Little One Laugh Little One Run

“Once upon a time” always means a beautiful tale is about to unfold. A treasure of words combines to weave a gift of a story, an adventure, a journey, a path to places perhaps we never expect to travel. Once upon a time there is a little girl who some days is Kim, some days is Kimberly, and some days, when she is very dressed up in her new velvet party dress and shiny patent leather shoes, is Kimberly Anne. She never tells us in advance which she is going to be until she decides herself. It is a surprise each morning when she makes her announcement: “Today I am Kimberly!” I love that! So does she. I always try to call her by the name she has chosen, but sometimes I call her “Little One”. I don’t know why, I just do. It has stuck.

This is just one of the thousands of special things that make this very beautiful three-year-young oldest child and only daughter, a very, very special once upon a time story, a story that I will treasure forever. She is a gift. This is her story as told through the words and heart of her mother, with all the flaws of an inexperienced writer. In part, it is the narrative of the first thirty-three days that led up to Kim’s diagnosis and prognosis six weeks after her third birthday. At the beginning, our doctor asked me to keep a record of Kim’s symptoms because it is “so hard to remember things with three little ones.” The record became notes, sometimes pages, and then a journal that after her diagnosis became my diary of Kim’s life. I wrote in it as I watched over my sleeping child. I wrote instead of crying. One cannot cry twenty-four hours a day when there is so much to do. My diary became my comfort, my secret best friend in whom I could confide my greatest hopes, my deepest fears, my love, my hate, my soul. My diary was then to become this memoir, written to convey the radiance, the beauty, the love Kim created and the joy she brings into our family’s life. As odd as it may sound, by putting pen to paper during nine months of her life, I am able to keep Kim and this time, forever. I did not know that then. For years, I did not, could not, read what I had written, not even once.

I can read it now because somehow or other, I have healed. Kim is part of my life and the lives of my husband and sons. I do not know how or when the healing began, nor did I know then that it would ever happen. As I sat by Kim’s bedside, I did not look ahead or think ahead or even realize there would be a future. My world consisted only of the present—each day, each night. The present consumed my whole being.

To remain humane requires us to use courage and wisdom in equal parts. I offer this memoir to all of us who, at some point in our lives, for one reason or another, question the meaning of life, love, family, friendship, hope, and despair. Truth is often not tidy, nor accessible. Truth can be heartbreaking when it gives answers that a person does not want to hear. Truth can shatter assumptions and can destroy beliefs. It can prompt decisions and actions many do not find acceptable. Yet throughout all, though the heart may be breaking, we must not forget laughter. Children need to laugh and surely if they can, we must. Why? Because we have no choice if we want our family to survive. 

I offer this memoir to doctors and parents dealing with grievously ill children. For doctors and medical students, I hope it will help them be supportive of parents who do truly understand the full truth and all the consequences of experimental procedures and the importance of the quality of life, as well as of parents who may decide not to subject their children to these procedures on the slim hope of staving off death for a few weeks or months. Doctors need to be human enough to listen to these parents and be aware that should these parents make this decision, they are still loving parents even though they did not “do everything” to keep their children alive to the last possible moment. One cannot be a doctor if one loses the ability to love and to cry, because sometimes that is the most medically-ethical thing to do.

I offer this memoir also to those parents who deny highly-experimental treatment, who pick their child up and go home from the hospital to surround her with love, happiness, and beauty—rather than needles, drugs, and indignities. I hope this book will give them support and encouragement. For those parents will not be told that they are right, they are humane, and they are guiltless. They will face almost insurmountable hostility. Parents stand virtually alone within the antiseptic world of medicine, challenged by a belief that medical advances are more important than human love. The stakes are devastating. Experimental treatment in the medical world plays with the odds of time. The resulting unpredictable side effects can be horrendous. If you successfully probe, mercilessly question, demand answers even if you do not want to hear them, you can discover the terrain of connection among medical experimentation, pharmaceutical research, advertising duplicity, and, sadly, the profit motive. ‘Touch me, courage, not softly’ becomes the high bar they cling to as they come to appreciate that sometimes the future is not always more important than the present, especially when on a perilous journey with their child, moving only in the staccato space of one day at a time.

 As parents we searched for answers to questions that society still seeks to avoid because they have been characterized as ‘the slippery slope’. But we were already there. To not answer these questions would be to allow decisions to be made by those who do not see Kim’s face because they see only the faces of thousands of Kims. This is our battle for our daughter’s life. She is not a statistic on a national medical chart. She is our Kim. Each decision rests solely on how decisions will affect her; her day, her week, her month, her life. That is what being a parent means. Kim’s face becomes unforgettable because you grow to know her and love her, as she would love you. Kim becomes the child of every parent as only a parent can understand. The agony of the decision to deny treatment becomes a trial that can be sustained only by deep conviction and strength. For it is these parents who suddenly and tragically must learn a different meaning of life for a child they love more than themselves.