my marriage? Gary Thomas gives this explanation: “We show our love for God in party by loving our spouses well. And we love our spouses by loving God”. The thought that God wants me to serve him by concentrating on making my husband happy is amazing. Making Jason happy makes God happy-that is such a cool perspective on marriage!

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Emily Koontz Photo

So what if Jason is difficult to love at times? Well that’s what marriage is for-to teach us how to love. One of my favorite quotes from “Sacred Marriage” is this one by Gary Thomas, “The more difficult your spouse is, the more opportunities you have to love”.

I could literally go on and on all day about how awesome this book is and how wonderful the true meaning of marriage is. I really could. But you probably wouldn’t read the whole post. So I encourage you to read “Sacred Marriage” by Gary Thomas. I also encourage you to read “The First 90 Days of Marriage” by Eric and Leslie Ludy (my favorite authors); I read this book over the course of our honeymoon and absolutely loved it!

I am currently trying to get my hands on the book “The Meaning of Marriage” by Tim Keller. Last week during our Newlyweds/Engaged Sunday School class, we talked about the meaning of marriage and one of our teachers gave us some quotes from the book. One of them is this, “The reason that marriage is so painful and yet wonderful is because it is a reflection of the gospel, which is painful and wonderful at once. The gospel is this: We are more sinful and flawed in ourselves than we ever dared believe, yet at the very same time we are more loved and accepted in Jesus Christ than we ever dared hope…Love without truth is sentimentality; it supports and affirms us but keeps us in denial about our flaws. Truth without love is harshness; it gives us information but in such a way that we cannot really hear it. God’s saving love in Christ, however, is marked by both radical truthfulness about who we are and yet also radical, unconditional commitment to us.”

Does that inspire you or what? I am amazed at the love God has for us. It inspires me to love my spouse more and more each day.

So going back to how I desire to be more like Jesus ultimately, here is one last quote from Gary Thomas that gives me hope to developing a godly character and becoming the wife I feel Jason so richly deserves, “Marriage helps us to develop the character of God himself as we stick with our spouses through good times and bad. Every wedding gives birth to a new history, a new beginning. The spiritual meaning of marriage is found in maintaining that history together…The stronger we grow as spouses, persevering and pressing further into our marriage, the more we’ll develop the very character traits we need to become mature believers. Growing in our marriages, then, can build up our faith, even as growing in our faith will build our marriages. It’s a wonderful circle of spiritual life!”

I pray that my marriage to Jason brings so much joy to God. I pray that when my flesh tries to tell me something is okay in my marriage, that I learn to desperately seek what the Word of God tells me is actually okay. That when I don’t feel like loving Jason as I should, that I choose to love him anyway-because that brings honor to my heavenly Father. I pray that I seek God first as my First Love and that He is constantly at the center of mine and Jason’s marriage relationship. I pray that Jason and I can spread the gospel by continuing to choose to love each other through good times and bad.

I pray that you will seek the same thing for your own marriage.

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Disobedience Has a Price

Just a few days ago, I got an email from a casting company based in New York City. They contacted me asking if I wanted to be involved in a documentary project about people living with cystic fibrosis. I filled out the questionnaire, and actually had a skype “audition” the other day.

I wasn’t sure what to expect with the audition. But the woman I skyped with was extremely nice. She asked me basically just to tell her my story living with CF. So that’s what I did.

I started from when I was diagnosed at 11 months. I continued with how I grew up healthy-my lung function mainly stayed above 100% and I was not in the hospital after 5 years old.

Until my Freshman year of high school.

I explained to her that I was a typical stubborn teenager and I wanted to be “normal”. No one else had to take pills before they ate or had to wake up an hour earlier just to do treatments and take extra pills. So I stopped.

Then I started to cough. A lot. I was not used to that, but I didn’t care.

I started hiding pills behind my bed and the refrigerator. I washed out my nebulizers to trick my parents into thinking I had done my treatments, but I really hadn’t.

I wasted money. I let my lung function decline.I hurt my parents.

