Sixty Five Roses: Living life with a Chronic Illness and a Faithful God

Photo by David Besh on Pexels.com

Hello friends! I have a different kind of post for you this month. And, if I’m perfectly honest, its taken a whole lot of nerve to publish. I want to tell you a little part of my story. As I write this blog post, I am pretty sure that I’m doing something most bloggers can’t claim to have done while blogging. I’m sitting on my bed, church history spread around me, a cat lazily blinking at me and a nebulizer in my mouth as I inhale sodium chloride. Just a normal day! Right? 

As some of you may or may not know, I was born with a chronic illness called Cystic Fibrosis. And I haven’t shared it before for several reasons. 1, this disease is a part of me, but it has never defined me. 2, I’ll admit it’s nerve wracking to put my story out there. But this post has been a long time in coming. And if I can encourage someone with my story, then it’s so worth it. But I’m not here to tell you about me. No, I am here to tell you about the faithfulness of my God. His faithfulness and love in a world that is sadly full of brokenness; but also dancing in the rain.

First off, what is a chronic illness? A sweet friend of mine wrote a super helpful Crash Course on Chronic Illness. You can read it here (also, the rest of her blog is amazing too, be sure to check it out!). A chronic illness is, in a nutshell, a disease\health problem that doesn’t go away. Typically there’s treatments but no cure, and it’s usually something you carry your whole life. Even if it doesn’t last your entire life, it always lasts a long time; longer than any sickness should. Now, there are so many different Chronic illnesses, all with their own set of struggles, and pain and problems. But I’m just going to tell you a bit about mine, the one people like to refer to as “Sixty Five Roses”.

It got its nickname when a young Cystic Fibrosis patient heard his mom talking on the phone with a health care worker. Upon hearing the name: Cystic Fibrosis, he heard “sixty five roses”. Since then sixty five roses has been the Cystic Fibrosis mascot. 😉  CF (another, shorter nickname) has a very wide variety of symptoms and is different for every single person.

Cystic Fibrosis causes a problem with our genes. It affects the ability of our organs to work properly.  If you want to learn more about the science part of it, go ahead and look it up on your own. This girl is a writer, not a scientist. 😉 For me, CF affects my stomach, my lungs, blood sugar and my overall energy. Wow, that sounds intimidating when I write it but I really truly do have it so much better than other people with CF. God has been really gracious, and I’ve never been hospitalized for this, which is kinda a miracle. It’s always been hard, more so at some times than others, but I’ve really had it a lot better than lots of people. There have been times when I’ve been able to do everything I want to do. Times when my CF doesn’t stop me from dancing and babysitting and doing all those things I want to. But there have been the other times too.

Times when it’s hard. Guys, it’s so hard sometimes. The times when I don’t understand why this girl who loves to dance just had to put her pointe shoes on her bookshelf because she just couldn’t make it through class. The times I leave the sermon and go sit in the pastor (my dad)’s office because my blood sugar is dropping. The nights spent coughing and the days on the couch. The times when there’s so much that I want to do that I can’t do. I want to help my family, I want to be there for my friends. I want to be an A+ student and write my novel and go on walks and plan for college and hang out with friends and stay up late and go on adventures. I want to be strong. And there are lots of times when I can’t do all that because of my CF. And then there’s the symptoms on top of all that. 

And yes, there have been times when I cry out, “Why, God?” Why couldn’t I just have been normal? Why was this your plan? Why does it have to be so hard? I get that trials produce faith and endurance, but did it have to be like this? 

Why am I telling you all this? Because maybe my story can encourage you. Maybe my weakness can give you hope that God can use your weakness. If you take nothing else away from this blog post, I pray that you take this:

God is so incredibly faithful. He is so incredibly good. He is so incredibly strong when we are weak. His hope is so incredibly real. And no amount of trials or tribulations will ever change that. 

That’s something I know. Something I know, even though I don’t always feel it. Guys, I still doubt, I still mess up big time. But that doesn’t change the truth. 

And one of the things God has used to show me that is my Cystic Fibrosis. Because God does not give us these trials and then leave us to deal with them alone. 

How do I say all this? How do I still sometimes just stare at the wall and smile, amazed at how very blessed I am? 

Let me just say it. It’s not me. It’s so definitely not me. And that my friends, is how I know that God is faithful. Even when doubt comes up and sadness seems overwhelming, never once has He forsaken me. Never once have I ever walked alone. And never once has His plan not been for my good. God has been with me every step of this journey. I believe that He is using it for good; whether that be in the chance to encourage others or to grow closer to Him. I believe that He has a plan for me. And if that plan involves Cystic Fibrosis then that means, that means that God is gonna do something good with it. 

