In the whirlwind of early motherhood, days blur together in a haze of feedings, diaper changes, and sleepless nights. You’re learning your baby’s every sound, every expression, and trying to keep up with a love so big it feels overwhelming. Nothing prepares you for the moment something feels off.
The day my son Ryker had his first seizure at five-months-old is etched in my memory. I didn’t even recognize it as a seizure – it seemed like just a flicker, a pause. When it happened again, we knew something wasn’t right. Months of uncertainty culminated in the moment genetic testing revealed the SCN1A mutation. That’s when I heard the words that would change our lives and define my journey as a mother: Dravet syndrome.
Dravet syndrome is a rare, severe form of epilepsy. Seizures often begin between three and nine months of age and can be triggered by fever or exposure to high heat. Because Dravet syndrome is a form of developmental and epileptic encephalopathy (DEE), it introduces a cascade of challenges, such as frequent and treatment-resistant seizures, developmental delays, and movement and balance issues, which Ryker faces every day. But the hardest part isn’t just the medical complexity. It’s the emotional weight of navigating an unpredictable and often isolating condition, longing for conversations with your child or coming to terms with the fact that you’ll likely never hear them say “I love you.” It’s those milestone moments you’re watching families hit – like starting the school year. Instead of sharing “first day of school” photos, Ryker attended intensive rehabilitation last year to rebuild his strength. This serves as a constant reminder of our unique journey.
These challenges are woven into the fabric of our family’s daily life. They affect how we sleep, how we plan, how we hope. And they test the limits of what it means to be strong. However, with greater challenges come greater victories. While it is crucial to recognize the challenges DEEs present, these setbacks have also redefined my family’s definition of hope and care. Our journey is not just a challenge – it’s a testament to our resilience and an ongoing lesson in finding joy amidst the unpredictability.
At the time of Ryker’s diagnosis, I had a pretty good handle on motherhood, caring for my three older kids as well. But nothing could have prepared me for this new chapter of motherhood, one that means trading tracking milestones for counting medications, monitoring seizures instead of sleep regressions, and carrying fear like a second skin.
I never planned on being a full-time caregiver, but when Ryker was diagnosed with Dravet syndrome, I left my job. It wasn’t a choice in the way we usually use that word. It was a means of survival.
One of the most challenging aspects of caring for Ryker is the unpredictability of his condition. Every day is a delicate balance of ensuring he is healthy enough to enjoy activities every child should experience. Despite trying countless medications, it was only after beginning treatment with FINTEPLA (fenfluramine) that we saw real progress. Ryker’s seizures reduced from 10 to15 a day to maybe two or three a month. While medications work differently for everyone, it made a world of difference to our lives.
Still, life looks different. Ryker is seven now. He is non-verbal, but he says so much with his eyes and the five or six words he has mastered. We don’t go to crowded gatherings often, and my husband and I split up for ball games and tournaments with the older kids. Vacations, if we can take them, demand more planning than most people could imagine.
For a long time, I felt guilty. Guilty for saying no, guilty for not showing up, guilty for the way Ryker’s needs reshaped our family. But slowly, I’ve learned to release that. Motherhood in its truest form has always been about surrender: surrendering the picture you once had of how it would be, so you can meet the child in front of you.
Yet, amidst the challenges, we choose to see the silver lining. Ryker’s smile is contagious, and his spirit brings so much joy to our family. Therapists and doctors continue to be amazed by his alertness and happiness despite his numerous medications. That’s how “Choose Joy” was born, a campaign our family started in 2018 following Ryker’s diagnosis. Initially, it began as a mantra I scribbled down when the weight of it all felt too heavy, and then it transformed into a logo on t-shirts we sold to raise awareness and money for the Dravet Syndrome Foundation. Choose Joy is a movement dedicated to supporting the foundation’s quest for better treatments and a cure, while also raising awareness about Dravet Syndrome and inspiring others to maintain a positive outlook even in difficult times. I thought it would fade, but years later, our community still rallies around it. Somehow, amid everything, joy has become both my rebellion and my anchor. This fall, Ryker started school at a small special-needs school 40 minutes from our home. For most parents, “back to school” means backpacks and pencils. For me, it means hoping his seizures stay calm enough for him to attend, re-training his sleep schedule, and driving him myself because I can’t bear the thought of sending him on a bus. His day is only two and a half hours long to start, but in that window, he receives speech, occupational, and physical therapy. He is building a routine and walking into a classroom where every child is seen, and for the first time in a long time, I’ll have space to breathe.
Sending him off was bittersweet. For seven years, my identity had been wrapped so tightly around his care that I sometimes forgot where he ends and I begin. And yet, watching him walk into that school reminded me: he is not just his diagnosis. And I am not just a caregiver. I am his mom. I am a woman who is learning, over and over, how to let go and trust that joy is still possible.
When I look back, I see how motherhood has stretched me in ways I didn’t expect. I’ve become an advocate, a fundraiser, a therapist, a nurse, and still, underneath it all, just a mom who wants her son to experience the world in whatever way he can.
Ryker’s journey has rewritten my story of motherhood. It is not the story I thought I’d tell, but it is ours. And every day, even in the hardest moments, I return to the mantra that carries us forward: Choose Joy.
