“We delight in the beauty of the butterfly, but rarely admit changes it has gone through to achieve that beauty.” Maya Angelou
For the longest time, butterflies have held meaning for me but until Gay’s transition to the next place, I hadn’t realized
or anticipated all the ways they would connect us to each other forever. And it’s the time of year that you can’t help to notice butterflies everywhere in Michigan.
One of the most vivid memories connecting me to butterflies was a plaque my mom gave me for my college dorm room with a beautiful, light blue butterfly and the proclamation, “you have to risk to be free”. And it was just what I needed. Many siblings of individuals with disabilities are perfectionists, working hard to not cause trouble or place any additional burdens on our family members. (I still struggle with perfectionism to this day). I was terrified to attend a place as large as the University of Michigan and leave the cocoon of our tight family with its daily rituals (built largely around Gay’s needs). And yet I was excited as well, to pursue dreams of become a psychologist, attend Wolverine football games in person on Saturdays, and to meet the academic challenges in front of me after spending high school focused on getting into the university I had always dreamed of attending.
College was both strange and yet familiar to me. We spent so much time at the University of Michigan hospitals over the years for Gay’s health care that Ann Arbor (Gay called it “Ro Ro”) felt like an extension of home. The academic environment was quite challenging for me despite all the preparation at all-girl college prep school, and I felt like a little fish from my small hometown (Ida) in a sea of a lot bigger fish who swam faster and with more confidence. As I look back, two things centered me those first couple of years, the women identified residence hall I lived in and volunteering on the children’s cancer floor at UMich Mott’s Children’s Hospital. Both gave me anchors of something familiar even as I began taking risks to meet new people and try new things. During that time, Gay was also engaged in new things, participating in the local Special Olympics, spending time with friends, and working at a local workshop. For a couple of years, the two of us attended Holiday Camp (for children with disabilities) in the summers, me as a camp counselor and Gay as a participant.
During my first year in the residence hall, I had a wonderful roommate, Gianina Cazan and a floor full of academically minded women. Giani and I connected quickly and took good care of each other. We remained in contact with each other for many years after college until she went into the army as an obstetrics surgeon, and I lost track of her.
The two of us often spent our study time at the medical school library because it was close by, quiet, and a serious, focused study space. I also remember Gay coming to campus to stay all night for little siblings’ weekend. She stayed awake all night (Gay never slept in strange places, even when sick in the hospital), fitting right in with other college students who didn’t sleep much. But we also enjoyed experiencing college life together that weekend, and when Gay moved in her own apartment (after I had finished my master’s degree at Eastern Michigan University), my mom explained to Gay that it would be like “going to college”. Gay was excited about her independence, in much the same way I enjoyed mine in college. “You have to take risks to be free” and that butterfly were firmly forward in my mind as we both navigated our newly found independence.
While Gay became the most independent person she would ever be in her lifetime, I took a huge risk and moved away from my family (who I worried about constantly, anxiety has always been firmly woven into my existence). My thought at the time was that this was my opportunity to explore something outside of Michigan and really find out who I was after my first marriage ended and I had just completed 6 years of full-time work in the residence halls at the University of Michigan. I knew that the clock was ticking for me and that eventually my parents would need me to start taking over Gay’s care. At the same time, Steve, Kerri, and Brennan came into my life and the journey outside of Michigan took me to Maryland (not to California or Arizona as I had originally planned). In Maryland, I made many new friends and colleagues who remain incredibly close and dear to me, including my friend Mandy with whom I went to get my first tattoo, a butterfly. “You have to take risks to be free”.
During the 15 years that I lived in College Park, Maryland and Gay lived in Garden and then Manistique Michigan, we both grew and developed into strong, independent women. Steve and I made many trips to the Upper Peninsula of Michigan for vacations and holidays. In between those trips I would fly out to help with illnesses, or to battle the mental health system, trying to protect Gay’s independence along with her health and safety. My anxiety increased to unhealthy levels sending me into therapy and requiring medication to manage the panic attacks. Even through all the challenges, I was pursuing my Ph.D. and Gay was cheering me on in her own way. I will never forget how proud she was when in 2014 I finally finished almost two decades of attending college, earning a doctoral degree in Higher Education Leadership studies.
As I ended my dissertation research about women presidents in community colleges (who took many risks while advancing in their careers) the ability to support Gay’s care and independence was quickly unravelling and our families began planning for a move back to southeast Michigan from the UP and Maryland. I was able to restart the next phase of my career at Michigan State University and began the process of building a house that would support Gay’s continued safety and independence. “You have to take risks to be free.”
The last 3 years of Gay’s life was quite challenging for me as I blended my fierce love for her and my parents with a demanding career and support systems of family and friends scattered all over the country. We built a beautiful “cocoon” that gave us quiet, peace, and beauty during extreme stress and anxiety over the future. Sitting outside watching the birds and the butterflies was a joy we shared as sisters. We also liked putting images of butterflies in our house and Gay had beautiful butterflies across the wall in her room with the saying “Spread your wings and fly” that she looked at and pointed to every day during a bath or transfer.
And the meaning and connection of butterflies with our lives as sisters, as independent women, would all come together in the final months of Gay’s life. We both had many wonderful teachers in our lives, and Gay’s favorite teacher, Pat Cole, found something beautiful for Gay to experience through her illness and pain, monarch butterflies ready to emerge from their cocoons and fly.
All the people most connected to Gay during her final days in this place (Pat Cole, my parents, me, DeJai, and Liz) acquired the most beautiful memories around watching Gay study, delight in, and release those butterflies. We have many pictures, and new tatoos, to remind us of those days, both the joy and sadness, as Gay prepared to be in flight forever.
During that time, my mom also reminded me of something I had forgotten about, a cold, snowy winter many years ago when a single beautiful black butterfly with bright blue accents had appeared in our farmhouse in Ida.
And there we are in pictures, Gay and I, future educated and independent women in our frilly dresses, enjoying a rare and truly miraculous moment where a butterfly, under impossible circumstances had spread its wings to fly.