Because I like to maintain an account of our family’s daily life, I keep a One Line a Day journal. With five years to a page, there’s just enough room to record the happenings and highlights or, if more appropriate, the lack of happenings and lowlights—if a lowlight is even a thing.
One day in April, in the midst of the COVID-19 quarantine of 2020, before I wrote whatever it was I planned to write, I noticed the entry from that day the year before: Elyse’s MRI was normal. This would be good news—if she could walk and was getting better. She’s being referred . . .
I looked at the next day’s entry: Today felt very heavy. I made 6 appointments with 4 practitioners for 3 ailments for 2 girls.
The Mysterious Landscape of Chronic Illness
A year ago, our family was walking into dark, unfamiliar, difficult, and unwelcome terrain. Our trail had taken a sharp, steep turn into the mysterious landscape of chronic illness. Our older daughter developed Chronic Regional Pain Syndrome after slipping on the ice. That same month, our younger daughter was diagnosed with hidradenitis suppurativa, followed by the sudden onset of irritable bowel syndrome and an immune system that seemed unable to stand up even to the common cold.
Our days felt heavy because they were heavy.
Every single evening when our family sat down and joined hands to pray for dinner, I dropped my arm onto the table and my head heavily onto my arm, exhausted by the rigors of the day—learning to live a new life and speak a new vocabulary, keeping the appointments and making the decisions, experiencing (vicariously) unrelenting loss and pain, managing my own grief. When I realized that the dinner-prayer-head-resting-ritual was a nightly occurrence, I added worry to my weariness. I wasn’t just worried about my girls. I was worried that I was doing this whole thing wrong. As in, maybe I wasn’t navigating it by faith, maybe I was carrying it all in my own strength rather than relying on God’s.
Weariness, Fatigue, and Too Much Information for All The Decisions
Following pertinent phrases of Scripture in search of the answer to whether my weariness was a result of trying to walk this road on my own, I came to understand that the presence of fatigue didn’t mean I was doing it wrong. It meant that the terrain was tough and the daily dousing from the metaphoric fire hose of Too Much Information for All The Decisions had taken a toll on my mind, heart, soul, and strength. The days were long and by night I was spent. But, every morning, I started fresh with new mercies—enough to last until evening. I was given enough strength for each one of my days. (See Lamentations 3:22- 23 and Deuteronomy 33:25) Eventually, the exhaustion abated, even as the intensity of our circumstances—and the number of appointments and adaptations—increased.
A year ago, each day was a step into the unknown. Life, like our girls’ pain, felt out of control. Our perspective about the future was bleak.
Maybe that sounds familiar.
A Lot Can Change in a Year
A year ago, I couldn’t imagine that life would ever be any different, that simple things like the touch of clothing or a gentle breeze would no longer bring my girls pain, that their symptoms could be brought under control, that diagnosis, more good days than bad, or even remission might ever be possible.
Today I can picture a different future.
When I saw those lines in my journal, I read them to my daughters and we laughed. We laughed because so much has changed, changed in ways we could not have envisioned a year—or even a few months—ago. We laughed because we were sequestered together in our home, in the midst of another heretofore unimagined situation, walking dark, unfamiliar, difficult, unwanted terrain—together. We laughed because, regardless of the current situation or our perspective on it—navigating tough terrain in 2019 had shown us pretty clearly: a lot can change in a year.
And that gives us hope.
A Voice of Chronic Joy® & Writer
Natalie is a wife, a mom, and a reluctant hiker who has learned that finding her way in the woods helps her walk by faith in everyday life. She writes and speaks to encourage others to navigate the landscape of life by faith rather than autopilot.
Joni Eareckson Tada
There is hardly a person who doesn’t know someone dealing with a disability, disease, chronic illness, or other form of personal suffering. This is the first study Bible to directly address those who suffer and the people who love and care for them. Readers will find valuable information, meaningful encouragement, and challenging applications as they encounter God’s Word.
Is it possible to embrace suffering as a privilege, rather than a punishment? Readers will find the bold invitation to trust a known God with an unknown future, as well as practical insights into surviving anything by redefining how we think about everything.
What if God wants you to wait?Most of us know what it’s like to wait for God to change our circumstances. But, whether we’re waiting for physical healing, emotional breakthrough, or better relationships, waiting is something we usually try to avoid. Why? Because waiting is painful and hard.
Gift of Hope
Sometimes we just need to know that someone cares, that our stories matter, that hope is possible – even in a life with chronic illness, even in the wake of sustained loss, even through debilitating pain. The Gift of Hope grew from our prayer that, together with God, we could write a book offering the first vital steps toward hope.