My son’s love for sports helped him make the most of life with LGS
Jeff loved being part of a team, even when seizures made it difficult
Written by |
After my son, Jeff, was diagnosed with Lennox-Gastaut syndrome (LGS) in 1980, my main objective was to keep his life as normal as possible.
Jeff loved all sports. He was a very active boy, learning to ride his bike at age 5 and swim at 6. He signed up to play soccer in fifth grade and was thrilled to be part of a team. His soccer picture is the cover of the book I wrote about him, “Jeff’s Story.”
I made sure to let the coach know he had epilepsy, as Jeff’s seizures were never controlled and his many medications sometimes made him sluggish. I watched him carefully at every game in case he had a seizure that others didn’t recognize.
During one of the games, I overheard a group of moms complaining about my boy not keeping up with the team. It was upsetting, and I told the coach afterward that Jeff was just happy to be part of the team; he didn’t need to play every game. The coach told me that Jeff was part of the team, and if he was able, he would play. I felt good about this coach who wanted Jeff to be treated as an equal. In the following years, we were blessed to have other understanding coaches as well.
After soccer, Jeff joined Little League baseball. Mostly, he played in the outfield, and I would watch with my heart in my throat as he was hit in the face with a ball he didn’t catch, causing another black eye.
Despite his seizures, Jeff never gave up
As Jeff grew older, his seizures became progressively worse, and medication changes were constant. We made frequent trips to the emergency department. However, he still wanted to be involved in sports, so he joined the junior high basketball team as a scorekeeper. He never gave up on being part of a team. In high school, he was the football team’s water boy for two years.
But his seizures worsened, and I’d often have to pick him up from school following an episode that left him incontinent. He ended up failing 10th grade, even though I’d been assured that his many absences wouldn’t hamper his advancement to 11th grade. School challenges are a whole other story.
In June 1990, when Jeff was 17, he underwent a corpus callosotomy at Dartmouth Medical Center in New Hampshire. That fall, we moved to another school. I didn’t know it then, but it was all a blessing in disguise. Jeff’s teaching specialist was wonderful and patient; she helped him tremendously.
He then decided to try out for the volleyball team. I spoke to the coach and explained Jeff’s condition, including the frequent medication changes. The coach took Jeff under his wing. He nicknamed Jeff “Ace” and had him serve at the start of games. If Jeff had a seizure, the assistant coach would take care of him, let him rest, and then help him rejoin the team. It was one of the proudest periods of Jeff’s life. He told the story to everybody!
Jeff also participated in the Special Olympics, walking the track and then later joining the bowling team. He was always so excited to attend events. But eventually, his seizures became too severe for him to keep bowling. The loud environment would trigger an episode before he even had the chance to play one game.
Jeff was a lifelong New York Yankees fan. He was able to meet some players with the help of Make-A-Wish, and though we tried to attend some games, we had to stop due to the seizures. I got tickets to see our local Triple-A Minor League Baseball team, but he was only able to attend a few of those games for the same reason.
His love for sports included hockey, football, college basketball, and the Olympics. Jeff made the most of his life with LGS and never felt sorry for himself. He made me so proud!
Note: Lennox-Gastaut Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lennox-Gastaut Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lennox-Gastaut syndrome.
Leave a comment
Fill in the required fields to post. Your email address will not be published.