Our Story
It was the early morning of December 28, 2018. We packed our car to the gills for a ski trip to Michigan where Landon and his sister Luci could try out the new ski equipment they received for Christmas. We piled into the car around 4am, found an open Chik-fil-A after a couple hours on the road, and soon after, everyone except our pilot Brian fell sound asleep.
The next events are both blurry and burned in my brain, which still seems crazy to me - how could it be both? Everything happened so fast, yet when I play it back in my head now, it runs in slow motion. Life is full of these opposites - the worst day that somehow leaves you feeling the most thankful.
The first thing we heard was a horrible noise coming from the backseat. I awoke, turned and saw Landon having a massive seizure. Understand that he had never had a seizure before, so my mind was completely lost. Brian pulled to the shoulder, I called 911 and Brian pulled Landon from the car. In the meantime, two good Samaritans pulled over to help us, as they could tell immediately that we were not pulled over for minor car trouble. Landon's seizure lasted roughly 15 minutes and he was unconscious for another 5 minutes or so. This we now know is way too long for a seizure to last without rescue medication. Thankfully, he awoke and is still here with us today.
We ended up at Toledo Children's ER where initial tests didn’t show anything - CT scans and blood tests were all fine. We then had to get back in the car and go home to Cincinnati. We wanted to go home, but we also desperately wanted answers and we wanted them NOW. It was not easy…
Back home, while we waited for our EEG appointment with Cincinnati Children’s Hospital, I either slept in Landon’s room, on his floor next to his bed, or in the hallway outside his room. At this point, I just could not imagine what could happen to him if he had another seizure and we were not with him. Once you have seen it happen to your child, you realize you have to be there to help them through having one; you want to be with them at all times, no matter how exhausted you get.
On January 8, 2019 Landon turned 15. The next day he had his EEG. On January 10 we met his neurologist for the very first time. I never imagined that he would get the news that we received that day.
You have epilepsy.
My stomach dropped, my eyes filled with tears, and for a moment I couldn’t hear what the doctor was saying. THEN I realized this wasn't about me. I looked at my boy and sucked my tears back into my eyes and told myself to cry about this later. I’m sure he was scared and had just received a life changing diagnosis; he didn’t need his mom crying.
We listened, we gathered all the information we could, we read everything we could, he took his meds religiously, and we tried to just move on. And I was STILL sneaking into his room at night to sleep. The worry about your child having a seizure does not stop.
My name is Landon Mohr. On December 28, 2018, I became part of the epilepsy community.
While driving to a ski trip up in Michigan with my family I had my first seizure. I don't remember anything about my seizure; the first thing I remember is being propped up on the side of the highway, extremely dizzy and confused. I was taken to the local hospital and was later sent home after initial tests checked out normal. A couple weeks later I was diagnosed with Epilepsy. My normal life took a detour.
Living with Epilepsy was at first extremely scary and nerve wracking. Not knowing when you may have your next seizure, taking lots of medication that includes side effects, interacting with people who don't understand epilepsy, and navigating all the unknowns around a life-changing diagnosis is a whole lot to digest.
In my first year, I suffered six nocturnal seizures. I don’t remember a single one of them. Living with a chronic illness that can only be explained to you by your parents and by how you feel in the hours and days after you wake up can be confusing - and difficult to explain - to teachers, coaches, peers, everyone. Not many understand.
However, there are so many things I can explain. I can tell you how to help me if I have a seizure. I can tell you how to treat people with epilepsy. I can tell you how people with a chronic illness are capable of everything everyone else is capable of doing. If you see me taking my meds before a soccer or football game, just know that it’s imperative for my health.
I’m not ashamed. I’m not embarrassed. I have epilepsy.
1in 26 people do.