My parents tried to tell me so many times. My mom initially tried to make me realize the damage I was doing, but eventually, it came to down her begging me to do my treatments and take my pills. But my stubborn butt said no. I didn’t care what my parents told me. I didn’t care what my doctors told me- that my lung function would decline, I would need a lung transplant, and I was putting myself at risk of dying an early death.

Jessica, the lady that auditioned me, asked me, “What would you have told your younger self now that you know what you should have been doing?”

I didn’t even have to think about it.

“I would have told myself to grow up.”

I had so much pride that I was putting myself in danger. I wish I had known that it was time to just grow up, be mature, and do what was right for myself.

I’m so thankful that God worked on my heart and changed my attitude and perspective. He showed me that I had two choices: to not do my treatments and die, or do what I was supposed to and live the “normal” life I so desperately desired. So I chose the latter.

Do I regret it?

NO.

I’m getting married in 3 weeks. I have a wonderful, supportive family and fiance. I have the cutest dog. I’m pursuing my dream career as a registered dietitian. I’m active in the CF Foundation, which means I’m helping others living with this disease. This is my life. This is the life I get to live because I chose to grow up and listen to those that care about me.

I know this post was a little different from other ones, but I just felt like I really needed to share what God has laid on my heart. I’m so grateful for my support system. I’m grateful that they push me when I need to be pushed, and love me no matter what.

Disobedience has a price. Remember that.

A Reason to Smile

The house Jason and I will be living in (in  LESS THAN ONE MONTH OMG) is under construction as my parents are graciously re-doing both bathrooms, the laundry room, some of the hallways, and the master bedroom. Wedding stuff seems to be flowing from my ears. Stress and anxiety are higher as we get closer to August 6th, but the joy is escalating as well.

Yesterday, my sweet friend Hannah Holder and my MOH (Karli), along with my other bridesmaids, put together and threw me the best bachelorette party! We went to dinner at one of my favorite Mexican Restaurants and took a silks class. None of us had ever done a silks class before, but we loved it! Yes, every part of me is sore today, but I’m going back! The girls came back to my future house (Jason spent the night with the guys and graciously let us girls have the house) and we had the lingerie shower portion of the evening. We played games and a few of the girls stayed the night. It was the best “fling before the ring” I could have asked for!

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As you can see, I am concentrating really hard to get this pose right.

As the wedding day gets closer, I am slowly becoming more aware that my time living at home with my parents and sister is coming to an end. In 26 days.

I’ve lived at home my entire life-for 23 years! I don’t know anything else. I don’t know how to live with anyone else. It’s honestly a scary thought for me.

I’ve started thinking of all the things I will miss…

Coming home and telling my mom about my day. Seeing my dad in the living room on his iPad and watching TV. The dogs greeting me at the door with their noses pressed against my legs wondering where I have been. Sharing a bathroom with Karli (just kidding. I won’t miss this).

I honestly think the hardest part will be not having my own space anymore.

Karli and I have never shared a room. If we had, one of us would not be alive right now, I’m sure of that. Yes, Karli and I have enjoyed several sleepovers in one anothers’ room, but we are both complete opposites and would have fought even more than we did! So I have always had the luxury of going to my room whenever I needed to get away. But now, I’ll be living with a boy…and sharing a room with said boy. The thought is unappealing, if I’m being honest.

Of course I love Jason and I am SO excited to be marrying him, but he is really not the most organized person in the world (Jason don’t hate me 🙂 ). I’m sure many wives can relate. The laundry basket seems to go unnoticed. There are many, many hairs in the sink leftover from the morning shave. You come home to a stench that makes your nose hairs cringe and find there is leftover food in the sink that has started to mold.

I’m sure there are many more. But since I’m not living with my man yet, these are just the few I have experienced.

Don’t get me wrong-I have my flaws too! I take up most of the bathroom counter. I need the entire closet for myself, I already know. I leave things plugged in even when I’m not using them (this annoys Jason, who likes to save money-one of the many reasons why I love him!). I probably have many other flaws and Jason is just nice enough not to tell me what they are. Or he hasn’t figured them out yet, lol.

Yes, I’m sure having a roommate will be loads of fun. I say that sarcastically, but also, I think it will be the reality.

Sure, Jason is messy and doesn’t keep things maybe as clean as I would like them. But let me tell you something about my future husband. He is the most selfless, serving and sacrificial man you will ever meet.

