When I was told that I had given birth to our first daughter, I was thrilled. When I was told she had a birth accident and that she was probably going to be severely disabled, I was devastated. It was the worst moment of my life. All I wanted to be was a mother, a good mother. I was 20 years old and barely able to handle any child, let alone a child with a severe disability. The rose colored glasses I wore shattered into thousands of little pieces, leaving me feeling bereft and shocked and beyond belief. My husband and I clearly were not prepared to handle what was to follow over the next several years.

I was a parent who anguished and wished that Dana hadn’t been born disabled. I felt guilty and sorry for me and sorry for Don and me. I was ashamed of the way I felt. I had no idea how to manage or handle her. I worried about her and thought my life and hers was doomed. The future looked so bleak for all of us.

I didn’t know it then, but it was also the moment my real life’s work began.

Many books have been written by parents about their children with disabilities. They write about how to deal with the specifics of managing the impact of their child’s disabilities. I wrote Dana’s Legacy, From Heartbreak to Healing, Strengthening Families of Children with Disabilities with that in mind, but also to help anyone going through difficult challenges. I found that although the traumas vary, the feelings are the same. At first, no one believes they can survive their challenges without becoming permanently damaged by the pain they are experiencing. Initially they feel as though they can’t go on, and it is even more difficult when their child is affected.

There is no doubt that the overwhelming challenges and struggles facing parents of children with disabilities create a ripple effect throughout the entire family from the grandparents down to the siblings and the child. Everything seems to spill out and over everyone and yet there are surprising stories. Despite marital strife, sibling reactions, negative public attitudes, and more, (you name it) these parents have learned through their own small “failures” and their child’s bigger successes how to appreciate the child within. Over time, disability stops looming larger than their child as their pride and joy grow with even the smallest accomplishment.

One would think that parents might be destroyed just as I thought I would be, in the beginning. It’s true that most feel frightened, lost and helpless as they look to the future. Their path takes them through grief and isolation, but over time they begin to learn to trust themselves and learn what to do. The divorce rate among parents is very high, understandably, but some broken marriages can be saved. By reaching out to other parents, they learn how others manage and cope, mostly to try not to be superhuman, but only human. They learn they are not alone. Someone has been “in their shoes” before them, to help guide them. Yes, we make mistakes and hope to learn from them. In fact, if we pay attention, life can be a good teacher and a good friend. We must learn not to think too far ahead, but rather to consider what is necessary for now. None of us know what the future will bring, and the past is already gone.
When I realized that my worse fears didn’t develop, I realized I had wasted my time fantasizing about “what if”? We must learn to trust ourselves and to develop self-confidence and know-how. Parents are the experts when it comes to their children.

“Dana’s Legacy, From Heartbreak to Healing” tells stories about parents, and describes their struggles with ambivalence, anger, and hopelessness. It also describes their courage and steadfast belief in their children. The disability is always there, but takes second place to that little person inside. The families with whom I’ve worked have taught me volumes about strength and endurance, about hope and dreams, about resiliency and never giving up. These parents are ordinary, yet extraordinary. They just keep going.

My hope is that by distilling some of the lessons I’ve learned, you’ll be able to minimize—but, I’m sure, not eliminate—the grief. And, it’s hoped, you will find, sooner rather than later, the inner strength that will get you through any disheartening experience.