“And all over the world, girls are more likely to be told to be quiet, to sit down, to have
smaller dreams. Don’t listen to those voices”
From one of Gay’s favorite books:
“She Persisted: Around the World” by Chelsea Clinton
If you have been reading the blogs about Gay then you know that she chose a wheelchair as her way to be mobile in the world. As my parents recall, she went from crawling on the floor at school (acquiring over 36 stitches in just 3 years from falling forward and smacking her chin on the floor) and ideas about walking with thigh high braces and lots of potential surgeries, to loving the freedom her wheelchair gave her.
Her first wheelchair was a simple chair from the Easter Seals of Toledo, Ohio where our family lived at the time. And through the years of Gay's life, she went through many wheelchairs, trying to find what felt good, what was safe, what fit her body, what was easy to pack up to take with us, and always searching for that elusive cherry red color that she loved. An electric chair was dangerous because Gay had trouble controlling it and sturdy wheelchairs were often big and clunky, almost impossible to load in the car. Sometimes they tipped way too easy and I remember my parents constantly repairing something on them or trying to find a part when something broke. We all have this fond memory of Matthew, one of Gay's wheelchair “doctors” driving from Ann Arbor to the UP where my parents sat with Gay eating breakfast inside, watching Matthew fix the chair just outside the window. So many of the doctors and staff at the University of Michigan were dedicated to serving in this way, but Matthew was outstanding among them. There are stringent limits on funding wheelchairs so they are not easily replaced and often cost as much as a small car, meaning every small adjustment matters. Once a chair was ordered it could take months for it to be approved through the insurance process and then additional months for it to arrive.
All the struggles were worth it though, because wheelchairs meant freedom for Gay and the ability to say “ME-SELF” more often, which she could say quite clearly. And then…SCOOTERS entered her life ( like the one pictured for this blog, notice the red ). Gay used it in shopping malls, on a rubber path Dad built her at the farm, picked apples from it, and took leisurely rides through the forests of the Upper Peninsula where she and my parents lived for 15 years. Mom often ponders in amazement how often they let Gay go on her own for a little way or even occasionally ride with a small child (with supervision of course). When she lived with Amy in Dexter, Gay walked every day "weather permitting" and the occasions the sisters took the scooter were great adventures through the neighborhood or the Dexter trail saying hello to everyone (and going off course on occasion).
The other set of wheels that became vital for the wheelchair, and more freedom, were the ones on Gay’s vans, with ways for her to wheel that her chair right in. The first van had a ramp Dad built himself, actually he built many ramps for Gay to get in the house or onto a deck over the years. We were lucky to have such a handy Dad. Another van lasted most of the time Gay was in the UP, arriving from Canada on a big truck and including a manual pull down ramp that allowed Gay to be wheeled in from the back and to sit right behind the two front passenger seats. Amy remembers this one (the Beast we called it ) because whenever we went somewhere, Amy had to sit on the wheel hub as there were no seats in the back. (Gay delighted in making fun of her little sister sitting there by the way.) Her final van was delivered just before Gay and my parents moved back down to lower Michigan to move close to and then into a house with Amy. We will forever be moved by the generosity of our family and friends who donated $10,000 towards that purchase of that $54,000 van. It was a beautiful cherry red and had a fully hydraulic ramp. “Cherry red” often took Gay to her program in Chelsea when the van service they were supposed to provide failed. It also transported her on many trips back and forth from Mom and Dad’s house to the house of the fifty-year-old’s (Steve, Amy, and Gay), to the park, to eat McDonald’s by the lake with Dad, get hot cocoa, get some A&W (the place with the orange roof she saw long before you did), to go to the library with all those books and little kids (heaven), to see the movie Dumbo with Lizzy Liz, go to the grocery store “me—self” with her wonderful caregivers, and to all her doctors’ appointments.
And in the final 8 months of her life, Gay was blessed with the most beautiful perfect wheelchair of her dreams. It was light, fast, fit her body perfectly, and it was RED. We donated all of Gay’s equipment to other young adults with disabilities, who desperately need them. But that one, we haven’t been able to let go of just yet. “RED” as Gay called it, is a beautiful reminder of Gay’s strength, independence, positive perspective, and persistence.
Someday this wheelchair will give someone else their freedom/me-self, and Gay will dance and sing with joy using her newly minted wheels (wings) and we bet they are RED.