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.
