Finding Renewal in the Midst of this Rare Disease Life
August has always been a time of renewal for me. Maybe it’s a carryover from my school days when the end of summer marked the beginning of a new school year with fresh starts, sharpened pencils, and endless possibilities.
Over the years, I’ve carried that sense of new beginnings into my adult life. Each August, I choose a word of intention; a single word to help anchor me for the next 364 days. In the past, that word was grace. Another year, patience. And this past year, balance.
This year, my word is restoration.
Webster defines restoration as “the action of returning something to a former owner, place, or condition.”
I’m writing these words from somewhere in the middle of the Atlantic Ocean, on our family’s yearly August getaway. By the time you’re reading this, I’ll likely be back home smack in the thick of work, medical appointments, and the never-ending busyness of life. But this week away is more than a vacation. It’s a time to rest, reconnect, and renew. A time to restore.
I’ve been asking myself: What does restoration look like when you’re a caregiver, especially when you’re parenting a child with a rare disease?
If I’m honest, some days it feels impossible. This rare disease life can drain every ounce of energy, joy, and peace I have. It can feel like it’s doing exactly what Scripture warns about in reference to the enemy: it seeks to “steal, kill, and destroy” any hope of calm.
A Lesson From Elijah
Recently, I finished reading Powerful Promises for Every Woman by Elizabeth George. It was a gift from a dear friend who could see I was worn thin.
(Side note: make sure you have people in your life who notice what you need before you even realize it yourself.)
In one chapter, George reflects on the story of Elijah—a prophet who had given everything in service, only to find himself worn out, discouraged, and ready to give up.
What strikes me is how God met Elijah in that moment: not with condemnation, but with restoration. The way Elijah was cared for offers a model that we can adapt to our own lives when we’re running on empty.
Four Steps to Restoration
1. Physical Care
When Elijah was at his lowest, the first thing he received was rest, food, and water. His body needed replenishing before his spirit could recover.
The same is true for us. When caregiving leaves us depleted, the basics often suffer. We skip meals, get too little sleep, and, if you’re like me, consume too much caffeine—and none of that sustains us. Taking care of our bodies is the foundation of restoration.
2. Someone to Listen
Elijah had space to pour out his heart honestly, without judgment. He wasn’t told to “be stronger” or to “get over it.” He was heard.
In our lives, restoration often begins with someone willing to simply listen—a friend, a confidant, a therapist. And when no one is available, even a journal can serve as that safe space.
3. Something to Do
Elijah was given direction; a simple next step that grounded him. Structure and purpose helped lift him out of despair.
For us, routine can bring stability in chaos. Even small, steady actions—like keeping a morning ritual or setting aside time for a daily walk—can help anchor us when everything else feels unpredictable.
4. A Plan and the Right Information
Finally, Elijah was given a plan for the future. He wasn’t left wandering; he had clarity about what came next.
As caregivers, having a plan—whether it’s a medical schedule, a financial roadmap, or even a family calendar—can free us from the weight of constant uncertainty. Facts and preparation don’t remove all of the stress, but they make it easier to keep moving forward.
Why Restoration Matters
Restoration isn’t about recreating the past or getting “back to normal.” For caregivers, that’s rarely possible. Instead, it’s about creating moments of renewal that allow us to keep going.
Elijah’s story reminds me that restoration is possible even in the midst of the most challenging of circumstances. And it doesn’t have to be through grand, sweeping gestures, but instead, through simple, intentional steps.
As I step off this ship and back into the demands of daily life, I’m reminded of an important truth:
Restoration is not a luxury. It’s a necessity. One that we are all deserving of and that is worth protecting.