I came home last week from Fort Worth for my doctor appointment (all good news by the way), and Jason and I had had a “talk” about keeping the house clean before I left. Well I came over that night to find most of the house had been cleaned. Dishes were done, candles were lit (my fave) and dinner was made. Y’all. This man LOVES me.

Not only does he work hard to keep the house clean, but every week, he is outside doing yard work to keep our front and backyard looking perfect. He mows, weed-eats, edges, and waters the grass and plants.

I’ve grown up watching my dad do all of this, but didn’t realize how much it would mean to me as a (future) wife. Jason loves well. He is always seeking for ways to love me, serve me and respect me.

**Side Note: Jason cooks dinner for me every night. Literally. Every. Night. God bless him.

I will miss being at home with my family. I’ll miss living across the hall from Karli and going to her room for one of our late-night talks, or letting her talk me into a Starbucks run. I’ll miss everything about my home.

But my new home awaits. So maybe Jason is messy. But I love him. I hope I can love him and serve him the way he does me. Y’all, he is going to make the best husband. Maybe having Jason as a roommate won’t be so bad. I’m learning that, instead of focusing on the negative “what could be’s”, I should focus on the positives. It might give me a new reason to smile.

When CF Has Limitations

It’s hard to believe it has been a little over two months since I have written. A few days ago, I realized that I really needed to sit down and write. Since I last wrote in March, I turned 23 in April and started my dietetic internship full time. It has been quite the journey! Jason and I also adopted a sweet, sweet Chihuahua/Rat Terrier mix just a few days before my birthday in April. We named her Meredith, after one of my favorite characters from Grey’s Anatomy. When she is in trouble, her name is Meredith Ann. She loves to cuddle, run circles, and give kisses! We love her deeply. I just wanted to touch on what has been going on in my life recently.

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June 6th, coming up in about a week, will mark two months until I marry my fiance! Jason just graduated last weekend with his bachelor’s degree in Mechanical Engineering. He graduated Summa Cum Laude (4.0 GPA) and with honors. I am immensely proud of him! He started at Parkhill Smith and Cooper this past Monday full time as an engineer. So far I think he is enjoying it!

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Speaking of Jason and the wedding, one of the local news stations here in Lubbock asked to do a story on Jason and I. Jason’s dad is the chief meteorologist at KCBD, and he started getting one of the anchors interested in our story. Karin McKay contacted me in April about the story, and she came to film early May. The story turned out great, and really made me cry! We are so thankful for the opportunity to share the story of our relationship and my story with CF. It is an honor to give hope to others living with CF and raise awareness for the disease as well. You can watch the story here.

Just a couple of days ago, I got a phone call from the Cystic Fibrosis Foundation. They have asked me to serve on a committee for a pilot mentor program for adults with CF. I will be a part of “practicing” as a mentor for other adults with CF who may have questions or need someone to talk to. They will specifically be sent to me if they have any questions or concerns about feeding tubes, which is my specialty! I am so excited, and so honored to be a part of this! They hope to make the program available to all adults with CF at the one-year mark. Such a cool opportunity and I can’t wait to share more about it!

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A few member of Team Jordan at the CF Walk this year!

Speaking of the CF Foundation, if you didn’t already know, they asked me to write a blog for them that was published in March. The CFF also came down from Maryland and produced a video on my story living with CF and the feeding tube. You can find the link to the blog post here, and the link to the CF Video here. It seems the media really loves me, but I’m not sure why!

Like I mentioned at the beginning of this post, it’s just two months until Jason and I are married. We are SO excited, as we have already been engaged ten months. It’s both a blessing and a curse to have a year-long engagement. It has rarely been stressful with planning, but we are just ready to be married at this point. I’m at the point where I don’t really care about too many things regarding the wedding anymore. I have an opinion on some things that are important, but for the most part, I’m telling people to just do whatever! All that matters is that I’m getting married to the man of my dreams. The Lord is so good and so faithful to be giving me this!

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On this note, it’s time to get a little personal.

