It is Well

Last night, I was standing in line at a concession stand to buy two waters-one for me and one for my mom. We were at a Mercy Me concert for a mommy/daughter date. As I stood in line, I scrolled through my Facebook feed like every other person, trying to look like I wasn’t bored (the line was extremely long). It wasn’t long before I saw a post about a fellow Cyster (other women with CF are “cysters” and men with CF are our “fibros”) in Lubbock who passed away early yesterday morning from CF complications. I was in shock.

This sweet friend was just a few years older than me. We had never met in person, due to the infectious risk of both of us having cystic fibrosis, but we had talked several times over social media and were able to connect that way (as most of us with CF are forced to).

It never gets easy. It’s never easy losing anyone, whether it’s a family member or a friend. But sometimes it seems it’s even harder losing someone that has the same chronic illness as you. It’s easy to see yourself in that loss. It’s easy to think, “That could be me” and wonder when it will be your turn.

It’s a hard road that no one wants to walk down, and one that no one should.

I’ve had a few people tell me they’re not sure how I do it. How do I still put my faith in a God that allows me to have this illness and suffer from it? That allows friends with the same disease to pass so young, with such full lives ahead of them? It’s a hard thing to swallow sometimes.

That’s why it was so easy for me to fall into depression just a few years ago, because I was tired of dealing with CF.

So how do I put my faith in a God like this? Why did I eventually choose a more optimistic perspective on living with a disease that will most likely take my life one day?

Because I know God created me for a higher purpose. I’m here for a bigger reason than myself-we all are.

John 11:4 says, “When He heard this, Jesus said, ‘This sickness will not end in death. No, it is for God’s glory so that God’s son may be glorified through it.'”

I believe fully that with or without CF, I am here to glorify God. I am here to further His kingdom, in whatever way God has planned for me. My desire is to be His faithful servant.

Does it get hard sometimes? Duh. God never said living a Christian’s life would be easy. We know that many Christians have been persecuted, simply for doing God’s work. In fact, I consider cystic fibrosis to be my thorn. In 2 Corinthians, Paul talks about his thorn. 2 Corinthians 12:9-10 says, “But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore, I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”

Wow. Such a powerful couple of verses. Paul also tells us that he begged God three times to take away his thorn. But God didn’t. Could He have?

Our God created us. He breathed life into us. If you’ve read the bible, you know God can and will do anything He wants to. He is almighty, powerful, and sovereign. Can He take away our thorns? You bet He can. Does He choose to take away our thorns? Sometimes. But sometimes He doesn’t.

There are many thorns the Lord has graciously removed from my life. Cystic Fibrosis is not one of them. It definitely sucks.

At the Mercy Me concert, the performed a song I had not heard before called, “Even If”.

“It’s easy to sing, when there’s nothing to bring me down. But what will I say, when I’m held to the flame, like I am right now?”

But the most powerful words are in the rest of the song:

“I know You’re able, and I know you can, save through the fire with Your mighty hand. But even if You don’t, my hope is You alone. But God when You choose to leave the mountain unmovable, give me the strength to be able to sing, it is well with my soul. I know the sorrow, I know the hurt, would all go away if You’d just say the word. But even if You don’t, my hope is You alone. You’ve been faithful, You’ve been good all of my days. Jesus, I will cling to You. Come what may, ’cause I know You’re able. I know You can. It is well with my soul.”

Even though I know He can, if God never chooses to take away the burden of cystic fibrosis, I will always choose to serve Him. Sometimes it is scary. It’s hard living a life, knowing that your death could be sooner than you wanted. No one wants a life expectancy of 38. But that’s mine.

The Lord has been gracious and so good to me. I am confident I will live longer than I am expected to, because I’ve already done it once! When I was diagnosed 23 years ago, I was only given 18 years to live. The Lord is so good.

It is well with my soul, because I know who my God is.

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Pressing On

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Well friends, it’s that time again! Time for an update. My last update was a few months ago as my last appointment was disappointing, to say the least. I was having a difficult time with my tube feeds and was therefore, not gaining weight. I was having so much reflux and was forced to decrease the volume of my feeds at night. Fortunately, I figured out a way to increase my calories without forcing myself to eat so much food.

It’s so much easier to drink calories than it is to eat them, so I started making smoothies! Jason helped me a lot by making them the night before using my recipe. We used fruit, ice cream, whipping cream and whole milk. Each smoothie was 850 calories and about 24 ounces. I drank one a day for several weeks until I honestly just got tired of them. I stopped drinking smoothies for a couple of weeks and started to see the weight drop little by little.

