02/24/2026
The theme at Mindful Movement with Mary this month has been: Heart Center. As we wrap up this month, I want to tell you about a very special heart that my family had to say goodbye to recently:
My cousin Ben was born 11 months before me. He came into this world with an extra copy of chromosome 21, and like many children with Down Syndrome he needed to have heart surgery in the first year of life. The month I was born, Ben had life-saving heart surgery at Children’s
Hospital in Boston.
Ben and I grew up side-by-side. We played
whiffle ball, read stories, sang songs, and celebrated every holiday and birthday together for
many years.
As we got older our lives diverged, but we still had a lot in common. We both thrived with a consistent daily routine. We shared a deep abiding love for the Muppets of the 1980s. We delighted in watching the seasons change and marking each holiday with nostalgic traditions. We enjoyed artistic hobbies, though I could never match his skills as an abstract painter or thespian. We both loved our family and friends with our whole
hearts.
I was honored when his parents asked me to join his family care team in 2020. I took pride in helping to advocate for Ben’s happiness and wellbeing.
Then one day Ben’s lungs and heart were attacked by bacterial pneumonia, and on January 13th, 2026, his loving, joyful heart stopped beating. He died at Brigham Women’s Hospital in Boston, right across the street from Children’s Hospital where he had heart surgery as an infant.
Ben’s presence was a great gift in my life. While it may seem rudimentary, from day one, I was taught that we could all be different, yet equal. Keeping Ben’s warm heart at the center of our family, the message was clear: each human being has inherent worth, dignity, and value.
My heart is broken that Ben’s is no longer beating, but I will endeavor to share the shining love of his amazing heart all of my days
