Barbara Bergstein has worked with families of disabled children for over 30 years. She has served as a board member of the Autism Society of Los Angeles and spoken to parent groups about the rights of children with disabilities. Barbara is also a practicing attorney specializing in estate planning for individuals with special needs. She is frequently consulted by other law firms on the uses of Special Needs Trusts to protect government benefits for disabled children and adults. Barbara can be reached at her website.
I have suffered many losses. My parents died within a year of each other, first my father then my mother. The year after my mother died, my brother died of lung cancer at age 63. I am now an orphan and the sole surviving member of my family of four.
Then the greatest, most devastating loss occurred: my daughter died at age 36. We expect our parents to die before us; it’s the natural order of life. Losing a child is not part of that order.
Amy was born developmentally disabled. Her life was challenging from the moment she entered this world. She did not like to be touched, she had trouble feeding, had difficulty sitting up, walking and talking. All of her milestones were delayed. I grieved for the life she would never have, for the woman she would never become. I grieved for my son who would not experience a “typical” sibling relationship.
Doctor after doctor painted a grim future. But I was determined that Amy could and would do more than what was expected. She went through special education, graduated high school and lived in her own apartment with support staff. She was never able to live fully independently.
Amy was never able to have a job, but she attended an adult day program where she had friends and was adored by everyone who worked with her. She had a wonderful sense of humor and made people laugh. Amy’s impact on the lives of those who were blessed to know her was profound and remains to this day. My son believes that Amy came to terms with who she was, her limitations and the journey she was on.
Amy’s challenges remained throughout her life and over time her condition deteriorated. It has been nearly nine years since Amy died. But it took me seven years to grieve her. After she died I threw myself into work, into new hobbies and pastimes. But grief waits and it waits and it waits. For the past two years I have been in grief therapy. It has been the most difficult, gut-wrenching experience reliving Amy’s journey, trying to explain to my therapist the essence of who Amy was and how difficult life was for her. Until I began therapy, I could never cry. Now I cannot stop crying.
My grief for my child has been on many levels at various times, even while she was alive. Mostly I grieved for my child because her life was so difficult, so challenging. She deserved to run and play like other children, experience the fullness of friendships, have a first kiss and travel the world. I wanted more for her. And yet, it was Amy who became my greatest teacher. She taught me patience, tolerance and unconditional love.
Every loss is life changing, be it a parent or a spouse. Losing a child is like losing a part of oneself. I have not felt “right” inside since my child died. There are still places that Amy and I frequented that I am not able to revisit. I miss Amy every day, and will for the rest of my life. And I will always hear her say, “I love you mom, you’re my best friend and I love you.”