I don’t think anyone understands how frustrating it is to consistently lose weight when you already try to gain it. Then to be even more frustrated when you have to be consistent with high calorie meals and snacks. Sometimes, I just want to eat an apple without peanut butter, or eat my cucumbers without cottage cheese or ranch. I crave fruits and vegetables, and I hate that I do. Thankfully, I have enough information that I can still have my fruits and vegetables when I want them. It’s just hard sometimes 🙂

In December, you may recall that I announced my desire to write a cookbook for the CF community. I was so excited about it! I did a lot of research on it after I passed my RD exam right before the new year. I talked to a contact at TIME Magazine who gave some really great pointers. But I soon realized that I wasn’t motivated in the least to write this cookbook. Plus, I’m not one to really create my own recipes-I enjoy taking others’ recipes and modifying them to make them higher in calories. I began thinking about and researching all of the recipes that I thought I would want to include in my cookbook. I immediately became overwhelmed and my motivation vanished. But, the desire remained.

A couple of weeks ago, I met with a Registered Dietitian at the Health Sciences Center about a possible job opportunity. Although the potential job wasn’t for me, she lent me a book titled, “A Dietitian’s Cancer Story”. I had told her about my cookbook idea and how unmotivated I was. In this book, the dietitian who wrote it talks about her story living with her cancer diagnoses. But, she also includes nutrition information, shopping lists and much more. I am so thankful for this RD that gave me a new perspective! Now, I am not writing a cookbook, but a book, for the CF community. It will be my story of living with CF, but will include nutrition information, tips and tricks and so much more for those living with CF. I’m not sure if there is anyone more qualified to write this book than me, a Registered Dietitian living with CF.

Now, about my latest appointment at Cook’s.

Jason and I drove in about 11:30 am Wednesday morning and ate lunch with a friend in the hospital cafeteria. When I was staying at Cook’s for my first hospitalization (that I can remember), I was in high school. Every day for at least one meal I had a Starbuck’s frappuccino from a Starbucks in the hospital and a pasta dish from the cafeteria made with penne pasta, chicken, garlic, spinach and alfredo sauce. Fortunately for me, they still have this delicious dish! I get it every time I come to the hospital now.

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I was feeling really confident about this appointment. I was right to feel that way, because I got a great checkup! My weight was up to almost 112 pounds and my PFT was up to 92% from the previous 85%. My doctor was extremely happy. I met with my RD as well, who I consider a good friend. She was happy with my weight gain and was excited to hear about my book idea. She agreed to be a sounding board for me for things I don’t feel I know much about, such as CF infant nutrition and CF-Related-Diabetes (CFRD). My RD is also expecting her first child, so that was extremely exciting to hear about!

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I told my doctor that I had just accepted a position as a full-time RD at UMC, and he was very happy for me! I was worried that he might have concerns about me working in the hospital due to the possible high risk of infection. I think, because I am doing so well and will spend most of my time in an office charting, he trusts that I will be okay.

One thing though. A few weeks ago, Jason and I completed a health screening at his work place for our insurance. We got the results of our blood work a week before I went to Cook’s and it showed my TSH (thyroid-stimulating hormone) to be high, which could indicate hypothyroidism. This makes a lot of sense to me because I have been extremely fatigued lately and my body temp is really “off”. I showed the results to Dr. Burk and explained my symptoms, and he wants my TSH re-checked, along with my T3 and T4 levels. He wants these checked a couple of weeks before I go back to Cook’s in May. I will then meet with an endocrinologist that works specifically with CF patients at Cook’s to see if next steps need to be taken. Of course, we are hoping they don’t need to be! Honestly, I would love an answer for my fatigue that seemed to have come out of nowhere, but this could just be from CF. Having a disease that causes your lungs to work extra hard can be tiring I guess!

So overall, it was a great appointment! I have stopped with the fruit smoothies, just because I got tired of them, and am instead drinking a milkshake made with Carnation Instant Breakfast (chocolate), whole milk, whipping cream and ice  cream. It’s so good that I actually crave them and sometimes drink more than one a day! These have 740 calories so I am getting a lot in, especially with the extra 1,000 calories I am getting from my new Kate Farms tube feeding formula.

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It’s a lot of work, gaining weight and keeping it on, but I desire to breathe well, live a long life and grow old with my husband. I must press on with the strength the Lord has given me! I am excited to enter my new journey as a registered dietitian nutritionist at a Level One trauma center, and to start on my book!

 

Progressively Choosing Joy

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Well friends, I’ve got quite the update for you. I’m a week and a half away from finishing my dietetic internship and am in the process of studying for the RD exam and finishing my last class for my Master’s degree. Last Friday, I successfully passed my exit exams, which means I get to graduate in a month! It’s all very exciting. Health-wise though, it’s been a rocky road lately.

