Making the best of vacationing while caring for a child with LGS
Instead of focusing on what our son can't do, we discovered activities that work
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Caring for a loved one with Lennox-Gastaut syndrome (LGS), as we do with our 11-year-old son, Brian, comes with many challenges and limitations.
Simple outings that many people take for granted, like taking the family out to eat at a restaurant, can be very difficult to do to make it worthwhile. Theme-park trips are expensive to begin with, and for us, it’s not worth spending the money when Brian can’t even enjoy the rides.
Then there’s the issue of traveling, which is too grueling of an ordeal to even consider. In my mind, the ultimate goal of a vacation is to relax, get lost in the moment, and recharge ahead of returning to the daily grind of our lives. Yet, despite the difficulties, one of our goals each year is to have a fun and fulfilling outing for Brian and the rest of our family.
In 2023, when Brian was 9, we worked with the Make -A-Wish Foundation to take a trip to the Great Smoky Mountains in Tennessee. Prior to that, it’d been several years since we took an extended trip anywhere. That was because as Brian continued to get bigger, he kept having daily seizures. Our focus was on just getting through each day with everyone in one piece. So when the Make-A-Wish trip opportunity happened, we were cautiously excited.
Country roads
When traveling anywhere with Brian, we bring his large stroller. He doesn’t like walking more than a few steps before trying to sit down, so it’s the only practical way to take him anywhere. For overnight trips, we have to bring his special bed enclosure to keep him safe at night. Because of the large number of items we’d need to pack, we opted to rent a van and drive 15 hours instead of flying. Luckily for us, Brian enjoyed the ride, and we had no major issues during the long drive. We learned that we could travel relatively long distances with Brian that way.
When we arrived, organizers had planned several activities for us. We quickly learned that quieter, slower-paced outings were more enjoyable than navigating crowds and long lines. We found peace by just sitting with Brian on the porch and enjoying the mountain views, or in the hot tub after a day of hustling around. With the lessons we learned on that trip, we had a clearer understanding of the fun that would be possible for future outings.
Since that first breakthrough trip, we’ve taken Brian to Kentucky to watch a solar eclipse in 2024, and enjoyed a gentle snowfall in the northern mountains of Georgia in 2025. In between, we’ve taken a couple extended weekend trips to rural Florida to enjoy lakeside fishing. Brian loves sitting outdoors, and fishing next to him turned out to be a relaxing activity for all of us.
Next week, we’re headed to Orlando for five days, our first trip in over a year. While it isn’t one of our typical nature-focused outings, we found a good deal at a nice resort. We don’t have any prebooked events planned, so we’ll just go with the flow, enjoy the pool, and see what each day brings.
It’s easy to fixate on what could’ve been, if not for an LGS diagnosis. Brian can’t go down waterslides, ride on roller coasters, or sit through a movie at the theater. But he got to pet a magnificent longhorn bull in Tennessee, experience a solar eclipse, and watch from the balcony as large snowflakes gently fell on a Georgia mountainside. And he cheered us on for each bass we hooked at the lake.
Tempering our expectations and thinking outside the box helped us come up with ideas that make vacations both affordable and enjoyable for each member of the family. I’m excited to see what next week brings!
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.
