Raising a child with LGS made me appreciate the kindness of strangers
Here are a few of those moments when random people stepped up to help
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Unfortunately, people with disabilities are not always treated with kindness. My late son, Jeff, who was diagnosed with Lennox-Gastaut syndrome (LGS) at 8 years old and passed away two years ago at 51, encountered quite a few of those people while growing up — whether it was the girl on the school bus who stuck gum in his hair or other children who laughed at him and called him “seizure boy.” But he was also fortunate to be treated kindly, and a few of those moments stand out to me.
One day when he was in middle school, I received a phone call from the bus driver who wanted to let me know that when she had arrived at home to park the bus, she found Jeff sound asleep in the back. So she drove him back to the school to get my information and let me know he was safe. Apparently, he had fallen asleep due to the many medications he was taking, but no one told the bus driver. I was so grateful that she had checked the bus before locking it up for the night.
This was only one example. As Jeff got older, other people would find their way into our lives, too.
Jeff enjoyed going shopping with me, but as he got older, he grew much taller than me, and I was always worried he might have a seizure. He never had auras, or focal aware seizures, so his seizures were unpredictable. But I couldn’t deny him a shopping trip for new sneakers.
When we’d go shopping, Jeff would always hold on to the shopping cart for safety because his balance was wobbly due to the medications. One day, we were at Target and I’d just picked up a purse to put in the cart. Within seconds, he dropped to the ground and began seizing. I grabbed the purse and put it under his head. Several other shoppers came over to help and stayed with us until Jeff came out of the seizure.
When he was 27, we traveled to Florida with my daughter, Valeri. We visited Universal Studios and enjoyed the rides that Jeff could tolerate. It was a great day, even though Valeri had to go on a few rides by herself while I waited with Jeff. When we went to the Nickelodeon show, we’d been there only for about 10 minutes when Jeff had a seizure. We took him outside, and a park employee led us to the first-aid building.
They had Jeff lie down, but I needed to change him, as he had soiled himself during the seizure. I always kept a backpack full of extra clothes for him. The people there were so kind to us. They told my daughter and me to go have lunch so that Jeff could rest, and they would take care of him. When we returned an hour later, Jeff was awake, and they had laundered his soiled clothes! I was speechless. You really realize how many considerate strangers there are in this world when you need them the most. I was so appreciative.
One other episode that stands out to me was when Jeff wanted to attend a local high school football game. We were standing in line for tickets when Jeff suddenly fell backward and had a seizure. One woman rushed over and put her blanket under his head while others went to get the ambulance. As I shook Jeff and stared at him lying there on the pavement, another woman asked if she could take pictures of the game and send them to him later. So I gave her my address.
When the paramedics were putting Jeff in the ambulance, I asked the woman with the blanket for her address so I could wash it and return it to her. She just looked at me, said how sorry she was for Jeff, and told me to keep the blanket and go to the hospital with my son.
Within a week, the pictures of that football game arrived at our house. Jeff was so happy and showed them to everyone. A stranger had done that for him — no questions asked.
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.