They say right after you get married, people start asking about kids. If you have known me for a long time, you know that I have wanted to eventually become a mom since I was a little girl. I used to play “house” with my younger sister almost every day. I would dress her up in diapers, and make her be my little baby. She didn’t enjoy it, but I sure did! When people asked me what I wanted to be when I grew up, I would tell them I wanted to be a mom (and a teacher at that point).

When I was in high school, I struggled with the desire to marry and raise a family. I feared I would not live long enough to do so. But the Lord slowly worked on my heart, and I began to overcome that fear. Then I met Jason!

I posted a few months ago about talking to my doctor about birth control. It was decided that I would get off of Orkambi so I could be on the pill. So I visited my lovely lady doctor about two months ago and started birth control. Since then, the Lord has been doing something in my heart and in my mind.

Recently, as I have been preparing for marriage and have started birth control, I have received a lot of advice and heard a lot of stories from other women about sex, birth control, and pregnancy. It really got me thinking. Hard.

I began to think of all of the things that could go wrong with pregnancy. Living with CF, my little body can handle a lot, but not too much. I have learned that pregnancy can do many things to a woman’s body, and a lot of the time, these things aren’t fun or easy to deal with (I’m sure all the moms out there can attest to this!). So I began to do a lot of research, thinking, and a lot of praying.

I started talking to Jason about my thoughts as well, just so he would know what was going through my mind.

I started to think that it would be selfish of me to become pregnant. I want so badly to have kids, and to have them look like me. I want them to have Jason’s nose and my eyes.I want them to laugh like me, and to have Jason’s calm, endearing personality.

But I also want to live long enough to see my kids grow up and reach new milestones. I do not want to put my babies in danger, just because I chose to carry them. Living with CF and having a lower BMI can hinder my ability to carry healthy babies and be a healthy mom. I do realize that there are a lot of women with CF who have children and are perfectly healthy. I have talked to my doctor about this previously, and he sees no problem with me having kids in the future.

So I kept praying.

Jason and I talked about it, and I asked him how he would feel about adoption. Jason smiled as he took my hand and kissed it. He was all for it.

Let me just point out, Jason and I do not want children right after we are married. We want to just enjoy being married and being together. But I think it is so important to talk about these things now-especially before marriage!

Now that I have had adoption on my mind, it seems to be showing up in my every day life more often. I see moms with adopted children when I’m out shopping; I see stories of adoption on Facebook and social media; it’s even mentioned on television shows I watch. Just the other night, Jason and I were discussing this topic on the way to some friends’ going-away party. Not 30 minutes after we had arrived, a young couple arrived with their three children they had just adopted not long ago. Jason and I looked at each other in disbelief. Could this be what the Lord wants for us? We believe it is.

Jason and I have made the decision to trust the Lord on this and see where He leads us. We aren’t in any rush! But we both have a huge heart for children. I’ve had a heart for adoption since I wanted to be a mom as a little girl. I never thought it would be something that I would really be thinking about. Sitting here writing about this, I am in tears.

I am struggling with the thought of not having my own children. I am honestly very sad. It is so easy for someone that is fighting CF to say that, “CF has no limits”. I say it all the time. But in reality, there may be some limits, depending on the person and their situation. For me, this is one of my limits.

But you know what? I am okay with that. Thinking of adoption brings so much joy to my heart! Jason and I are excited for what the future holds for us. My parents and my sister have been very supportive of this decision, and they know what it means to me. Adoption is so sweet, and such an amazing gift from God. To me, adoption is a story of redemption. The Lord has rescued me from the dirty path of sin, and has adopted me as His own. Jason and I hope to bring joy to a little boy or girl one day in that same way.

I hope that you will join Jason, my family and I in prayer, as this decision was not easy and is still difficult.We welcome any encouragement you may have, even though children are a ways off for us. Pray for wisdom and guidance, and that our hearts will be ready for what the Lord has for us as we begin married life in August and for forever! We are so grateful for our wonderful support system. Thank you in advance!

 

CF Care Clinic Update

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It’s time for an update! I had my CF care clinic visit Wednesday, the 16th. Unfortunately, Jason is on a mission trip this week, so he couldn’t come with me. I was bummed, but I guess it’s okay 🙂 So my mom and sister and I made it a girl’s trip!

