Epilepsy Chose US - But Love Carries Us Through

💜 Epilepsy Chose Us

💙 But Love Carries Us Through

22 Years. Three Brain Surgeries. One Implant. A Lifetime of Strength.

In my family, epilepsy wasn’t a word we learned in a textbook

it was something we lived before we ever understood it.

Ethan was just 6 months old when epilepsy entered our world.

Uninvited. Unexpected. Life-changing.

Since then, our journey has included

three brain surgeries, countless hospital stays, sleepless nights,

and now an implanted RNS device that helps his brain fight the seizures

his body cannot control on its own.

This isn’t a story people see from the outside.

But it’s the story we live at home every single day.

💜 Living With Lennox–Gastaut Syndrome (LGS)

LGS is one of the rarest and most severe forms of epilepsy.

Daily seizures. Multiple types. Medication-resistant.

A condition that impacts development, learning, behavior, and safety.

This month, as Epilepsy Awareness Month comes to a close,

I refuse to let it end quietly.

Raising awareness isn’t optional for us it’s survival.

Anything you learn about epilepsy can save a life.

Anything you share can help a family feel less alone

💜 What We Live With at Home

Epilepsy has taught us more than fear

it has taught us patience, presence, and a deep kind of love

that grows in the middle of the hardest storms.

We’ve learned to celebrate calm days.

We track every medication.

We listen for every sound at night.

We adapt, pray, adjust, and advocate… constantly.

But we also laugh.

We also love fiercely.

We also keep going because Ethan keeps going.

💜 For the Caregivers

You are the quiet heroes.

The watchers. The protectors. The note-takers. The researchers.

The ones who hold your breath until the seizure ends.

You are love in motion.

💜 For Those Living With Epilepsy

You are not your diagnosis.

You are strength.

You are brilliance.

You are resilience in human form.

I see you.

💜 For the Community

Epilepsy deserves understanding, not fear.

Empathy is as important as medication.

Inclusion is as powerful as treatment.

At Autismo Café and through Infinite Heart Initiative,

we stand for visibility, education, and heart.

Here, epilepsy is not a taboo it’s a reality we honor with compassion.

💜 Why Awareness Matters

LGS isn’t one-size-fits-all.

Every person, every seizure, every day looks different.

Families living this journey don’t get days off —

but we do hold onto hope.

And after 22 years, I can say this with certainty:

We don’t live in fear anymore.

We live in love.

💙 “Because epilepsy shapes our journey, but it will never define our destiny.”

💜💜💜