Nephew Willy, 1967 – 2007 (Part 3)

Bill was a wonderful baby, and a frighteningly smart toddler. His main interest as a 2-year-old seemed to be electricity, and he rightfully earned the nickname “Plug-a-plug.” It was a wonder he did not electrocute himself. One of the family’s favorite stories was the time he managed – without anyone’s noticing – to take a “flasher” plug from the Christmas tree lights cord, and put it on another cord which controlled my parents’ television. It took them awhile to figure out why the television was going on and off.

As he grew, he continued to be the fodder of family stories, such as the time my parents had just had their brand-new harvest gold shag carpeting installed in the home they were building for retirement (this WAS the mid-70s), and Bill, who had just walked across newly-oiled asphalt, traipsed it across the carpeting. But for Mom & Dad’s brilliant friend and home construction guru & helper, Chester, and his trusty Varsol, Bill might have met his end then and there, at the hands of my mother. (I think it was that incident, and Chester’s assistance, that cemented the relationship between Bill and Chester, until Chester died a few short years ago at age 92.)

I recall when I was living in Wisconsin, Bill came out for a visit during the summer of 1977. My daughter was then a 6-month-old infant, had recently been weaned off breast milk, and was just starting solids and formula. One morning, Bill decided to let my husband and me sleep in. When I awoke and went downstairs, I found Bill holding a bottle for my daughter, full of Kool-Aid. She appreciated it, I’m sure. I didn’t.

When Bill was diagnosed with MS, he was only 30 (the common age for diagnosis, unfortunately). By the summer of 2000, he was losing some major motor skills. He could walk for a short distance with a walker, but was otherwise wheelchair-bound. We knew he was declining. That summer my partner and I brought him to Canada. Of all the gifts I have every had the opportunity to give to anyone, I think that trip ranks up near the top.

Bill had never been to Canada (or, I think, ever outside the US, for that matter). The trip was an eye-opener for me regarding accessibility. He and I went to Niagara Falls (Canadian side), took a ride on Maid of the Mist, and had a full, fun day (well, except for when I had to push Bill’s wheelchair UP the Maid of the Mist ramp – the elevators only went so far). In general, Niagara Falls was quite accessible. (By the way, the picture at the bottom of my first post about Bill was taken at Niagara Falls. He struggle to get out of his wheelchair for the picture.)

Another highpoint of the trip, both from an accessibility and fun standpoint, was our trip to Canada’s Wonderland. It was a glorious day, and Bill & I had long been roller-coaster buddies (to Don’s chagrin). We were all impressed with the accessibility features of the park. On entry, we were given a booklet explaining what kinds of physical strength were required for each ride – whole body, upper body, neck & head, or none. The only kinds of rides that Bill was unable to enjoy were those in which leg strength was required, such as a stand-up roller coaster. Obviously, they’d had disabled visitors before, and had it down to a science: the disabled patron and guests would enter by the exit ramp, thereby avoiding having to hand a wheelchair 0ver the ride, and (a secondary consideration) enabling the disabled person to avoid long lines. Our biggest regret was that it was too early in the season for the water rides. My biggest sadness that day (unspoken to Bill) was how he was just too pooped by about 4:00 p.m. to ride any more rides. It was a combination of the sun and the activity. I think that’s when the enormity of his illness initially hit me the hardest.

Our final big outing was to downtown Toronto and the CN Tower. The CN Tower is a Toronto icon, a must-see for any tourist. Bill delighted in rolling his wheechair on the glass floor, even though I declined to join him. Otherwise, it was also a huge disappointment for us from an accessibility standpoint. We wanted to go out onto the open-air deck – but there was no wheelchair access. We had to track down a worker, who then had to find someone else to find a key to open a door that would permit wheelchair access. Neither the facility nor the personnel seemed friendly to folks with disabilities.

But all-in-all, Bill’s Canadian trip was good for him, for Don and for me. The timing, be it providence or luck, couldn’t have been better. I hope that his thoughts about that trip brightened, in part, the dreary days he had ahead of him.

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