We drove down Wednesday morning and arrived just in time for some lunch before getting to Cook’s. They normally have my yearly appointment in the summer, but they surprised me and made this appointment my yearly! So basically that means that I would see more people and do a couple more tests than normal, so the appointment would also last longer. Oh joy!

So first thing’s first: a chest X-ray. It was pretty simple. I know the procedure by now, so I’m normally in and out in 5 minutes.

Then we headed upstairs to the pulmonary floor.

When I was finally called back, they took my vitals like normal. I was so sure that I had lost weight, but I stepped on the scale and I was 114 pounds! That’s 3 more than last time-I was really surprised! I know my body pretty well, but my mom and I talked and thought maybe I did lose weight, but since I started working out in January and gaining muscle mass, the extra few pounds could be related to that. But I’ll take it! My oxygen was really good as well.

In my room, I waited by myself for just a few minutes before heading to do my PFT’s. At my yearly appointments, I do my normal PFT test, then a nebulizer treatment, then another set of PFT’s to see if it changes. So my first set, my highest number was 97%. My second set after the nebulizer treatment was 96%-so not much of a change at all, and this is a good thing! It means my lungs are working 🙂

Once I was back in my room, Candace, my nurse came in to ask me all of the standard questions about my meds, how I’ve been feeling, etc. As soon as she was done, Rachel, my dietitian, came in. I had requested to talk to her specifically because I have been looking into trying Real Food Blends (RFB).

Don’t get me wrong- I love my Nutren 2.0 formula-but it’s got some ingredients in it that I’d rather not put a high dose of into my body every night. So Real Food Blends are exactly what they sound like-real food for people with feeding tubes, just in a blenderized form! It’s 100% real food: no preservatives or corn syrup- two things most formulas (like Nutren 2.0) have. I believe people do better and feel better on real, healthier foods. Again, not that Nutren 2.0 hasn’t been a real lifesaver, but real food is always better if it can be tolerated!

So anyway, Rachel and I talked about what it would take to do the RFBs. Turns out, it’s going to be pretty complicated. In order to get enough nutrients that I get with the 3 cans of Nutren 2.0 that I do every night, we will have to do a combination of things. I’ll continue to do 2 cans of Nutren 2.0 mixed with 1 package of RFB, 1 packet of beneprotein to add protein and some calories, and 1 tablespoon of coconut oil for additional fat and calories. So hopefully we can everything ordered and in place pretty soon!

The social worker also came in to speak with me, but we did not have much to talk about. The research coordinator, who I met at my last visit, came to talk to me about a new study they were doing that I qualified for. Basically, they were studying a new anti-inflammatory drug, which would be very helpful for patients with CF. But, it requires participants to come to the clinic once a month, and that is not possible for me right now in my dietetic internship.

Finally, the doctor came in. Dr. Burk was not there that day, so I saw one of his partners-Dr. Rosenblatt. He was a friendly, older gentleman, and reminded me of Mr. Rogers. Because I had never met this doctor before, we went through a brief medical history and he had some questions on why I didn’t do one of my treatments more than once a day like it I’m supposed to. But when I told him that once a day is all I can make time for and that my lung function is at 97%, he didn’t care too much after that.

If you remember from my last appointment, something that I had talked to Dr. Burk about was stopping the Orkambi medication so I could start on “the pill” to help with menstrual regularity and because I’m not looking to have any babies as soon as Jason and I are married 🙂 Dr. Burk thought I was being very proactive, but wanted me to wait to start on birth control until after I had been off of Orkambi for a few months to see how my lung function survived. Dr. Rosenblatt had a different opinion… but I stuck to my guns, told him what I wanted, and assured him that if my lung function declined to the point that I needed Orkambi, I would get on it. He seemed okay with that, so we moved on. But I got the green light for birth control and I was happy about that.

He asked how many times I exercise each week and what I do when I exercise. When I told him I had to stop doing cardio because it makes my right hip hurt too much (to the point it’s hard to walk on it), he decided I should get a hip X-ray to make sure there is nothing there. So that will be scheduled in Lubbock most likely sometime next week. If there is nothing on the X-ray, he advised me to see a sports medicine orthopedist to see what’s going on, because cardio is good for my lungs. So I guess I’m looking forward to that…

After we had finished, my throat was swabbed, and I was free to go down to the lab for my blood draw. Oh joy.