About a month and a half ago, I started to experience reflux with my tube feeds, which is pretty abnormal for me. So I started taking Ranitidine (Zantac) 75 mg before and after my feeds. It helped for about two weeks. At the same time that I was experiencing the reflux, I got sick and had a runny nose, sore throat, congestion and increased cough for about 3 weeks. I started on Flonase, which helped a lot with the cough. Then, the reflux started to get worse. It woke me up in the middle of the night. It got so bad, I started to throw up my tube feeds in the morning, and it didn’t help that I was coughing so much. So I stopped tube feeding for a couple of weeks because it was so uncomfortable. But soon, I started to lose weight, and FAST. I was back down to 104 pounds in no time from my usual 115 pounds. I knew I needed to start tube feeding again, so I did, but was having the same issues.

So I called my gastroenterologist. They set me up to come see them on November 8th and told me to do the Ranitidine in the morning after my feeds and to do Omeprazole (Prilosec OTC) before my feeds at night. I called and spoke with a dietitian at Cook Children’s who told me to decrease my rate and work back up to my regular rate. This was about a week and a half ago, so we decided to check in with the dietitian when I went to my appointment in Fort Worth with my specialist.

So for the past week and a half, I have done 2 cans of Nutren 2.0 at night with the medications. I have tried to do my normal 3 cans, but I experience reflux. It has been very frustrating.

Yesterday was the 8th, so I talked with my gastroenterologist who thinks I have gastroparesis-which basically means my stomach isn’t emptying food correctly and then it gets upset. The treatment for this is to avoid fatty foods and eat 6 small meals a day. Well, if you know anything about CF, you know that we NEED fatty foods and big meals in order to gain weight! He said he could start me on Reglan, which helps with gut motility, but because I am so sensitive to medications, he didn’t want to do that. So none of this worked for me.

Today, thankfully, I had my appointment with Dr. Burk at Cook Children’s. My weight was 108 pounds-so up since I had started back with my tube feeds, but down 7 pounds from last visit, which is not good at all. My PFT was 84% at my highest. At my last visit, it was 85%. But if you looked at my trend, my PFT’s have been trending down for the past year. For CF patients, when your weight and lung function are both down, it’s never a good sign.

So we had Rachel, my dietitian, Cyndy, Dr. Burk’s nurse practitioner, and Dr. Burk all in the room with Jason and I. Together, we talked over my options.

Option 1: Increase my dosage of Omeprazole and Ranitidine and get back to 3 cans of Nutren/night. Get on a new inhaled medication called Tobi (that I have been on before) that I will need to do daily. Start Azithromycin to help with the inflammation in my lungs 3 times weekly.

Option 2: Because I don’t like to add medications if I can help it (and Proton Pump Inhibiters like Ranitidine and Omeprazole can cause other issues if you’re on them for an extended period), I can decrease my rate and still do 3 cans of Nutren/day by doing continuous feeds. This means, I do my feeds for 24 hrs/day. Dr. Burk said I could do 18 if I wanted, or 16 hours, or whatever is best for me. But this ensures that I don’t have to take the extra meds and I don’t get the reflux since my rate will be lower. If I do this, I have to keep a log and bring it to my next appointment so they know what I have been doing. The other issue with this, is that I am still doing my internship, and feeding all day could cause a decrease in appetite for actual food.

But y’all. I am seriously sensitive to medications and I don’t want to be on these long-term. So, I’m going with Option 2 for now. I will be wearing a backpack during the day with my pump and feeding bag inside. It’s a big change, but one that I think is best for me right now. I can unhook when I want to, as long as I still get a good amount of feeds in. If I end up not liking this option, I can always go back to Option 1 of increasing the meds. Someday, maybe I won’t need my button anymore, and then I won’t have to worry about these issues.

Rachel, my dietitian reminded me too, that most CF patients have been on PPI’s since they were babies. It’s like a natural thing for CF patients. I told her that I remember being on them when I was little. But you know, it’s so frustrating to be going through this. I am very blessed, because I have relatively little health problems, especially when you compare me to other CF patients. It is so easy to see myself as invincible. It’s easy to say that CF won’t catch up to me. But CF is a progressive disease. You can do everything right, and still, CF can rear its head out of nowhere. It’s unfair.

Truly, I hate this disease. But I know the Lord has a greater plan for me. One that sometimes, I don’t understand. He is greater and bigger than this disease. I am thankful that I didn’t need antibiotics and that my lung function wasn’t worse than it was. My weight is still going up. And best of all, I’m almost DONE with dietetic internship and school! There are so many good things to look forward to that I can’t let CF stand in the way. I can’t let the thoughts of what could be get me down. I choose to take each obstacle as they come and to let the Lord take away my anxieties and fears. I desire to progressively choose joy.

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!