Redefining Normal – a Column by Brian Solka

Although my 11-year-old son, little Brian, has Lennox-Gastaut syndrome and is nonverbal, he lives and behaves like a royal prince. His home is his kingdom, and with me as his personal bodyguard, we march around the premises all day. After much meandering, I can tell when hunger sets in…

As I sit in rush-hour traffic, a hot Florida sun beams brightly through my windshield. Drivers around me jostle for position, frantically trying to shave off a few seconds of commute time. A cacophony of rumbling cars, beeping horns, and chattering sports radio fills my ears like nails on a…

Little Brian is awesome. As I take this time to reflect on the totality of the life that currently exists for me, I struggle to maintain a positive outlook. Lennox-Gastaut syndrome (LGS) has completely upended the plans I had for my family. My entire upbringing consisted of compiling good choices…

As we packed into the car, our daughter, Coralynn, was excited. The holidays were firmly behind us, and today was the first day of the local recreation center’s basketball season. Coralynn hadn’t played on a team since the fall, and she was ready to show off her skills. This…

As I approach the reception desk, my heart is beating quickly. My forehead muscles are tense from the prolonged furrowing of eyebrows. People are crazy drivers, and any safe arrival to a distant destination should always be appreciated. I check in, stating the patient’s name: “Brian Solka.” Growing up, my…

Brian’s birthday party is on Sunday, and he turns 6 years old! I can’t believe how quickly the time has passed. I remember holding my son shortly after he was born for our first “skin-to-skin” like it was yesterday. His squishy, football-sized, little body fit perfectly on my chest…

When Brian’s seizures returned as Lennox-Gastaut syndrome (LGS) after his initial bout with infantile spasms, the blow was crushing. After Jendi went through a very difficult childhood, I was hopeful that her suffering was behind her. My childhood was very unassuming, and almost all close relatives and friends were alive…

When diagnosed with Lennox-Gastaut syndrome, our son, Brian, was still developing normally. Every day built upon the previous day, which was amazing to watch. His episodes consisted of dozens of small tonic seizures, but he usually recovered quickly. The hope was that we would maintain this upward trajectory. His…

As an old episode of the TV series “The Office” plays in the living room, my daughter, Coralynn, is falling asleep on the couch. Her mom, Jendi, is locked into her laptop, diligently working on her school lesson plans for the rest of the week. I’m on the recliner starting…

On my son Brian’s first day of kindergarten, he woke up nicely, babbling to himself in his bed. When I heard him singing to himself, I jumped out of bed and administered his first dose of morning medications. I took him to the potty, then walked him to his…