Emerson’s Story

As told by his Mom, Sarah

When you become a parent, you expect to learn new things­—how to swaddle, how to change a diaper at 3 a.m. with one eye open, and how to decode a cry. What you never expect is to become fluent in neurology, rescue meds, EEG patterns, and the ever-shifting tides of seizures.

But that’s where Emerson’s story begins: with us learning to ride the waves we never planned for and discovering strength we didn’t know we had.

The Day Everything Changed
When Emerson was born, it was quiet. There was no cry, only the sounds of medical personnel working. He was hooked up to EEG monitoring within hours. We were no longer just parents. We were caregivers. We were thrown into a world we weren’t prepared for, trying to keep our heads above water while the tides kept changing around us.

Emerson came home from NICU on seizure medications. We didn’t know what to expect. We were filled with hope for his future. Then, at five and a half months old, I looked at him, and something felt “off”. He was diagnosed with infantile spasms, which are a medical emergency, the next day.  The waves came crashing in again.

Seeing him so small and with so many interventions, something inside me broke open—but it also lit a fire.

Life Between the Seizures
What people don’t always see is how much epilepsy exists between the seizures.

The side effects. The medications. The diet changes. The waiting. The watching. Hypervigilance. The second-guessing. The hoping. The “Do I call 911?” calculations no parent should have to make.

And yet, within all of it, Emerson remains light itself—full of attitude in the best ways, proving to everyone his strength and resilience. He teaches us every day to slow down and enjoy the small things.

What This Journey Has Taught Us
Epilepsy has reshaped our home in ways big and small, and yet has also revealed a kind of community and purpose never expected.

We’ve learned the scariest moments can be used to strengthen us and bring people closer. Knowledge is power, but connection is survival. Advocacy isn’t a choice, it’s a responsibility.

Finding Purpose Through Advocacy
As Emerson’s needs have changed and grown, so has my voice. I realized navigating this system isn’t something that any family should have to do alone. That’s what led me to serve on the board of Hello Nurze, a non-profit organization dedicated to empowering medically complex families and individuals during their search for in-home nursing and to raise awareness of the pediatric home health nursing shortage crisis. Being part of this mission allows me to turn our lived experience into tangible change—supporting nurses, empowering families, and pushing for a system that truly works for medically complex kids.

Why We Share Our Story
We tell Emerson’s story because someone out there is where we once were—scared, overwhelmed, Googling in the dark. We share because awareness changes policy, and policy changes lives. We share it because epilepsy deserves a louder, cleared, more human conversation.

And we share it because Emerson’s journey isn’t a tragedy. It’s a testament.

A testament to resilience. To community. To the beautiful, messy, extraordinary courage of medically complex families everywhere.