This blog, about babies, was a surprisingly tough and emotional one for me to write. A topic deeply personal for both Gay and me. But in struggling, my purpose and goals for writing these blogs are gaining focus and clarity.
It’s that time of year when the seasons are changing and there is a focus on community, family, friends. The purpose and tenor of these blogs is shifting in my mind as well. I have a friend, a brilliant academic and writer who is raising a differently abled person, with whom I discuss my thoughts and goals in telling Gay’s story, my story, our story. During our most recent conversation I realized that in sharing the parallels of our lives, I am hoping to highlight Gay’s abilities, her strength, those things not often recognized as valuable and important in society but deeply connected to what makes us human. In addition, I also want to bring forward the ways she shaped me, our family, our friends, and the influence she had on how we saw and interacted with the world.
Like many of us Gay loved BABIES. She couldn’t wait to hold them, loved watching them, and was excited for expecting parents. I remember clearly, how nearly every person in our lives was so gracious in sharing their pregnancies and their babies with her. Cousins, friends, caregivers, everyone who encountered her. She always had BABIES in her life, even if she couldn’t have her own.
And she very much wanted to have her own children which was a complicated matter for her physically and developmentally. I have vivid memories of my Mom trying to navigate that conversation with Gay, asking Gay what she would do if the baby cried, if it made a mess in its diapers. Gay did not like the idea of either of those things! But, you could see her wrestling with her strong desire to be around BABIES, to have her own baby. Many people unwittingly would talk to Gay about getting married and having her own babies not understanding the implications or the impact those conversations might have for Gay. I admired the way my Mom would have open and frank conversations with Gay and how she consulted with Gay’s teachers, Gay’s doctor, and with others, to try and navigate these difficult waters.
Those conversations and the decisions my parents had to try and make for Gay certainly influenced how I saw and experienced the world. I was a teenager when those conversations were happening. Gay was three years older than me, and I remember, as my parents started searching for a place Gay could live independently. We began having conversations with teams of staff at the school and with the behavioral and mental health team about birth control for Gay, if she would be required to take it as part of living in the home. What were the possibilities for sexual encounters in the home? Were the men in the home instructed on safe sex and birth control? Would Gay even be able to enjoy a sexual experience with someone? How would we know? How could we know when communication was so difficult for her?
My parents involved me in those conversations so that I could share my perspectives as a young woman who was dating, making my own choices and decisions about relationships. I felt fiercely protective of my sister, I felt vulnerable around men as a young woman and had been educated on how to protect myself physically and emotionally. Gay could not protect herself physically, couldn’t tell someone what she liked or didn’t like with the subtleness that comes when people are navigating deeply private physical and emotional spaces. In fact, Gay did not do well in the group home environment which was just devastating to my parents who had spent their time not only raising Gay and me, but also building group homes and support programs for other differently abled adults.
It was during that period, that I realized my life would be shaped by a strong desire to make sure my sister was safe and happy for the rest of her life. And watching my parents, I knew how much time and effort that would involve. At 16 years old I made the decision not to have children of my own. I worried that I would not be able to give them the love and attention they would need as I supported my sister’s safety and independence. I admired my older sister, she was my inspiration, my compass, my heart, and soul.
If you read the blog about Sisters and Butterflies you will come to know much of the rest of our story from that point forward. I pursued my education and sought to make the world a better place for people. I knew the time would come when Gay would need to live with me. We both found support, love, and community in the people around us. We both have been able to give emotional support others as they raised their children and delighted in watching little people grow into wonderful human beings. And I ended up having two amazing non-biological children in my life and was able to experience the joy of having people share their children with me.
Gay received great joy from how others shared their babies and lives with her, and it sustained her. And while there were people who weren’t tuned into Gay’s desires, two special people in our lives, Kris and Richard Stone did the most thoughtful and beautiful thing for her. Gay always had a crush on “Little Richard” as we called him. When Kris came into his life, she was tuned into Gay’s crush, even stopping as she walked down the aisle on her wedding day to greet Gay.
And then Kris and Richard became
pregnant, and Kris was worried about being around Gay and how Gay would feel about the pregnancy. Kris and Richard addressed this by taking Gay out for a boat ride, had a private conversation with her, and let Gay feel the BABY growing inside Kris. When I think of that gesture from loving friends, I believe that through others’ interactions with Gay that she also brought them joy and more importantly helped others see beyond what could be perceived as her limitations. They saw a beautiful, joyful spirit, someone who loved deeply, felt deeply, and who just communicated it in a very different way.
Gay’s delight in BABIES ended up expanding the definition of family for both us and I know it’s made a me a better a leader and friend as I have supported others whose definitions of family don’t fit within societal norms. Love is more expansive than biological and physical boundaries. As I live the rest of my life, I am determined to give my love to others with the same attention and energy Gay shared it with me and everyone around her, including but not limited to all those BABIES!
To the Stone Family, Daniels Family, Horn Family, and all those who shared their BABIES with Gay, thank you for bringing her so much joy and happiness.