The little one struggled to form the name of his diagnosis. He watched his mama say them one more time, those two immensely difficult words for a four-year-old mouth to wrap itself around: cystic fibrosis. Suddenly, his eyes lit up with dawning recognition. “Oh! Sixty-five roses!” As pride swelled in his tiny chest for conquering yet another obstacle in his daily adventure, he couldn’t have known he’d just coined a phrase.
Half a century later, you can still find #65roses accompanying posts about this life-altering disease.
The basic mechanics are a bit fuzzy to me (since it’s a rarity in the medical world), but I’m learning. Our baby girl—due in ten weeks—will also eventually have to wrap her tongue around those two immensely difficult words. If she’s a typical CF patient, she’ll have good days and bad days and breathing treatments and hospital stays and more pills in a month than you’d want to see in a lifetime. (And a shorter lifetime than you’d ever want to see.) She’ll have a six-foot barrier between herself and other kids like her. She’ll have sleepless nights, coughing-filled days, and a body waging war on itself.
You know what else she’ll have? She’ll have a mama pouring every ounce of her creative energy into raising a warrior whose light pushes back darkness. A daddy who infuses daily moments with joy as bright as the sun. An extended family bent on loving her well. A church that surrounds her with support. A care team dedicated to ensuring the maximum quantity and quality of life possible.
And even if every. single. one. of these resources fails, she’ll have a God who treasures her more than anyone else ever could. Who knows her inside and out. Who calls her by name. Who designed a big, beautiful plan for her days here on earth. Who threw Himself into harm’s way to rescue her soul. Who has unending faithfulness and fresh mercies each morning. Who pours out promises that point to forever. Who will hold her ultimate healing in His hands the moment she steps into glory.
Cystic fibrosis has no cure. It’s lifelong and life-shortening. It can drain the hope right out of me if I forget it’s not the biggest contender in this situation. The Jesus who took God’s full wrath in my place, in my daughter’s place, in your place—He’s already been named champion. The battle is over; all that’s left is the mopping up. (And goodness, there’s a lot of mopping up to do.) But nothing that truly matters is hanging in the balance anymore. Identity is safe. Salvation is safe. Eternity is safe. We can start here and work not for life but from it.
God has systematically been revealing hope in the midst of pain this last week. He’s done it by providing physically through a nursery filling up with pink. He’s provided spiritually through flooding my heart with gospel lyrics. He’s provided emotionally through a bouquet of 65 roses with a simple note attached: “Your leaders at church stand with you.”
This now-and-not-yet world of redemption we inhabit? It’s hard. Sometimes it stinks. But it’s not forever, and we don’t navigate it alone. Take heart, dear one: we know how the story ends.
Curious about cystic fibrosis? Stay away from Google; it’s an outdated black hole of confusion when it comes to this topic. Experts rely on the official Cystic Fibrosis Foundation’s website.
Beautiful, faithfilled, realistic post, Cassie. I continue to pray for all three of you as you get ready for this challenging journey. God couldn’t give this child to just anyone, you know. He chose to give this precious baby girl to you and Riley because He knew you two would be a willing conduit of His love to Pippa, and because He knew you would bear up in faith under the long days and nights that are before you and allow this journey to draw you closer to Him.
Thank you for those encouraging words!
Beautifully written! Thank you for sharing your heart so openly.
Oh Kassie girl, what a beautiful heart you have. Thank you for bringing us along with you and Riley on this journey. You are surrounded by those who love and support you, covered in God’s care and filled with His spirit. 65 roses…I will never forget.
I’m still crying…not for Pippa Breigh, but for what a special mommy you are going to be. I am so very proud of you, Kassie Leigh.