The Reluctant Author
I hadn’t gone looking to write a book. And although I love to write, especially poetry, and editorial responses of educational articles, writing can be arduous and was never cathartic for me. I would rather take pictures. My dream was to be a veterinarian, to heal, support positive training, and be the voice for those who spoke a different language. God had that same plan, albeit a very different path.
Life can be messy. It can flip your world upside down in an instant and force you into situations that could ultimately break you if you let them. My family experienced one such life altering event when my little brother, Bruce, was born. He wasn’t like David, my other brother, or me. You see, Bruce had down syndrome. While our parents struggled to come to terms with what this meant for their future and the challenges they would now
have to face, David and I saw our newest sibling for who he was – a special, wonderful gift. I was an immediate advocate fighting to keep him from being given away and then for inclusion despite inconveniences
or discomfort for those, speaking a misunderstood language. After sending my brother to live in a KenCrest Group Home, he slowly began to became an afterthought for my parents, and I didn’t want that to be the case with the rest of my family. He was involved in David and my life and we in his, and he was just as committed to us as we were to him. We all flourished alongside him, and I wanted to honor him and his story.
My plan to include Bruce with others was to open his world. We accomplished so much more, my baby brother and I. We opened theirs.
Living only a forty- minute drive from Bruce’s group home allowed for Sunday visits and family dinners with my daughter, husband and me, phone calls with his nieces living in Florida and France, and holiday visits with my son’s family when they visited from Florida. However, what I feared most, his becoming an afterthought, happened after my move to Florida. No one made time to see him, I was no longer there, the voice with whom to reckon.
Now with his death, I was more determined than ever to keep my brother’s memory alive so my children, grandchildren, nieces, and close friends who knew of him, but never met him would remember Brucie. Vail, Colorado, my home during the summer months was my refuge when Bruce was diagnosed with cancer, COVID preventing any visits to the hospital but guardianship offered constant communication with doctors and hospital staff. Nothing got done without my approval, constant support from the nurse and personal advocate from KenCrest readily available. I hiked those trails with a vengeance, miles of climbing, listening to The Killers, dancing with the forest nymphs, crying and reliving our life together. My Inspirational Moment took hold and I was driven to write this memoir about my life with my very special brother, filled with these stories from my memories and those closest to Bruce. That is when I also realized so many who had loved and cared for him, his KenCrest family, and now mourned his loss as well would have a way to share him, read about him, and hear his voice within these stories. The challenge, how to write a memoir that told the story in the most positive light while sharing painful experiences, the good, bad and ugly and not sounding resentful or bitter. Of course, there were angry moments and not sharing those would be dishonest, especially at my age of thirteen, reliving the beginning and feeling guilty having left David for college. Our parents were gone so I was not burdened with the fear of hurting them.
“Listen to Me” was Bruce’s mantra to be heard and understood as individuals with down syndrome struggle with an enlarged tongue preventing many words to be pronounced correctly. The subtitle, ‘How My Down Syndrome Brother Saved My Life’ is in reference to the voice and passion I developed throughout my life because of Bruce. It was because of the continuous need to advocate for my brother when I was younger, I eventually learned to have a voice and advocate for myself. As an adult, I had passion and a drive to make Bruce feel as normal as he could, and through that I learned patience which ultimately led me to become a teacher, coach and Administrator with the School district of Philadelphia. I don’t know what kind of life I could have had if Bruce had been born normal, perhaps I would have become a veterinarian, but I doubt it would have been as purposeful as it turned out to be.
For more than fifty- three years, Bruce lived a life full of love, laughter, community, but also pain and hardship as he battled kidney disease and pancreatic cancer. He fought his diagnosis with a smile on his face, but ultimately, cancer won. I never meant to tell this story, to share the beginning of Bruce’s and my journey. My family knew the middle and, of course the end, but not what created the drive, the fire they admired to ensure his inclusion and my guardianship. But, sometimes something or someone touches your heart, your deepest soul, and you just know their story needs to be told. The angst of not telling outweighed everything else. For those who have lived with, loved, and lost handicapped siblings and family members, I share your pain and revel in your joys. This is that story.
