Andy and Jukie have the most purely present relationship I have ever witnessed.
Anyone who has seen these two together has noticed their special connection. Early on, Andy earned the title of Jukie Whisperer, for he can intuit Jukie’s needs and manage his sometimes challenging behavior with gentle, firm direction and greater ease than anyone else. Jukie listens to his daddy. And Jukie adores his daddy. They communicate differently than most fathers and sons as Jukie uses a combination of sign language, PECS, and his iPad to speak for him. But mostly, they communicate through love, laughter, and play. There is a delightful surplus of spontaneous affection in our home.
I often hear reports from friends and acquaintances of Jukie/Andy sightings around town. “I saw them riding down third street on their cargo bike,” they’ll say. “I saw them sharing kettle corn at the Farmers’ Market last Saturday.” “They were at an art gallery for a poetry reading, and Jukie was so well behaved.” People often compliment Andy’s parenting. He’s patient and sweet with our boy. He takes Jukie on adventures all over Northern California, and they are seen in museums, performance venues, and college lecture halls: places one might not think to take a kid with Jukie’s particular differences. What people don’t see is that Jukie is also teaching Daddy. Yes, Daddy works his parenting magic, but Jukie is the master teacher.
While Andy regularly practices Zen meditation, Jukie seems to live with Zen in his heart. Quietly attentive, Jukie’s natural state is peaceful and relaxed. He lives in the present with his attention sometimes focused on the beauty of nature: the wind in the trees, the clouds in the sky, and the French bulldog puppy in his lap. He studies pictures that he loves, pointing to show us what he notices. Sometimes out of context, loudly, and often, Jukie laughs, reminding us not to take life so seriously. He touches our faces when he wonders what we’re thinking. And he climbs in bed at the end of the day, and sometimes before the day has ended; Jukie always knows when he’s had enough.
If I’m being real, I need to add that it’s not always easy being Jukie’s mama. I worry all the time about issues that parents of typical kids don’t imagine. Sometimes his frustration overwhelms him, and he erupts. I fear that he could have an illness we will miss because he cannot tell us he’s in pain. I wonder if he yearns to communicate something more complex than what we understand. And I worry about his future life without the Jukie Whisperer and me.
When these thoughts threaten to overtake me, I think of Jukie’s teaching, and see the boy before me. I laugh with him. As we spin with our eyes closed, walk the greenbelts of Davis, take in the patterns of clouds after a storm, or taste each section of an orange as if it were our first, we are reminded of Jukie’s foremost lesson: We have today – be present.
For my special son on his 18th birthday.
Today, sweet Jukie, you turn 18 years old. It’s almost as if I thought this day would never arrive, for when I held you and rocked you in my arms all those uncertain days and long nights so many years ago, the road ahead felt so daunting that I couldn’t imagine you ever growing up.
Soon after your birth, people commented on your unusual look. They told me you looked wise, like Yoda from Star Wars. You were my silent Buddha, taking everything in, withholding your smiles, like you were rationing them for special occasions. You spent your time looking narrowly and deeply into my eyes. What do you know, I wondered.
You have always kept your own timetable — you grew and developed on your own schedule. You cautiously waited 17 months to walk. Three days after your first step, you took off running. Running was your favorite, I used to say. It’s still your favorite.
The countless hours we spent at physical, occupational, and speech therapy each week throughout your early childhood felt overwhelming, but they also made us hopeful. So many people loved and nurtured you along the way. When I felt anxious about your development, I borrowed from the hope and enthusiasm expressed by your therapists and teachers. I depended upon them as your cheerleading squad. Maybe I needed them even more than you did; they helped get us through those tough years. Even as you lost your language, you found your way.
Your early elementary school teacher became my friend. She and I communicated in notebooks and then via email, filling each other in on your home and school life so that you’d have consistency going back and forth between these realms of love. With our letters, we took turns strategizing for you and speaking for you. Giving me her strength and her encouragement, your teacher told me to publish my stories. When I became a writer, you were my first subject.
Our last few years haven’t been easy. Adolescence rocked your equilibrium, caused you great frustration, and triggered your truculent impulses. Still you look into my eyes, and still you can’t tell me why you’re upset. We do our best to communicate with each other, often failing to understand. But we never stop trying.
And now you are my teacher. Every day in your Zen way, you show me how to slow down, and how to focus mindfully on the small things in our lives. You draw my attention to a single leaf falling from the towering sycamore tree in our backyard, the sound of the wind chimes blowing in the breeze, a tiny droplet of condensation in the corner of a copper table, or the scent of curry coming from a neighbor’s home. I’m grateful to see the world the way you see it and through your eyes. That is my gift on your birthday.
My mercurial little adult, my beloved, take my hand. We will continue together.
