September 11, 2014
I enjoy looking at my past. Life has been full. I have great friends. I attended college and medical school, married Betsy, and raised three delightful children. My career exceeded expectations. Life is good, but not predictable. One day Betsy and I realized our son was developmentally disabled. Dreams and expectations changed. Fear, frustration, anger and loneliness moved into our home. Hope and love did not change but were always challenged. Some nights we went to bed thankful only that we survived. We knew our son's life would not be as full and rewarding as ours had been. How would he, and we, achieve joy and independence?
Life with a family member with developmental disabilities has taught Betsy and me. We learned that our biggest concern is security for our children and ourselves. We learned that a joyful life is precious and fragile. We learned that relationships are our most precious gifts and that the quality of our lives is measured by the quality of those relationships. We learned that those values are no different for people with developmental disabilities.
Independence is an interesting privilege. How many of us treasure our independence? All of us! How many of us are totally independent? None of us! We all need each other. None of us would have jobs, relationships, security or resources without each other. We all need community. Again, this reality is the same for people with developmental disabilities. The definition of independence in my mind is: freedom to enjoy who we are.
Our family is fortunate. We discovered a new supportive community in San Juan Capistrano, California, called Casa de Amma. "Casa" was developed by the Leatherby family after their son attended a post-secondary school on the East Coast and made real friends for the first time. Like so many others, their son was becoming an adult, about to graduate, and had nowhere to go. The Leatherbys toured the country looking for options and found that none offered the safety, support and relationships they wanted for their son. Casa de Amma was founded as a consequence of hope, love and need. Casa grew slowly. Lessons were learned. Visions were modified and successes celebrated. Casa de Amma was filled to capacity after 6 years of operation. Our family discovered Casa at that time. Our son was invited to join the community after a sensitive and thorough screening process. Unfortunately, there was no more room and we had to wait eighteen months for an opening. No further openings have developed in the last 30 months. Now the waiting list for Casa de Amma is sixteen anxious potential residents long. I assume each family on that list is asking the same question we often asked: "What do we do?"
Our son, now thirty-five years old, has grown impressively in 30 months. His life continues to be challenged, but unemployment has been replaced by a job. Fear has been replaced by confidence. Loneliness has been replaced with friendships and community. Frustrations have been addressed by solutions. Involution has been replaced with intimacy. He is free to enjoy who he is.
Betsy and I now wonder how to express our gratitude. We dream.... Wouldn't it be great to start another community like Casa de Amma and offer others the security, life style and relationships available to our son? Wouldn't it be great to help those who are on waiting lists or wondering how they may find independence for their families and challenged children? We are convinced the answer is YES. It will be great. It will take vision. It will take patience. It will take discernment. It can be done. We have decided to call the dream "Villa de Vida", and we invite you to join us. You can join us by being excited. You can join us by telling a friend. You can join us by offering your time talents and/or treasures. I am convinced that efforts such as Villa de Vida bring joy beyond expectation. If you have read this far you must already be one of us. Welcome!
Author: Ted Merchant