So my beautiful friend, if you  wonder how you will go on, how God can really be good in a world this hard, if you wonder if there is ever going to be hope, if things will ever look up, take courage. I know what it’s like to feel that. That doubt that this brokenness will ever be mended. The doubt that the sun will shine again. And it’s not just chronic illnesses, it’s whatever thing is hurting right now, whatever is hard for you right now. This world is broken. There’s pain and most of the time it’s not physical pain that hurts the most. It doesn’t matter how small or insignificant seeming it is, it doesn’t matter how big it is; God sees you. He sees your pain. And He loves you. 

Look up, friend. “In the end the Shadow (is) only a small and passing thing: there is light and high beauty forever beyond its reach.” (J.R.R Tolkien The Return of the King). 

There is hope. There is hope and that hope is Jesus Christ. That hope is the Holy God who gave Himself for His rebellious children, who died a sinner’s death, paying the debt that we owed: the debt that we could never pay. The God who loves us with an unimaginable love. The God who died so that if we believe and follow Him, we will have eternal life. He is the reason that I wouldn’t change having Cystic Fibrosis, even if I could.

There’s this one song by Austin French. It’s called “Why, God?”. And this song. I’ve been listening to it a lot lately. It says something that I’ve tried to put into words. The song (I’ll include a link at the end of the post) begins with asking Why God? Why do people have to die? Why does this world have to have so much pain? And then here’s the chorus:

I don’t understand

but I understand

Why God I need You,

It’s why God, I run to your arms

over and over again

It’s why God, I cling to Your love,

and hold on for dear life

and I find, You are right by my side.

Even here in the why… God.

It’s okay to not understand. I sure don’t understand it all. But don’t hide in those questions. God is big enough for the questions. He’s big enough for the doubts. He wants us to come to Him and when we do, He holds us. He catches our tears and He gives us the faith and the strength to carry on. You do not ever have to walk alone. God is with us in the brokenness. And we have hope. Hope that this God who has never once failed us, will not fail us now. That the God who died for us has a plan in our pain that surpasses what we could imagine. We have a hope that this now, this pain and sickness and hardship, it is not forever. We have a hope that Jesus is coming back and our God will wipe away every tear from our eyes. 

And I heard a loud voice from the throne, saying, “Behold the tabernacle of God is among men, and He will dwell among them, and they shall be His people, and God Himself will be among them, and He will wipe away every tear from their eyes; and there will no longer be any mourning, or crying, or pain; the first things have passed away. ~ Revelation 21:3-4

Wow friends, that’s a pretty amazing hope.

So, don’t give up. I know it’s hard. But don’t give up. Don’t stop dancing in the rain. Don’t stop smiling. Cry. Because that’s okay too. Sometimes we have to mourn what we’ve lost, even if we still have so much. Sometimes you have to mourn the life that you don’t get to have. And that’s okay. But don’t let it stop you from living this life to the fullest.

I can confidently say, “The Lord is my helper, I will not be afraid. What can man (or CF or anything else) do to me?” {Hebrews 13:6}.

Don’t give up my friends. You who are so beloved by God. HE IS FAITHFUL. 

Here’s the song!

14 comments

  1. Oh girl, this post is so good. Your strength and friendship is such an encouragement to me in my won battle with chronic illness. Thank you for your bravery in sharing this post (because I know how scary it was when I posted about chronic illness for the first time!). Love you and praying for you! 💕

    Liked by 1 person

  2. Such a beautiful reminder of the importance of being honest with God, just as Habakkuk was, and to rest in God and know he really does have this all in control. Thank you for sharing. I’m praying that God blesses you beyond measure for opening yourself up like this in an effort to help others! Hugs!

    Liked by 1 person

  3. What a lovely post, Josie! As I was reading it, I honestly felt like crying. You were so brave to write about what you are dealing with and how, despite the struggle, you still run to God. You still trust Him even though you don’t understand why CF is a part of His plan for your life. His ways are always perfect and He knows what is best. That’s hard because we want to know, but we weren’t meant to know everything. This was an encouragement to keep God #1 and allow Him to stay be in control. I’m still struggling with my disappointment and am sometimes mad that I cannot seem to get over it, but this trial is within His plan for a purpose. Nonetheless, we don’t have to go through anything alone because He is always near. Keep pressing on, friend! ❤

    Liked by 2 people

  4. You are a beautiful blessing Josie! Thank you for sharing this with the world. I see God using you to much to enourage others in their struggles, to turn their heart upon Jesus! He has given you so much strength to tell His story! I am so proud of you, Josie!! You are in my prayers!! I miss you very much and love you so very much and I can’t wait for us all to someday be in heaven with our Savior!
    For the Lamb in the midst of the throne will be their shepherd,
    and he will guide them to springs of living water,
    and God will wipe away every tear from their eyes.”

    Like

  5. God’s powerful love and life-changing grace and seen through your amazing story ❤ Thank you for being willing to put yourself out there, I know it takes courage. ❤ "Sometimes you have to mourn the life that you don’t get to have. And that’s okay. But don’t let it stop you from living this life to the fullest." That really hit my heart ❤ May God bless you in all that you do, and give you the strength and freedom to experience His everlasting joy! ❤

    Like

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