Growing up, going camping was our thing. I will specify it as “glamping” since we had a motorhome and did not tent it, so I normally get a bunch of eye rolls when I say camping and they see that we had a camper, running water, and a bathroom.
We would spend our summers “glamping” all around the Midwest, but one thing that was a constant was a week at Indiana Beach in Monticello, Indiana. I believe I was four the first time we took a trip there, and Ton got the short end of the stick and had to ride all the rollercoasters with me because my mom was pregnant with Anthony then.
I have always been an adrenaline junkie who had the need for speed and rollercoasters, even at a young age, which was right up my alley. Ton, in his prime, was always down for a good knee-jerking, back-aching ride that would have us both laughing in stitches as we would try and go over and over. He was also the type of guy who would run anyone off the road while go-kart racing because he was determined not to let anyone pass him. I wonder where I get my stubbornness from.
There came the point when Anthony and I were busy with summer sports, summer jobs, and friends, and our camping time slowly started to come to an end. When Thor was born, though, we thought it would be fun to bring back the tradition and start bringing him to Indiana Beach and show him a bit of my childhood.
Thor’s first summer there was in 2017, the summer before Ton was diagnosed. By this time in Ton’s story, he was using a walker and a cane often and my mom and I were googling the best wheelchairs to bring with us on our trip “just in case”. We all knew things were different and that the wheelchair was necessary for him to spend days walking around an amusement park with a toddler, but we knew none of us were ready to admit that this was fully needed.
Ton and Thor spent most of the time (and Ton’s money) at the arcade, and I am not sure who had a bigger smile at the end of the trip. We stayed at a perfect cabin with a first-floor bedroom and open floor concept with a handicapped model attached. As we left that year, my mom and I made a mental note that there was a wheelchair ramp next door. It gave us hope that we could come next year, that even if this was the start of a wheelchair being used more often, there were options for places to stay.
By the following summer getting to Indiana Beach was not as easy as throwing a wheelchair into the trunk of an SUV “just in case.” The ALS Association Greater Chicago Chapter reached out to their Indiana Chapter and explained our trip. This is where I come from when I say that donations matter, and their organization helps families have moments for the future because they made this trip possible. The Indiana Chapter was able to deliver a hospital bed and shower chair to our rental to make our vacation possible. By the Summer of 2018, we had a minivan, an SUV, and a car packed with poles, motor wheelchairs, and equipment galore to get Ton out of the house for multiple days.
My parent’s bed at home was motorized and lifted his head and feet. It made it much easier to transfer and get Ton into a safe and steady position for sleep or lifting. Without a hospital bed, there is no way he would have been able to get in or out of a rental-style mattress, nor would he be safe.
Their willingness to help, the way they delivered and picked up the equipment so that we could have what we all knew was our last family vacation, is why I try so hard for people to understand how important it is to make donations or how their Care Services team does put their families first and try to give them everything and anything they can. Without their help, that final vacation, that final moment of all of us at the vacation spot where it all started, would have never been possible.
We spent the week at a place that has barely changed since I was a child, strolling around with my own child and reminiscing on how much we have all grown and changed in all the summers we have been here.
Growing up I can remember two times that I saw my dad cry; he was someone who never really showed sadness. I can relate with him a lot in the ways of being a fixer, trying to keep the emotions off our faces in front of our loved ones to help protect their emotions at that moment, even when we can barely handle it ourselves. Ton was one of eight and the oldest boy in his family, and being protective came very naturally to him, and I feel it also came very naturally to me with being the oldest.
When Ton was diagnosed, he showed his emotions often and would sometimes start to cry at the drop of a dime. Those moments were way harder than any heart-to-heart moments where you knew to expect emotions; the turnaround and find him crying moments were the ones that hit harder in the gut.
Watching Ton during this vacation was breathtaking and healing in its own way. You could tell he was soaking in every moment, taking everything in a little longer, knowing it was the last. In a way, it is beautiful to watch someone take the extra second to appreciate each moment as it passes; the extreme vulnerability in every moment makes you cherish each second, as we all should do in the first place. It was a great remember to be more present at that moment because while we all think we may have this exact moment later in time, none of that is certain.
The summer of 2019 looked vastly different. We stayed in the non-handicap cabin, we could travel without equipment, and our Chief Navigation System of Ton was no longer the annoying backseat driver. We packed up the car, now with two children, and were ready to explore Ton’s favorite place, but this time he would be watching from above. In the summer of 2019, we put some of Ton’s ashes around Lake Shaffer to ensure that he will always have an elephant ear, a corn dog, and a chance to go on the Hoosier Hurricane one last time.
Indiana Beach was a place on a map for a long time, where we knew we would be at every year starting the day after Father’s Day. That place on a map, where you could get the world’s great corn dog or speed around a go-kart track, will forever be more than a place on a map. That place is a little piece of home, a little piece of Ton.