Real voices, Real journeys

“Sometimes I feel different, and that’s hard—but I’m learning that different doesn’t mean less. It just means I see the world in my own way.”

“Epilepsy can make things unpredictable, but I’m still figuring out who I am and what I want—and that matters more than anything.”

“I’ve had to grow up a little faster, but it’s made me stronger than I ever thought I could be.”

“Balancing independence and epilepsy isn’t always easy, but every step forward—no matter how small—feels like a win I earned.”

“I’m building a life that works for me, not in spite of epilepsy, but alongside it.”

“There are detours in my path, but I’m still moving forward—and that’s something I’m proud of.”

"Epilepsy may interrupt my moments, but it will never define my future.  I rise, I adapt and I continue because resilience is my rhythm."

"I am not my seizures.  I am the life I build between them."

“You never expect your child’s life to include seizures, but you learn quickly how much strength lives inside both of you.”

“Every seizure is scary, but every recovery reminds me just how resilient my child truly is.”

“I can’t control epilepsy, but I can make sure my child feels safe, supported, and never alone in this journey.”

"I watch my son’s eyes dart back and forth, terrified of what is coming.  At 11 years old, he has unfortunately experienced over 10 years of seizures.  His initial diagnosis was Infantile Spasms.  He then received the diagnosis of Lennox Gastaut Syndrome, a rare and aggressive seizure syndrome, when he turned 1.   But never has my sweet son hated rescue meds as much as he does now. Due to the nature of Sam’s seizures, dad gets behind him to hold him steady.  Otherwise, the seizure could possibly throw Sam forward into the walls of his sleep safe bed. Sam only has about 30% of a normal brain mass and he also has hydrocephalus.  We don’t want him to suffer with an additional trauma to the brain.  And then there’s me.  I’m a few feet away pulling rescue meds from a vial and then adding an atomizer to the syringe to spray into Sam’s cheek.  Due to an almost life long oral aversion as a consequence to being force fed seizure meds, Sam absolutely hates anything coming near or into his mouth.  He starts whimpering and crying because he knows what is about to happen.  My heart breaks because I don’t get to be “mom” in this present moment. In this circumstance, I don’t get to be the comforter when bad things happen.  Why? Because now I am associated with forcing something into his mouth that he is afraid of.  Actually, it’s more than that.  In this specific circumstance that happens 1-3 times a week, Sam is afraid of ME.  But what are my options?  I don’t have any.  So I grieve hard and love hard.  I make the most of opportunities to be affectionate and to connect with Sam outside of seizures.  But I continue to mourn the loss of Sam’s trust.  The seizure finally stops after two rounds of rescue meds.  Sam sleeps and dad sleeps.  And I pray and ask God for help and for my little boy to forgive me for doing something over and over that he is afraid of.  And I weep."

April B.

It was March 30, 2012. I was at school in seventh grade when my very first seizure happened. Iwas blessed that day to have someone who knew seizure first aid. The teachers, faculty, and most students don’t know seizure first aid. What would’ve happened to me if that one student didn’t come up and help? Seizure first aid training is very important, especially in schools.

I’m very, very proud that the public schools in South Carolina are requiring seizure first aid training. I would love to see it implemented in other schools as well. My first seizure was at a private school. What about their students and staff? I wish people would understand that seizure first aid needs to be taught everywhere.

Luci A.