Getting to know you by Mare Ernesto
When I first learned of the partnership being formed by CUSA and RENEW, I immediately shared my interest in helping with this process. My parents, happily married to this day, made a difficult decision when I was a young child: my mom and I would move in with my grandparents and uncle who lived around the block from our house. My grandparents could no longer care for my uncle due to their own declining health. At the time that we moved in, my uncle Billy was in his mid-20s. When he was born, doctors did not expect him to live more than 72 hours. Billy had been born with a multitude of physical and cognitive disabilities including but not limited to cerebral palsy, spina bifida, limited speech, and impaired vision. In addition to us moving in, there was a visiting nurse during the week for several hours a day. She remains a member of our extended family. That experience shaped me from a young age. At about seven or eight years old, I was allowed to help in some ways as a caregiver for Uncle Billy. I learned how to use the feeding tube, and I enjoyed talking with him in our own way and making him laugh. Billy passed away when he was in his early 30s, and I was in middle school. It’s been nearly 30 years since his death, but I feel his spirit in all that CUSA does. I like to think he is watching over me and guiding me in some ways as I begin this journey as the new administrator for CUSA. Winter | 2021-2022
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