When I became a mother to a child with epilepsy, I was thrust into a world I didn’t understand—a world that felt isolating, overwhelming, and full of uncertainties. What I thought I knew about epilepsy was not only inaccurate but also overly simplistic, and it wasn’t until Charlotte’s diagnosis that I came face-to-face with the intricate reality of this condition. For the first time in my life, I felt truly helpless.
As we navigated Charlotte’s diagnosis, late-onset infantile spasms, sought the best doctors, and explored every available support option, I was struck by how little there was for epilepsy—resources, representation, and even comfort items that spoke to the unique challenges families face. This realization led me to write Char Bear Keeps Dancing with Dr. Christopher Yuskaitis and Dr. Christina Briscoe Abath. What began as a way to process my own emotions turned into something much bigger. The book’s success not only surprised me but also became my creative outlet, connecting me with families and advocates around the world.
Charlotte’s journey has been both heartbreaking and enlightening. Her initial prognosis was uncertain, and her development was very much a “wait and see.” But the little wins—like when she began to understand and even resist EEGs—became everything. Those moments, however challenging, meant she understood her world in ways we didn’t know were possible.
We are deeply aware that Charlotte is far more fortunate than many others. While our journey has been challenging, it pales in comparison to the reality faced by so many families navigating epilepsy. It would have been easy—and at times tempting—to not immerse ourselves further. However, I owe so much to the incredible women whose stories you’ll read on this blog; their encouragement has kept me moving forward. My husband often reminds me of how we left the hospital with nothing but a bottle of medicine and broken hearts. He always says that if even one family feels less alone, knowing that another parent has been through it too, then everything we’ve done will have been worth it.
You’d think by now we would truly embrace just doing, but I kept waiting for the perfect time to launch this blog—wanting everything to be exactly how I imagined it for families. Once again, I’ve reminded myself that it will never be the perfect timing or completely ready—so here we go!
Why Keep Dancing?
Inspired by the heart of Brave Bears Club, Keep Dancing is a space to celebrate resilience, hope, and connection.
Here’s what you can expect:
Stories that inspire: Real journeys from mothers, advocates, and changemakers who have turned challenges into meaningful movements.
Resources for families: Helpful tools and support for navigating epilepsy and other challenges.
A spotlight on community: Featuring incredible initiatives, small businesses, and nonprofits making a difference.
This blog isn’t just about my story—it’s about all of ours. Together, we’ll celebrate the little wins, the big victories, and everything in between. Let’s keep dancing.
With love,
Kate