But praise the Lord because the wonderful phlebotomist drew lots of blood with one quick stick and I don’t even have a bruise! Hopefully we will know those results by next week as well.

So overall? It was a fantastic appointment and everyone was very happy-including my dietitian, who had originally wanted me to be at 120 pounds by this appointment! I’m very happy with my weight and I feel pretty good most days. I’ve got 4 1/2 more months until my wedding day, so there is a lot of planning going on! Thankfully it’s not stressful, and I’m learning to cherish these moments, even though Jason and I are just ready to be married at this point. Patience is a virtue!

The CF Coffee Shop…Part 1

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Currently, I’m laying in bed with my hot cup of tea. It’s not coffee, but it’s decaf so I can sleep. My sister had this great idea of starting a “Coffee Shop Series”. When I feel inspired, I will add to the series. So welcome to the CF Coffee Shop…Part one!

It’s been a while since I have written a truly personal post. Yes, I’ve told you all of the details about each of my CF care appointments, but sometimes I just need to write about what I’ve been thinking about and what has been going through my mind. Recently,cystic fibrosis has been on my mind quite often. A few weeks ago, I was contacted about something very exciting related to my story with cystic fibrosis. But, I’m keeping it a surprise just a little while longer until I get more information… It’s been so hard keeping this a secret!

One of the graduate classes I am taking this semester has also increased how much I think about CF. This class is all about the gastrointestinal (GI) system-which I find truly fascinating. For our final project, we are making up a case study to present to our classmates. Which GI-related disease did I choose? You guessed it-cystic fibrosis.

I find it so important to increase others’ awareness about CF and the nutritional complications that surround this disease. Who knows, the others in my class may wind up working with CF patients one day!

It seems that CF has just been on my mind more often than not. Most of the time, it’s a good thing and it does not bother me to think about it. I am constantly looking at the CF Foundation’s Facebook page for new updates and blog posts from other CFer’s out there. I’m getting emails and updates about the CF Great Strides walk coming up in May of this year. I have also had many opportunities recently to share my tale of living with CF and my feeding tube and I get asked so many questions-all of which I am more than happy to answer! CF isn’t going away.

More recently though, as of just a few hours ago, death has also been on my mind.

Have you ever noticed, that when things seem to be going well for you and all is good, somehow Satan sneaks in streaks of bad. He leaves a trail wherever He has been…Thankfully, I can sense Him most of the time.

Things have been going so well for me lately-I’ve been feeling great, I go to the gym 4-5 times a week now, I’m gaining weight, I’m sharing my story, I’m raising awareness, I’m getting married in 5 months (omg omg omg omg!!), and I’m really enjoying my job and my internship (started my first rotation this week-woohoo!). But Satan has stepped in and has made me think of death. Ugh.

Earlier this evening, I read a blog about the importance of a positive attitude when living with cystic fibrosis (or any affliction really). I shared this blog post on my Facebook page, and you can read it Here.

Everything this young woman shared, I completely agreed with. In my opinion, having a positive attitude while living with this chronic illness is half the battle. If you know my story (and if you don’t, feel free to read any of my previous posts-it’s in there somewhere!), then you know I struggled with depression at one point because of CF. I was letting Satan have a foothold in that area of my life, and because CF has such a big impact in my life, Satan was gaining an even greater foothold than I thought possible. But the Lord used some wonderful people to lead me back to Jesus. I realized the purpose for my life that God had had for me all along, and I began to live it out.

But that doesn’t mean that I don’t let my guard down sometimes.

Cystic fibrosis is a chronic, life-threatening illness. This means that CF does not go away, and it can kill me. That’s some scary stuff. It scares me just thinking about it. That’s why having a positive attitude is so important!

I have to remember that I can die from other things too- like a car crash (there are some crazy drivers in West Texas…myself included sometimes…). This allows me to put things into perspective.

