Chasing the Merry-Go-Round (memoir, special needs, personal growth) Life moves fast. Too fast for some people. This is the true story of what it’s like to live in a world where you can’t keep up. Bobby was ten months old when my mom and dad rescued him from birth parents who were slowly killing him. He was adopted into our family after a lengthy custody battle. Instead of that settling him, it set off a lifelong struggle to find a place to belong, a place to call home. Like an old-fashioned merry-go-round, the world moved at a speed that was just too fast for Bobby. He couldn’t keep up, which prevented him from keeping a job, a roof over his head, and the basics needed to survive. The life he dreamt of was always out of reach. No one knew why. While cultural ideals of what a “normal” life looks like can distort our perspective, Chasing the Merry-Go-Round allows readers to see the world through the eyes of a person with intellectual and physical disabilities, which can often be invisible, especially at first glance. It’s a story about struggle and hope, survival and resilience, and most of all, the gift of acceptance and love.
- Why did you write this book?
I wrote my brother’s story because it is an important one. In a culture that has historically valued strength over weakness, intellect over character, and accomplishment over a simpler life, a segment of our population is systemically and repeatedly marginalized—unseen and unheard. When someone has physical disabilities that are invisible and intellectual limitations that aren’t always obvious, life is challenging in ways that most of us don’t understand. There are many people like my brother in this world. People who need a little extra help to keep up with this fast-paced system we’ve created. How we care for those who need help has an everlasting impact. If the basic needs of a person’s spirit, soul and body are met, it allows them the ability to keep their own corner of the world—their home—safe and prosperous for them and their family. This is all there is.
- Who should read this book?
Adult memoir readers who are interested in a shared discovery and paradigm shift, as opposed to just a regurgitation of ordinariness or a traumatic ordeal. Parents and siblings of intellectually disabled children and adults, from borderline to severe.
People with Narcolepsy and those who love them (approximately 200,000 Americans are diagnosed, 3 million worldwide.) Adoptive parents and siblings (135,000 adoptions take place every year in the U.S.). Advocates for human/disability rights, including those who work with the learning disabled and fetal alcohol syndrome disorders.
- What is an invisible disability?
An invisible disability, whether physical or intellectual, is one that is not obvious at first glance. There is no outward sign that fits our culture’s preconceived ideas of what determines a disability. An invisible disability causes limitations and challenges that can make ordinary life more difficult and because of the invisible nature, people that struggle with this are most often judged, misunderstood and marginalized.
- How much of the story is true?
All of it. This memoir is a true story and is based on my own recollections and memories. Bobby, my parents, and siblings provided valuable input as well. Every attempt was made to present this story as it actually happened. Excerpts from journals, personal letters, legal documents and doctor’s reports are authentic and presented as originally written.
All the characters are real, though some names have been changed. I tried my best to only tell the story of Bobby and me. While there were and are many other critical and important characters, most of whom we are related to and love very much, I did not set out to tell their stories. I will leave that to them.
- How does your family feel about this book?
My family has known about this book since its inception and when necessary, I interviewed family members to gain different perspectives on memories and events that occurred. They have not read any part of the manuscript yet, however, they will receive the first copies before the publication date. I am anticipating a positive response.
- How can this book help families with a member who has invisible disabilities?
This book will help families understand that they are not alone with their struggle. Often times, it is more difficult for family members to gain the perspective they need in their own situation because they are too close to it. My hope is that this story will allow them to see that this culture’s normal isn’t for everyone, there is treasure in everyone if we take the time to see it, and that even though you may not always get the life you dream of, it is still a life and happiness can be found in the simple pleasures of things such as, family, food, work and music.
- What did you learn about yourself from writing this book?
This story, the story of Bobby and me, was always about home. Bobby was suddenly removed from his home of origin at ten months old and has spent the rest of his life searching for and wanting desperately to have his own home, getting close at times but never quite attaining it. For Bobby, home is tangible: a place and structure constructed of a dining room, a garage, a yard.
I’ve learned from Bobby and my work with Dr. Marsha, that I have also been on a quest for home. But for me, home is abstract: an ideal constructed of the people I love. My quest has been to keep those people intact, safe, and cared for and stable. Only then could my home be at peace.
I know now that my home cannot be built on the premise that everyone I love remains in a perfect state: happy, safe, successful and peaceful. We have each other’s imperfections, sicknesses, labels, and messes. We own each other’s mistakes, regrets, failures, and bad decisions. We celebrate it all: our faith in God, good health, meals together and laughter.
Bobby changed my life. I spent most of my life trying to fix everyone and everything around me because I thought it was my job. I learned at a young age that if the people I loved were unhappy it was my fault, it was because I wasn’t good enough. And if I could fix them, I could fix me. I could be enough. Because I was caught up in making sure everybody was okay, part of that was making sure Bobby was normal with a normal life.
- Have you shared this book with Bobby?
Yes. I’ve kept Bobby involved in the process from the very beginning. I interviewed him and fact-checked all of my memories against his. He answered questions and provided insight needed to complete the manuscript. As someone who has spent most of his life feeling unheard and misunderstood, Bobby looks forward to sharing his story with the world so that people can understand what life is like for someone like him.
- What will readers ponder when they close the book?
I want readers to see and understand people like my brother, to challenge the cultural norm I explain above. Does our culture discriminate against those with borderline intellectual capabilities? Does it value strength over weakness? Accomplishment over a simpler life? I want readers’ to be inspired by Bobby’s will to survive and his ability to find happiness. I want them to discover what home means to them. Hopefully, begin to think twice before they judge someone who isn’t living their life the way they think they should—whether it’s a family member, a stranger in the grocery store or a man on a corner holding a sign. Learn from my journey that not everything is as it seems at first glance and realizes love doesn’t mean perfect. Love is enough. What is enough for you?
- Themes of this Memoir:
- Love is enough
- Home is where we all want to be
- Facing your flaws and using a crisis to understand and shift paradigms
- Dreams & what we do when we don’t get those dreams
- Resilience & the will to survive
- Life journey & self-discovery
- The questions my story discusses are:
Does our culture discriminate against those with borderline intellectual capabilities? Does it value strength over weakness? Accomplishment over a simpler life? What is home? What is enough for you?