In the back of my closet, on the top shelf, lies a box that I never open. I cannot. The ten-year-old videotapes in that box document the typical sorts of birthday parties, vacations, and holidays that most every family records: all manner of sweet times. I cannot bring myself to watch these particular videos for they happen to highlight the great heartbreak of my life: my son Jukie’s loss of language.
Like many kids, Jukie’s first word was “Mama.” “Dada” quickly followed, as did his sister’s nickname, “Oonie” (for “Boonie”), and his own name, “Ookie.” Only those closest to Jukie grew to recognize his idiosyncratic pronunciation -- one of my favorites, “Dee Dah Dohd” referred to his favorite Sesame Street character (Big Bird). Jukie delighted in sharing his knowledge of the names of favorite people and toys. Each afternoon as I plopped him in his car seat, he would chant, “Oonie an’ Ellen, Oonie an’ Ellen…!” because he knew that we were about to drive the carpool with his sister and her best friend Helen. His acquisition of language developed so slowly that we remarked on each word, and learned the Jukie version of each additional word along with him. I still remember the day he eagerly announced “loon! loon!” as we drove past a bouquet of balloons. And I clearly remember excitedly thinking that his language was finally starting to take off!
Looking back, I realize that that “loon” moment actually marked the peak of Jukie’s linguistic bell curve. Just as Jukie learned language slowly, equally slowly did he lose his words. At first, he stopped labeling objects around the house. Gradually, he grew more quiet and serious. I imagined that he was becoming more thoughtful. Then I noticed a cessation in his learning new words. Then I noticed a steady decline in his use of familiar words, the words that had brought us all such joy when they first appeared. Each word dropped off one by one. One day I heard his last “Ookie” then his last “Dada.” The last word I ever heard him say was his first: “Mama.”
In one way, I take comfort in his holding onto “Mama” until the end. In another way, I find contemplating his last “Mama” almost too much to bear.
When faced with that sense of sorrow and loss, I take some comfort from all of the ways that Jukie and I have connected since the day I learned of my pregnancy. I remember my delight in waiting for the surprise of his gender until his birth, yet knowing with certainty all along that I was carrying a boy. (“Now you have one of each,” his grandfather told us delightedly.) I think about the magic of his underwater tub birth, of gently scooping him from the water myself and placing him on my chest. I remember the sweet intensity of his newborn gaze directly into my eyes; we knew each other instantly. I marvel at his ability to nurse immediately (most kids with Smith-Lemli-Opitz Syndrome never breastfeed) and feel gratitude that he and I shared that connection for a full year. Our relationship has never lacked for connection.
As Jukie grows, so does the complexity of his thoughts and actions. He communicates with us through a system of PECS and sign language. But mostly we have developed our own form of communication which involves intuiting Jukie’s needs and desires. As Jukie's experience of the world appears more visceral and emotional, rather than logical or ego-based, he perpetually clues in to the emotions and energy of those closest to him. Much of our communication takes place in this exchange of energy and intuition; simply being together in silence, we convey our messages. This instinctive nature of our relationship allows for and requires constant, reciprocal connection. It depends upon gazes, caresses, hugs, and fleeting smiles. This afternoon, I overheard eight-year-old Truman's attempt at explaining our communication with Jukie while talking with a new friend, "It's like Jukie's Chewbacca, and my sister's Han Solo." The Star Wars copilot analogy was perfect: We understand Jukie, and he understands us.
Parents know that children are our best teachers. I learn more about life and love from my kids than everyone else I know put together. But Jukie is my master teacher, my Yoda, if you will. As Jukie’s primary goal in life is to seek and express his affection and joy with people he loves, he teaches me the value of that connection with others. Seems so simple, right? Of course we’re here to love and connect – what’s the big deal? Yet, ego and feelings complicate relationships. It’s easy to get mad at people we love. In fact, it’s super easy to get mad at Jukie! My boy’s mischievous antics can make a mama crazy. (Thank goodness his fascination with the sound of breaking glass ended years ago.) But like any kid, Jukie dislikes parental disapproval and will meet our looks of displeasure with offerings of apologetic kisses. When I feel annoyed with the behavior of someone I love, I try to remember that our ultimate desire of any close relationship lies in that same connection that Jukie enacts with his wordless gestures. We should all live a bit more the way Jukie lives. He gives affection easily, forgives quickly, and loves unconditionally.
If it weren’t for the memory of others to corroborate my own, I’d almost wonder if I dreamt those years with Jukie, for Talking Jukie feels like a dream. I’d give everything I own to hear him say, “mama” just one more time.
But as I cannot, I have come to depend upon the loving physicality of our closeness. Jukie says “Mama” to me with his eyes.