Yes, I can die from cystic fibrosis. This is a reality. If that happens, it could be years from now. I may need a lung transplant or two to save my life. But eventually, there is only so much modern medicine can do, right? CF can kill. Like I said before, it’s really scary thinking that I live with something that can kill me. Then again, living with something EVERY DAY that can kill me, yet I’m still alive, makes me a survivor. Not only a survivor, but a warrior.

Dictionary.com defines a warrior as, “a person who shows or has shown great vigor, courage, or aggressiveness”.

If you live with anything that you have to fight against every day, I think that shows vigor, courage, and aggressiveness-don’t you?

So yes, I consider myself a warrior against cystic fibrosis. Just like Paul in the bible, I too, have a “thorn in my side (or lung…hahaha)”. But I choose the positive attitude because that’s also how Jesus ultimately chose to deal with His death on the cross for our sins. He willingly laid down His life so that we might live. He did it for our good and not His own.

I choose to glorify God while I live with CF, because that’s what I am called to do. So when Satan gets me thinking about death and leaving behind my soon-to-be husband, my family, and my friends, I force myself to relinquish those thoughts to God so I can focus on the truth-I’m alive and I’m living a wonderful life. Death doesn’t have to be scary for me, because when I die, I’m going home to see Jesus-and CF can go to hell.

Guest Post-Jason Robison

Well, this was my first trip to Fort Worth in a long time- and my first time  to see what Jordan’s appointments were like. The day started too early trying to get on the road to get there by lunch, since the appointment was at 1:30 and we were going to make a day trip out of it. The drive up was nice, and everything was going well until we got into Fort Worth and had to find parking so we could go to lunch. After going in circles and maybe accidentally going the wrong way down a one-way, we found a spot in a paid parking area and had some lunch. Next we went to the hospital, dropped the car off, and then went inside to check-in. The wait to get called back from the waiting room wasn’t very long, and then they got right to getting vitals and weight and such before we were taken to a room. I was extremely thankful that Jordan’s new tube feed hadn’t been leaking and had allowed her to gain a lot of weight. Then we went to do her PFTs. I knew it had to with lung capacity, but I had no idea what the test was like. You basically have to close your nose, take a deep breath, and then exhale for a very long time as hard and as fast as you can. It probably was only a few seconds but it seemed like an eternity before the nurse told her to stop exhaling. And then she did it two more times! I felt out of breath just watching haha. Next, we waited in a room as various nurses and others, like her dietitian, came in to ask various questions. It was really cool to see how much detail and time the everyone put into making sure records were up-to-date and how many questions Jordan was asked where there was some discussion on the topic. It was really interesting when Jordan was talking to her dietitian, between her knowledge and the dietitian’s knowledge, I was a little lost as they went through good meal ideas, tube feed rates and details, and all kinds of snack ideas that would maximize her weight gain. It also was amazing to hear how many things they encourage for Jordan’s health. Between the various breathing treatments, vitamins, and all the snacks, they really help her live every day better. It was great to finally meet the doctor Jordan sees and I was really thankful for the level of care she receives there. We also talked about Jordan’s favorite thing- having children in the future. We talked about birth control and risks and things to know about pregnancy and having CF. The doctor suggested that I think about getting tested to see if I carry the CF gene, which I wasn’t too excited about since I have yet to have blood drawn in my life (a fact that blew Jordan’s mind since she’s a pro at it). Thankfully, everything went very well and there was nothing but good news from this visit. Jordan said I was her “good-luck charm” since everything went so well, and I sure hope I can keep that up in all of our visits in the future! Between all the waiting to see everyone, we didn’t get out of the hospital until around 4:30- just in time to get dinner and get stuck in five o’clock traffic! We grabbed some in ‘n out burger (it was my first time there) and hit the road. Traffic wasn’t as awful as I had expected, but we did get stuck for a little while on the edge of Fort Worth barely crawling for a good stretch. Thankfully after that, the ride home was pretty nice and we made it back in good time since we both had work the next morning. Overall, the trip there and back in a day was really not that bad, and it was really nice to get to see how Jordan’s appointments went. I am very thankful for the care she receives at Cook’s and I look forward to correctly using one-ways and getting more in ‘n out burgers in future trips.