A recent family vacation gave my daughter an opportunity to do more
How an 18-year-old with LEMS challenged her physical limitations
Summer at our house usually overflows with days at the pool, cookouts with crunchy corn on the cob, and long, lazy vacations. But when our youngest daughter, Bethany, lost one of her close friends to a tragic accident at the end of June, that all changed.
After the trauma and loss, we knew we needed some time away as a family. So in late July, we stole away to the mountains of Georgia for a vacation.
Traveling has been harder since our 18-year-old daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). Trips require significantly more planning, as we have to ensure our accommodations are suitable for Grace, given her physical limitations.
Mostly, we look for a hotel that has elevators and doesn’t require extensive walking. Huge complexes are hard for Grace to navigate without the aid of a wheelchair. Oftentimes, we choose smaller boutique hotels.
We then research activities that won’t exclude Grace or be too physically demanding for her, and we build plenty of time into our schedule for rest. However, every now and then, an opportunity comes along that we know will push Grace to her limits. We ask ourselves if the experience is worth the extra effort it takes for Grace to participate.
Of course, we allow her to make that decision. But we do encourage her to seize opportunities, even if they’re out of her comfort zone. While some experiences may be physically taxing, we know they’ll enrich her life and boost her confidence. At the same time, we remind her that she’s in a safe environment. If Grace is unable to continue the activity, we’ll be there to help her.
Our trip to the mountains involved one such decision.
Challenging her physical limitations
Once we secured adequate accommodations, with few steps and close parking, we researched fun outings.
Our family has eclectic interests. Grace is comfortable with more sedentary activities due to LEMS, while Bethany loves to hike and be outdoors. We knew we’d need to limit any hiking we did, but still wanted to include it in our trip. We also hoped to visit various waterfalls in the area.
My husband, Darin, researched extensively. Questions included: How many steps would Grace have to maneuver? Could she view the waterfall without having to hike all the way to it?
After locating an accessible option, we were prepared to give Grace the opportunity to hike, but she’d also have the option to simply look from a distance if she didn’t feel up for more strenuous activity.
Once we arrived, Grace decided she wanted to get a bit closer to the waterfall, so we helped her down numerous sets of stairs. But the closer she got, the farther she wanted to go.
The air cooled as we meandered down the stairs and ramps. Grace continued on. The sound of the waterfall echoed through the trees, pulling her closer. Mist sprayed our faces. The desire to get close was strong.
It took Grace longer than most to reach the waterfall. People passed us on the path. But even though navigating the steps was physically tiring, the benefits outweighed the costs. She’ll now forever know she was capable of seeing this magnificent site.
Throughout the week, Grace chose to hike farther, walk longer, and get closer to the attractions we visited. It’s my goal to continually help her realize she can do more than she thinks — and we accomplished that on our trip.
Yes, some activities may take her longer and require some recuperation time. But she is making memories and living life to the fullest.
Note: Lambert-Eaton 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 Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.