Our daughter Holly’s epilepsy changed from mild to severe around her 13th birthday. Her seizures were formidable, and my family was absorbed in her care. Things that made our life pleasant faded away, including freedom to spend time with friends and opportunities to advance in my career and to serve in our church.
I’ve always loved Holly, but hated what her seizures were doing to her and our family. This mix of emotions made life seem impossible: If I loved Holly, why was I having such struggles coping? I learned that parents of children with disabilities go through a process of acceptance that’s similar to the stages terminally ill patients pass through in accepting their impending death. These stages are denial, anger, bargaining, depression and acceptance. Understanding that process gave me hope.
When Holly joined our family through adoption at just 7 weeks old, I was already forming a distinct person in my mind: the Holly of my dreams. She would be beautiful and intelligent, capable of doing anything she wanted. As Holly grew older, however, it became clear that she was not the Holly I envisioned. I became angry and depressed every time I was with Holly because I was comparing her to an unrealistic ideal. I was in denial.
Accepting the true Holly took several years. A major breakthrough occurred when I attended a class to help deal with my grief. We were asked to write a goodbye letter to the person for whom we grieved. I addressed my letter to the woman I had hoped Holly would become.
This is part of my letter:
You, the Holly of my dreams, inspired me to do everything I could to enrich her life. For a long time it has been clear that the real Holly will never be like you. So, I am saying goodbye to you. With God’s help, I will greet and love Holly just as she is, without continuing to put my affections on you.
Holly is now 37, and she lives in a group home about a three-hour drive from our house. My wife, Joyce, and I visit her as often as we can, and we attend some of her medical appointments.
Visiting Holly still brings up feelings of loss that never completely go away, but God gives me grace. When I am with her, I’m no longer haunted by the woman she might have been.
This article appeared in the Summer 2013 issue of Thriving Family magazine. Copyright © 2013 by Al Gilbert. Used by permission. ThrivingFamily.com.
