09/06/2026
When Charlotte was diagnosed with epilepsy, it felt like our whole world became epilepsy.
I had loved my work in healthcare and supporting my team, but after her diagnosis, so much of life suddenly felt trivial. I dove headfirst into epilepsy advocacy, learning everything I could and trying to turn something terrifying into something meaningful.
Back then, I couldn’t have imagined feeling this invested in something as wonderfully normal as our school PTO.
But being part of our PTO board has honestly been such a gift. It keeps me grounded in our day-to-day life, gives me another place to care deeply and make a difference, and reminds me that I can still carry the fear that comes with being an epilepsy parent while letting the rest of our life be full too.
We’ve also been incredibly lucky with the teachers and school community surrounding Charlotte, and the more they show up for her, the more I want to show up for them.
So if you’re still in the part where a diagnosis feels like it has swallowed everything, here’s your hope:
It may always be part of your world.
But one day, it won’t be your whole world.
Life gets bigger again. 🤍
