Paul was not always super ambitious. There were a lot of times he just wanted to sit on the couch watching TeenNick, Hannah Montana, or iCarly. He would sit on the couch with some electronic device and the TV on for hours if you let him. Binging on Cops was another favorite way to spend time. Sometimes he had to sit, so he could recover from a surgery, but we could see early on this was not good inertia and we needed to keep moving.
Both Kathie and I started working out to keep in shape because of Paul. Kathie started with roller derby and a personal trainer. I worked with a trainer at work. To fully experience some things, Paul needed help. For example, we had good Brewer tickets for one game a year through Roth Kase, and there was no way to get a wheelchair down there, so we backpacked him. Same with the Packer and Badger tickets that we would get from friends or the American Family Children’s Hospital. We had the mojo of Paul, so I don’t remember ever actually buying tickets to anything. If the seat was not accessible for his chair, we would hide the chair at the top of the section as best we could and piggy back him to the seats. As he got bigger, we had to get stronger. We started working out because of Paul and we work out still. His challenges made us physically and mentally tough.
School fieldtrips were always a challenge. One time, the class was going to the Platteville mining museum. When the letter came home, Paul was excited, but Kathie’s radar went up. That didn’t sound very accessible. She called the museum and they confirmed that the museum was indeed accessible. There was a video Paul could watch while the other kids toured the mine. Insert colorful Kathie language here. There was no way Paul was watching a movie while the rest of the kids went down to the mine. We learned the mine was 4 stories of stairs. I reasoned it was easier for me to carry him up because my quads are bad, Kathie figured it was easier to carry him down because gravity was on her side. Whoever wasn’t carrying Paul had to carry the wheelchair for that part.
We made it, Paul had a grand time wheeling around the mine. Some areas he couldn’t get to and the other kids helped him out while Kathie and I tried to catch our breath. Right after this we went to the big M on the hill. We got him from the bus to the base of this hill and I think the bus driver or somebody helped with that. He was happy with that, and we were too wore out to go any further.
The other memorable field trip was one that I did not attend. It was a ROPES course and Paul did great at some of that. It was a very proud moment to watch the video of him shooting through the air with the other kids cheering him on. He was flying. There are photos of that floating around somewhere.
We learned early on that the exercise of setting goals was mostly a waste of time with Paul. He was awarded the “Go with the Flow” award at camp this year and that is a good description. He was opportunistic, so that is what we learned to be. Whatever came up, we would do our best to be prepared and figure out how to handle. Whatever was in front of him, he immersed himself in. Therapy, swimming, sports, or (if you were lucky) you, got full attention. Maybe because the way his brain worked, or maybe just because he was a male, he didn’t multitask well. I think that is one reason why people liked to be with him. Along the way, we were grateful to all of you for taking the time to work with, go on adventures with, or just hang out with Paul. I think we now see more clearly that the feeling truly went both ways. Thanks to those of you who shared those experiences with us the last few weeks.