With spring approaching we are remembering all that happened last year. Gay started having what we now know were seizures on March 30th, 2020, the same time that Michigan State University went remote because of COVID and we had to stop having staff in Gay’s home to protect them, Gay, and our family. We are so thankful that Amy was able to work from home the next 6 months, and with help from Mom & Dad and our friend Liz were able to care for Gay in her own home for a couple of months. Then, despite COVID, we needed more help as Gay’s illness progressed and it took more than one person to physically care for her. We are thankful for the staff members that were willing to take the risk to be in our home, ensuring Gay was able to engage in as many activities as possible.
What was striking about those last 6 months was the ways in which Gay strove to maintain her independence. “ME-SELF!” she would often proclaim if you tried to do too much for her. Gay’s parents intentionally instilled this sense of independence and supported her making her own choices whenever possible. We discussed Gay’s choice to use a wheelchair for mobility in previous blogs and the beloved school bus also gave her a sense of freedom. In addition, every day there were opportunities large and small for Gay to participate in activities that encouraged her sense of self, connected her to daily family activities, and supported social activities in her community.
For example, Gay helped with laundry in her own apartment in Manistique, going to the laundry center in the building. Torey, one of her most recent staff, had Gay throw the Tide Pod in the wash and all cases Gay would proudly carry the laundry on her wheelchair to the laundry room, “ME-SELF”.
Gay loved to help make iced tea for dinner by pulling a tea bag out of a pre-opened packet and placing it in the filter, it allowed her to be a part of making meals. And, oh, the joy of eating her favorite snack, "POPCORN", by helping to giggle the Jiffy Pop on the stove (with lots of supervision of course). Amy remembers the day she was at work and received a short video of Gay’s great pride in helping Kyra prepare a lunch bag for Gay’s day at the local program in Chelsea, “ME-SELF”!
Gay loved her showers and was almost always thankful for the effort, she would “help” wash her own hair and direct your every move, in the end showering you with kisses. At times she could be a little cranky about you being all up in her business (anyone who has literally had dozens of people see them naked and give them a shower would probably feel the same way). Gay found ways to use her voice and tell you what she needed, “ME-SELF”. She was also very proud to stand up by herself when transferring to the toilet and was strikingly determined to do so even as the brain tumor made it more and more difficult.
And Gay loved to adventure and have fun after you would get through what Mom remembers was always “NO” first. But then with Mom’s assistance and creative solutions Gay would end up picking apples, roasting marshmallows on a campfire, bowling, going to movies, going to prom, eating out at Panera, Applebees ("BEEEEES"), Olive Garden, A&W, McDonald’s or getting frozen Mocha or Ice Cream to have with Dad watching the waves on Lake Michigan, all “ME-SELF”.
She would razz her Dad, paging through the local ads and then begging for Dad to take her to "KOHL’s" (her favorite place to shop for clothes). She also loved sitting on the deck drinking Root "BEER" on Friday nights with Steve and Amy, our weekly happy hour event the last several years, or adventuring to Spicer’s Orchard with Amy and Liz, tolerating all the crowds to shop (she was not a big fan of being around a lot of people as she grew older) and taking a sip of cider at in the tasting room.
And Gay, likely an introvert like her sister and her Dad, loved to watch a movie “alone” in her sitting room at the house in Dexter, talking out loud and actively interacting with her favorite films: any Hallmark movie, Mrs. Doubt Fire, We Bought a Zoo, Prancer, Riding the Bus with My Sister, The Chronicles of Narnia, The Snowman and The Polar Express (which of course she watched with her favorite, "HOT COCOA"). More importantly, Gay would spend countless hours “reading” her books in her "ROOM". Gay’s parents, family and staff would create audio cassette tapes for what would become a become a library of over 100 books. Some of her favorite books that last year were Pete the Cat books made by Uncle Dick Aunt Karen and cousins Kim and Dan, including all the props!
Even though there were many interventions by family or staff to pick up a dropped book or tape, or assist with a problem cassette player, Gay would be so pleased with herself when she could pick out a book, matched by stickers to a tape, put the tape in the tape recorder and follow along with the book, shutting the door to her room to be by “ME-SELF”.
In the last days of her life, Gay didn’t say "ME-SELF" often and for the most part gave in to letting us assist her and even to taking naps (Gay was NOT a fan of naps). However, if she fell asleep in the chair unexpectedly (after being in the hospital all night), she would still get mad (shaking her fists in the air upon waking) and even gave one final stand in tears for Dad and Amy the night before we called hospice. In Gay’s final find days we helped her find peace, relief from the pain in her head, and what she knew, and told us, was her place in heaven, "ME-SELF".