By Crystal Bettenhausen-Bubulka
Sitting in the quiet confines of a hotel bathroom, I whispered words of reassurance into the phone, trying to hold back a flood of emotions. “You are so brave, and I am so very proud of you,” I said softly.
Her response, “I am proud of you more,” sparked laughter. The tears burning behind my eyes were released, followed by a flood of emotions that had become all too familiar in recent weeks. I had lost count of the seizures, each one adding to the weight of uncertainty pressing down on my shoulders.
A familiar voice echoed as I struggled to compose myself: “Not now, not here.” But the truth was, the fear and anxiety were never far from the surface. What would her life look like if we couldn’t bring these seizures under control? Despite my attempts to reassure myself, doubt lingered in the shadows. Like any parents dealing with a childhood illness or condition, we worried. We didn’t talk aloud about these worries; we weren’t there yet and were still in a phase of denial.
In the whirlwind of doctor’s appointments, tests, and medication adjustments, I found myself at crossroads. Accept our new reality and build a life around epilepsy, or cling to the hope that this was just a temporary setback. Neither option felt ideal.
I longed for the days before epilepsy cast its shadow over our lives, when worry didn’t consume every moment and simple pleasures weren’t tainted with fear. I resented parents of healthy children and mourned the loss of our plans for the future. As our caregiver stress mounted, so did our exhaustion. Afterschool activities required us to sit in our cars in the event a seizure occurred during play practice or at gymnastics. To ensure her life be as normal as possible, we had flipped our own lives upside down.
Our journey with epilepsy began unexpectedly, with two unprovoked seizures and a diagnosis that shattered our sense of security. The challenges of epilepsy are as varied as the individuals it affects. No two cases are alike, and each comes with its own set of obstacles to overcome. Our daughter’s diagnosis threw us into a world of uncertainty, where every day brought new challenges to navigate.
The past eight weeks have been a blur of doctor’s appointments, medication schedules, and sleepless nights. With each seizure, our hope for a quick resolution faded, replaced by the grim reality of our new normal.
The military lifestyle added an extra layer of complexity to our situation. The diagnosis meant sacrificing our plans to live overseas and enrolling in a program that limited our options for future orders. Yes, our eight-year-old was exceptional, but we also knew that the needs of the Navy would always come first, no matter the program in which she was enrolled. We were uncertain about who to inform and how to plan for the next emergency. Our once independent eight-year-old daughter now required constant supervision, her every move shadowed by the fear of another seizure.
As caregivers, my husband and I struggled to balance our daughter’s needs with the demands of daily life. Work took a backseat to doctor’s appointments, and our other children bore the weight of our worries.
As a clinical social worker, I know the importance of self-care, but practicing what I preached proved difficult. Avoidance became my coping mechanism, a way to shield myself from the overwhelming emotions threatening me. I was reminded of my work facilitating caregiver courses for adult children who were caring for a parent with Alzheimer’s disease. I was reminded of the quote shared with each new class: “Don’t just do something; stand there.” My avoidance was something that I was doing, and that was not the correct solution; in fact, it only made things worse.
After standing momentarily, taking a moment to listen to myself, I found clarity from a simplistic practice: pausing. Taking a moment to breathe, to center myself in the storm of emotions, gave me a moment to compose myself. It wasn’t just an opportunity to carry on; it was a moment to remind myself that we can do hard things. This pause also reminded me of the reality: we cannot do the hard stuff if we are burdened with caregiver fatigue.
For me, the power of pause allowed me the clarity to prioritize my own self-care and put boundaries around all the things that I had found myself consumed with.
As caregivers, we must care for ourselves no matter where that role falls. Like the iPhone, we cannot work in the red; if we don’t have a full charge, we will spend the day looking for the outlet. Similar to having too many apps open, we can’t focus on the essential things when we are in all the things.
Caregiver self-care is an investment in one’s health. When making the kid’s dental appointments, make your own as well. When you pack a healthy lunch for school, do the same for yourself. You would never expect your kids to go all day without proper nutrition, so don’t expect it from yourself. Commissary delivery: I honestly wouldn’t survive without it. I pay a small delivery fee, but it saves me the time and energy of parking and lugging groceries and allows me to plan out a healthy cart of groceries. The power of the pause will enable us to see how solutions can make more time for pause. Pausing gives our brains a moment to catch up.
Pausing, like self-care, is not selfish but essential for our well-being.
As we continue on this journey with epilepsy, I am learning to embrace the pause button, to give myself permission to step back and recharge. It’s a lesson I hope to pass on to others navigating their own caregiving journey
In the whirlwind of epilepsy, we’ve learned the invaluable lesson of pausing. In our uncertainty, we’ve found that taking a moment to breathe allows us to be recharged. In these pauses, we find the strength to face the challenges ahead, gather our thoughts, and nurture our anti-fragility. As we navigate this journey, we embrace the power of these pauses, knowing that they are not moments of weakness but rather moments of necessary self-care. Together, we move forward, stronger, one pause at a time.