It’s been years since she died. She was just 10 years old then. A beautiful little girl with a mischievous twinkle in her eyes that seemed to ingratiate itself into your heart and immediately take up permanent residence there. She is my hero. Brave, long suffering, filled with laughter. The kind that emerges from the belly and breaks out all over the body. No holds barred. Like a wonderful rash of excitement and passion for living.
Abigail never spoke a word. She didn’t walk. Her hands were always busy. Not the way a child’s hands ought to be; with dolls and games and projects. Her hands danced the endless, useless circles of a child with Rett Syndrome. As if caught in a loop. As if trying to tell us something.
A parade of professionals traipsed in and out of her house on a daily basis, not disrupting the household routine, but rather becoming a deeply ingrained part of it. For many years I was one of them. I first met Abby when she was just about two years old. She had recently been diagnosed with Rett Syndrome and her parents were looking for a therapist who had some experience working with girls with this genetic disorder. A heartbreaking, debilitating condition that causes a child to lose precious skills once held, such as speech and purposeful movement. As a professional occupational therapist, my time with Abigail was a turbulent mix of emotions. Sometimes wonderful and exciting, often heartbreaking and frustrating. From a certain perspective, really a failure. She never learned to use those beautiful hands. Despite my best efforts. Despite the efforts of her dedicated loving parents and caregiver. Despite all the prayers and hopes, her hands continued to trace endless circles in the air. She never learned to feed herself, or use augmentative devices to communicate. She never learned to walk. She never spoke. As much as I hate to admit to it, there were times I wondered about the worth of her life. When faced with the great sorrow I saw on the faces of her parents as I would impart bad news about the failure of yet another therapeutic modality to improve Abigail’s skills. When the rollercoaster of emotion rocked us during her extended periods of illness or pain. When the myriad of medications she took didn’t work and Abby cried throughout the day. So I treated her as best I could. I read as much as I could, I joined a Rett Syndrome Association. I went to conferences. And I wondered.
Not many people called her Abby. It was a nickname I began using one day. I wasn’t ever sure anyone else liked it, but when I called her by her nickname she responded and smiled, and her eyes would twinkle as if we were two girlfriends sharing a secret code that no one else knew. When I spoke with others at her funeral, everyone had their own special stories of their time with Abigail. Extraordinary. Whether it was swimming together by her floating chair or a special nickname, Abigail, merely by her wonderful presence, endowed everyone she met with a sense of being special.
Despite her times of pain and suffering, there was no doubt to anyone that Abigail knew how to enjoy herself. When I worked with her on sitting and standing balance she would allow me her attention only if we watched together her favorite cartoon, “Pinky and the Brain”. So we did. In front of a TV set, she learned to sit by herself, and to stand with assistance, her balance got better, and we laughed together at all of the subtle jokes. I was never sure what Abigail was seeing or what evoked her laughter. Could she really understand the humor? It certainly seemed so. Was she enjoying the slapstick nature of the cartoon? Did she like the dance of light and color across the screen? We couldn’t talk, except in my imagination, so I never really knew for sure. But it didn’t really matter. We laughed together anyway, and shared our private jokes, and the world became a better place for both of us, for just a little while.
As her life went on, I saw the people around her change. Her parents, always strong and loving, became extremely tender, somehow softer and more open. Her main caretaker became a tower of strength and steadfastness. Her therapists became more dedicated, more sensitive. And even as I struggled with the big questions of what is the purpose of this one life, I recognized in the mirror the question reflected back at me.
When Abigail died the answers to my questions became clear. Her funeral was a standing room only event. Present were a mix of people from such divergent walks of life that it still has me awestruck. The ultimate in six degrees of separation. Everyone from judges, lawyers, doctors, teachers, babysitters and caretakers, to a star you’ve seen on the covers of magazines. They were all there. To pay their respects to her parents; to say a final goodbye to a little girl of such courage, worth and nobility that no one in that room would ever be the same for having known her. And as I gazed around I understood. Abigail’s life had deeply affected everyone there, and who knows how many countless others. Like a pebble tossed into a clear lake, ripples of love flowing ever outward from her center. A little girl, without speech, without movement, without the ability to communicate, had shown us all the meaning of a life well lived. In her silence and vulnerability she spoke volumes about how to make an impact, and leave the world a better place than you found it.
Abigail has helped me through my own 45-year-old existential crisis. In looking for a purpose and meaning to my own life, I ponder the impact she had on so many, and am reassured. Beyond what Robert Fulgrum reminded us about the basics we learned in kindergarten: to smile, to be polite, to share, to clean up after yourself ; Abigail’s lessons reach into the depth of your soul. She taught me about the worth of every life. She taught me that no one, including myself, has the ability to judge that worth. I am here for a reason. The impact I have on others may never be measured in my lifetime. I need only to trust that there is a purpose, to be myself, and to do the next right thing that presents itself in my path. We are all so interdependent with one another as to really be inseparable. Like different colored threads on a loom, together we form the pattern that is our world.
I planted a willow tree in my backyard some years ago. I can’t say that I planted it in Abigail’s memory, but it reminds me of her on a daily basis. Now strong and deeply rooted, it no longer requires the special supports we placed around it to protect it from strong winds. It moves with lightness and grace that I believe Abigail now enjoys; spirit free from the confines of her body. Drinking up all the earth has to offer, my willow tree is a thing of beauty. Abigail taught me that every life, no matter what it looks like, has a deep purpose and meaning. We are who we were meant to be. If we follow our heart, if we are truly and clearly ourselves, then our purpose will unfold as it should. This I believe.
1. Fulgrum, Robert. All I really need to know I learned in kindergarten. New York: Villard Books, 1988.