by Terry Trueman
When I read Stuck in Neutral, Trueman's first book, ten years ago, I remember being impressed by the story of Shawn, moved by Shawn’s character, his realistic and cynical voice and his internal struggles, and sympathetic to Shawn’s family. What must it be like to be trapped in a body which will not obey? I pondered this for a few weeks then went on with my life. I had no idea that, fast-forward ten years, I would be one of those family members caring for a severely disabled young man, and that Shawn’s story would at least in part, become my own.
Above right is a photograph of my stepson, Thomas. Thomas is 21 years old, weighs 64 pounds, is tube fed, nonverbal, wears diapers, has cerebral palsy, seizure disorder and other various developmental disabilities. Unlike Shawn though, Thomas does have some limited motor control. I married Tommy’s dad, Terry, several years ago, after thinking long and hard about whether I was ready to jump ship from my single, no-responsibilities life into a family situation. I knew that Thomas was in his father’s sole custody, and was to be our full-time responsibility. Top that off with the fact that Thomas’s dad travels for sometimes days at a time and at a moment’s notice, and you can see how my lifestyle might change. And oh, has it changed! Over these past three years I have cared for Thomas: fed him, changed his diapers at three A.M., bathed him, washed his bedding, cleaned up his accidents, wiped his nose and mopped up pools of drool, lifted him in and out of wheelchairs, cars, his bed…you get the picture. I have become his advocate, learning how to prepare for doctor’s appointments to make them rapid and efficient, how to file an appeal to a health insurance denial, what types of paperwork needs to be done in Thomas’s support on a yearly basis, what a “Trust” is, how to hold Thomas’s wondering hands and write a check at the same time at the grocery store, how to manage my time better so that I can work full time and still be there to get Thomas ready for school, what “Home Health Care” means and how to keep my tears under wraps when Tommy’s nutritional formula is delivered late. It’s been challenging, but I’ve learned much about myself and others in the process.
What I love about this sequel is what the reader learns about humanity through Shawn’s jaded thoughts and Debi’s tender, humorous voice. I have never heard my dear Thomas speak, but in these pages Trueman has gifted Thomas with a voice, and it shouts from every page. Thomas is very smart—I see it in the way he looks at me, in the way he laughs when his father and I kiss, in the way he reaches for me when I am sad, in the way he flirts with his sister’s friends, and in the way he becomes fixed on television shows and music. Thomas is magnetic—people recognize him everywhere, and he has a hug and a smile for everyone who gets near enough to touch him. So, in Shawn’s words, “what is God’s big plan” for Thomas? I have often wondered this myself as I bathe him or feed him. How will people grieve Thomas when he is gone? How will they remember him? What will he leave behind when he cannot work, get married, have kids, or even talk? In the words of Shawn’s mother from the novel, we live “in a society…that gives a material value to everything and everybody,” but that’s not really what it’s all about is it? We need to look past our bodies and see what Shawn calls the “souls and spirits” that live on forever. Unless we learn to “pay attention to [our] world” and to one another, we may never really know the wonderful people like Thomas and Shawn who have a little something to give—or people like Debi, who give us the gift of knowing ourselves.
Thank you once again, Terry Trueman, for giving kids like Shawn, Debi (and Thomas) a voice.