I’m sitting here crying in my coffee. Actually it’s water, but “crying in my water” doesn’t have quite the same ring to it! And as you know, I’d rather be drinking (more) coffee anyway!

It’s been three years now since I swallowed my first dose of Trikafta. And three days after that, I awoke to a new life. As I was thinking about what to write this year, how to commemorate and celebrate this day, I started reading back through some of my previous posts (thus the tears).

From April 2015:

“I started IV antibiotics two weeks ago to address a plunge in my lung function which followed a difficult winter of weathering illness after illness. Being my first experience with IVs for cystic fibrosis, I wasn’t quite sure what to expect, but I surely didn’t expect what came.  Instead of feeling relief and healing, I experienced a steady worsening of symptoms.  Instead of renewed health and strength, I felt myself plunging deeper into what feels like an abyss–sleepless nights, a tight, raspy cough, unsightly congestion, exhaustion, and with it all, a profound feeling of defeat.

This is not the first time I’ve had a health crisis, and this current struggle does not come close to the magnitude of a few emergency situations I’ve lived through.  But to the best of my recollection, this is the first time I’ve struggled so intensely to pull myself out of such strong feelings of fear, worry, and disappointment.”

From September 2015

“After a brief silence, [Jaime] asked, “Do you think we will have 50 years together?” I felt my throat tighten. We don’t often have these types of conversations. They are frightening. And of course, we can only guess at the answer. But sometimes, those questions that weigh on our hearts but rarely make it to our lips, have to be voiced.”

From October of 2016

“Some specific struggles have endured for years with ups and downs, times of hope and times of despair, bends in the road, minor bumps and major setbacks. At times I feel tired and bruised. There is chronic hardship in my life that will never leave me. Barring a miracle, there is no end in sight on this side of eternity. It’s hard. It’s sad. And so I grieve.“

From August 2017

“I can’t find my footing and my lung function is stubbornly refusing to climb back up, even while on the medications. It’s been incredibly disheartening.

My emotions have taken a pretty hard hit, and that has perhaps been the hardest part of this summer. Just three short months ago I was flying high. I was so relieved and excited to have gotten through the winter relatively unscathed for the first time in several years. My heart was brimming with hope and thankfulness. I thought I had finally regained the strength and stability I’d been laboring towards for the past two years and I fully expected to continue to gain health and strength through the summer months. Suddenly I could imagine things for myself that I barely dared to hope for during some of the hardest moments of the past two years. I thought that after jumping hurdle after hurdle I’d finally reached my goal. Yet here I am, no better off than I was two years ago. Back to the beginning again. I imagined blue skies and puffy white clouds, and instead the skies have been dark and the storm clouds menacing.

And it hurts. Dreams are threatening to slip away forever. The hope, the joy, the anticipation I felt last spring seems like some sort of cruel joke now. I feel betrayed. Was I a fool for expecting those clear skies?“

When I started Trikafta I wondered if over time I would begin to forget what my old life was like. I wondered if the intensity and struggles would soften around the edges. But they haven’t. When I read those words, I am brought right back. I can feel the tightness in my chest. I can feel a hand on my throat, the air straining through my lungs. I feel the frustration, the grief, the pain, the fear. I remember.

Alena loves to help me take my medicine. Every day when she hands me those Trikafta pills, I am thankful. So. Very. Thankful. She was too little to remember those hardest days, and is too young now to understand the significance of what she is holding. Yet she hands them to me, the gift that allows me to live free and to be a healthy mother. To be on such a scary, slippery slope, to feel the hand of death reaching for me, to see my disease creep into every aspect of my life, and then to have life and health breathed back into my body is truly a most unexpected and remarkable gift.

Those years included many hard times. There was so much worry, so much loss, so much hurt, so much struggle. Even so, even then, that wasn’t the whole story.

From June 2015

“Then my phone started blowing up.  At first I wasn’t sure what was happening.  I got one text with a photo, than another, than another.  You see, unbeknownst to me, Jaime had purchased some “breathe” bracelets from the Cystic Fibrosis Foundation and offered them to family and friends to wear as a show of support and solidarity. People started sending me pictures of themselves wearing the bands, saying they were thinking of me and praying for me this morning since it was my appointment day. I didn’t have any time to worry because I spent all morning overwhelmed and moved by the amazing show of love and support.”

From July 2017

“And my desire for a full and meaningful life? That can happen at 100% lung function, it can happen at 50%, and it can happen at 30%. It may look different at each step of the way and it may involve adjustments and disappointments. I may need to find fresh reasons for hope on a regular basis. But until the day that God calls me home to heaven, I know He will help me to truly live.”

From November 2018

“Yet this summer, after experiencing a stretch of improved stability, God gave us this gift of a new baby! His timing and plans don’t always match ours, and sometimes they don’t make a lot of sense to us. There’s a sort of a glorious absurdity to the fact that I’m pregnant now…at 40 years old with my lung function in the 30s, seven years after my first pregnancy. It’s not exactly what I would have imagined or planned. Yet it’s beautiful, perfect timing.“

There is an ease to my life now that I could not have imagined possible on that morning three years ago. But even before this miracle, even when my struggles were great, still I was living a full and joyful life. Hard, yes. But full of goodness and love and joy. Joy need not be dependent on the particulars of our lives. God is enough in every situation. He provides in every struggle. My heart overflows with thanks.

Thank you God for this medical breakthrough and the miracle of renewed health. Thank you for relief from the oppressive symptoms of my disease, for deep, clear breaths, and a bright and hopeful future. Thank you that I am here to raise my children, that I can work, clean my house, run errands, and have “just a cold.” Thank you that I have enough breath to read aloud, to play tag, to lift and carry my little one, to run up and down the stairs when I’m in a rush. Thank you that I have energy at the end of a long day to cook dinner, to fold that last load of laundry, to tuck my kids into bed, to play with the cat. Thank you for the lines on my forehead and the wrinkles around my eyes–for the accumulation of years that have caused them and the smiles and laughter etched there.

Thank you God for the struggles, for all I learned through them, for the ways they stretched me and helped me to grow. Thank you for the eyes they gave me to see and understand suffering, for the countless times they pushed me into the arms of Jesus where I found hope and meaning and purpose. Thank you for helping me to be resilient and for giving me the strength to keep fighting. Because of you, I was never alone. Thank you for blessing me through my pain and because of it. Help me never to forget your faithfulness. Remind me of all we’ve been through together when pain and struggle find me again.

And to you dear friends and family, thank you. You have enriched my life with your love and care, your encouragement and prayers, and your constant support. Your love made the hard times bearable and it fills the good times with even more joy. You have allowed my pain to become your pain and my joy to become your joy. I needed you then and I need you now. You have been faithful.

I read the perfect devotion this morning from Kate Bowler’s book entitled Good Enough. At the end of the devotion was written a “Blessing for Caregivers.” It is a fitting way to end this post.

“Close your eyes and see them all, the army of those who have cared for you in the past, who have fought for you, who have loved you well. And drink it in, creating a pool of gratitude that swells inside. For blessed are you, having received, and having loved, who can walk around with a thankful heart. Amen.”