The Flynn family, Christmas Day 2021

Guest Blog Post: Elizabeth Flynn

“About six years ago on a family vacation to Park City, my three-year-old sister Margaret had her first seizure. I can still remember the night of the seizure, every exact detail still crystal clear.

My mom had finished clearing the plates after supper while my dad and I watched some television. My grandma made her way downstairs exhausted from a long day of playing with my sister. That’s when we heard it, the noise. This strange gurgling sound coming from my sister’s baby monitor. My mom ran downstairs to her room, concern filling the air. She opened the door, scooped up my baby sister, and screamed, “Call 911! Call 911! Margaret? Margaret, can you hear me?” My parents hopped in the ambulance with my sister and then, they were gone. 

Months later, we learned this one seizure set off a chain reaction that led to our family’s life-changing diagnosis: epilepsy. Over the next few years, Margaret’s seizures continued, all of them ending in a visit to the hospital. I started to hate hospitals. The smell, the machines, the fear. I never witnessed the doctors stopping the seizures, but saw the aftermath. Waking up, Margaret’s first words were always, “Where am I? How did I get here?” Her words always broke me. After long hospital stays, I prayed that this wouldn’t happen again. 

At age six, Margaret had a left temporal lobectomy in hopes of curing her epilepsy. We relocated to Boston where we lived for the duration of the summer. Watching doctors wheel my unconscious sister back to the operating room is a moment I will never forget. The eight hour wait was an eternity, and after, the doctor stopped in the waiting room and invited us to see her. We made our way back to the ICU, and once I laid my eyes on her, tears welled up. Feeling shoved deep inside came bubbling up to the surface as all of the memories of seizures past played in my head. After a few moments, the doctors led me back to the waiting room. Time passed and my grandma and I eventually headed back home.

The whole ride home, the only thing I could think about is my need to vent to someone. Not only on that car ride but throughout my whole journey, all I wished for was someone to talk to. I needed someone who could relate to what I was going through, but at the time, I did not know anybody who had a sibling with epilepsy. While my parents helped me through it, they didn’t completely understand my point of view.

This is why I raised my hand to work with the Hauser sisters to start a sibling program with The Brain Recovery Project, in order to help a community of siblings just like me. I initially pitched the idea to my mom not really expecting anything to come of it, but now, so much progress has been made. Our first zoom meeting is scheduled for the end of January and will be attended by around twelve people. Having the opportunity to impact someone’s life is invaluable and I can’t wait to get started.” 

We’re grateful for Elizabeth Flynn and her mother, Catherine, who have volunteered their time and energy to help lead our sibling support initiative along with Erica Hauser and her daughters Jill and Brooke. For the next several months, they will meet with a small group of siblings to understand their needs and collective experiences. We will use this information to build a program that is impactful.