When I sat down to write about what the words “keep dancing” mean to me, I was soon brought to tears at the memories of what it took to get us here. This journey was anything but easy and I can’t help but look back with immense gratitude for how much we have overcome as a family. To anyone looking in from the outside, it might seem like an unusual mantra to relate to in the midst of such a serious diagnosis. But for me, "keep dancing" embodies something deeply personal, something from within my soul: the refusal to stop moving forward, no matter how tough things get.
The First Steps
When our son’s seizures began, it felt like we were constantly stumbling. The medical tests, the endless appointments, the trial and error of medications—each new hurdle made it feel like we were losing our footing. There were moments of despair when it seemed like nothing was working, like every step forward led to two steps back.
I remember feeling powerless in the face of the unknown. Seizures are unpredictable, terrifying, and at times took a heavy toll on our son’s development. But in the midst of this storm, I realized something vital: We couldn't afford to stop, our son needed us. We had to keep pushing forward, even if we didn’t always know where we were headed. It's about persevering in the face of uncertainty. It's about staying in motion, even when the song changes unexpectedly, and it certainly did.
Finding Our Rhythm
Epilepsy isn't just a diagnosis—it’s an entire way of life. For us, that meant embracing the medical ketogenic diet, which has been a game changer in our son’s seizure control. We had to learn to dance around a whole new world of strict dietary restrictions and huge lifestyle changes. The transition wasn’t easy. It took planning, precision, and most of all, patience. But this was our new normal, and we had to learn how to keep pace with it.
There were many times I wanted to stop. To be honest, there were many times when it felt like we were standing in the middle of a storm, unable to catch our breath. Many nights I sat at our kitchen table and cried, paralyzed by the thought of doing one more late night food prep. But even in the hardest moments, I reminded myself that I could either control the diet or let it control me. We could still find ways to live and thrive despite the challenges. We could still find beauty in the everyday moments, even when things felt impossibly hard.
Dancing Through Setbacks
If epilepsy teaches you anything, it’s that setbacks are inevitable. Seizures can come out of nowhere, even when you think you’ve found a groove that works. Watching our son go through that has been one of the hardest things we've ever experienced. As parents, it is heartbreaking to watch your child’s development come to a complete halt — to watch them struggle to speak, process emotions, climb the playground or ride a tricycle, make connections with other children, or even watch them struggle with their own self-imposed ritualistic behaviors as their way of coping with the frustrating world around them. Every time a seizure would break through, it felt like the music stopped for a moment. The fear, the helplessness would try again and again to take over.
But we must remind ourselves that these setbacks don’t define us. We learn to pick up the pieces, adjust, and find a new path. We push through the tough moments, because giving up on our children is simply not an option. My son is incredibly strong, and his resilience reminds me everyday that we can handle whatever comes our way. His spirit, his smile, his energy is what keeps us dancing, even when we feel like we can’t go on.
Celebrating the Small Wins
Amidst the challenges, there are victories, big and small, that remind us why we keep fighting. For us, every seizure-free day is a reason to celebrate. Every smile, every laugh, every moment of normalcy—they are all part of healing. When it comes to our son’s diagnosis and treatment, we have decided to no longer look towards the future in fear and uncertainty. We can, and will, take on what life may hand us—I know that because we have done it time and time again. So instead we choose to celebrate the days when his diet works, when he is excited about a meal, when he feels proud of himself for hitting a new milestone, and when the world seems just a little brighter. These moments remind me that even in the toughest circumstances, joy can still exist.
Moving Forward, Together
When we first stepped into the ketogenic chapter of our journey, I never imagined I would one day learn to embrace our son’s diet. In the early years, even after seeing the proven benefits to our son’s seizure control and development, the diet caused me nothing short of daily anxiety, frustration and sadness. I felt deprived of simple freedoms—to leave the house without a cooler and backpack of supplies in hand, to navigate our busy lives without following a strict meal schedule, to spend countless hours every week cooking instead of playing with my children or of the simple pleasures of parenthood like taking our kids out for ice cream on a hot summer day.
The words “keep dancing” are about more than just survival. It’s about thriving in a world that doesn’t always make sense. It’s about resilience, determination, and mostly hope. Epilepsy has taught me that life’s music may not always be the melody we expect, but we can still find a way to move through it with grace and strength. It is with profound pride that my husband and I can now turn back to our community to help others navigate this journey. I could never have imagined that we would reach a point where our story might inspire other families facing similar challenges. Since our son’s diagnosis four years ago, we’ve learned countless lessons, but none more powerful than realizing a love for your child can redefine the limits of what you believe you’re capable of. Now, our goal is to share these insights, offering support and encouragement to those who, like us, are finding their way through the storm.
For anyone walking a similar path—whether it’s epilepsy, another chronic illness, or any battle that life throws your way—I hope you find your own way to keep dancing. Even in the moments when the music feels distant or the steps feel impossible. There is beauty in the persistence, in the act of refusing to give up.
For us, our son, and for our family, we will keep dancing. We will keep fighting, advocating, learning, and moving forward together. And I know, no matter how difficult the journey becomes, we will find a way to make this dance our own.
Laura, Raising Keto LLC
Website - www.RaisingKeto.com
Facebook - @raisingketo
Author bio:
Laura is a dedicated mother navigating the challenges of raising a child with intractable epilepsy. Through her blog "Raising Keto," she shares her family’s journey with the medical ketogenic diet and offers support to other families facing similar struggles, with a focus on resilience, hope, and advocacy.
