Perpetual Privacy

Silence is the sleep that nourishes wisdom.

~ Francis Bacon

When your daddy’s a poet, you often tag along to his readings. The venue of last weekend’s performance, the cramped cellar of a California foothill winery, may have appealed more to the grown-ups than to our boys. Nevertheless, because of Jukie’s strong bond with his dad, wherever Andy goes, Jukie goes. I bet Jukie has attended more poetry readings and spent more time in art galleries than any other kid in northern California.

Jukie loves a novel experience, so on this day, he happily hopped out of the car in sunny Placerville and eagerly entered the cool, tomb-like cellar room. Towering wooden crates filled with wine bottles lined the walls. Candlelight and a few antique lamps dimly lit the room. “How cool – it’s like a dungeon,” Truman announced. Jukie spied a plateful of cookies and swiped a few before anyone noticed. Grabbing a water-filled goblet by the stem and sitting down, he was ready for the entertainment.

When Andy stepped into the light and began reading his poetry, Jukie soon joined him, settling on a nearby empty stool. Always curious, and never self-conscious, Jukie was coaxed to action by the intimate setting (and by the unclaimed stool). Part of the fun of watching Jukie interact with the world involves watching him respond to the slightest notion, or the most subtle inspiration. Perched next to the racks of wine bottles (what could go wrong?), Jukie surveyed the room to see what Daddy saw.  

Sitting up front, and unable to intervene without making a scene, I relaxed and watched the show along with everyone else. Younger brother Truman shot me a worried look. “Daddy’s got this,” I whispered. Ever the unflappable pro, Andy continued his reading while handing Jukie his water glass, guiding him to choose a seat and to remain seated. He occasionally held Jukie’s hand or placed a calming palm on the top of our boy’s head. Andy did what he does while multitasking on stage: he read poems, made quips, and put the room at ease, all while expertly soothing and directing his boy. What a pair these two make – the distinguished poetry professor who teaches literature and writing, this poet laureate who crafts words into art, and his sweet, angelic boy who giggles unaccountably, and who cannot speak.

Robert Frost said that “poetry is when an emotion has found its thought and the thought has found words.” But what if there are no words? When I behold my mysterious, silent boy, I wonder about the poetry locked in his beautiful mind. I wonder how Jukie processes the world. Does he speak silently in his head, as all of us do? He understands our words, but does he think in words? Or does he think in pictures, as Temple Grandin says she does? Do our words translate into fleeting pictures in his unique and marvelous brain?

Sometimes at night as I tuck him into bed, I wonder if Jukie speaks in his dreams. Can his brain “unlock” while in a deep stage of sleep? I wish that Jukie’s dream state could let him speak freely, the way that he sometimes speaks to me in my dreams, when I’m lucky. He runs and laughs and goofs around just as wakeful Jukie does, and then the words flow from him, as if requiring no effort. Sometimes I notice myself hearing his impossible words and then wake unwillingly, keeping my eyes shut, clinging to the dreamy engagement for as long as I can. I want to remember everything he has said to me. 

Aching to hear his words, I envision his unconscious mind traveling down the hall during the wee hours of the night and meeting up with mine.  At times like this, I wish to jump back into the dream so that I could ask him questions. What makes you laugh so heartily and suddenly, and seemingly without cause? Why do you sometimes burst into such heart-shaking and unprovoked tears? How can I help you when that happens?

So much of your day is so peaceful and unhurried. What are you thinking about as you watch the trees sway in the summer breeze? What do you see in those clouds you study? What are your greatest desires? How I wish I could interrupt your perpetual privacy for a moment, and hear your spoken thoughts. My son, can you tell me that you love me? Just once? I promise that I will hold onto it forever.

All the World's a Stage

"Comedy is acting out optimism." ~ Robin Williams

Many of my readers will remember Truman's struggle with Selective Mutism, an anxiety disorder which rendered him virtually silent for three years. He could speak only to a couple of his close friends, his brother and sister, and his parents. He never said a word to his teachers. Not even his grandparents heard his voice. 

Last night in the school play, Truman played a Hercules beetle (hence the Beatles t-shirt - his idea), a staring role, with lines in every scene. Although he felt a bit nervous, you'd never have known: he nailed it!

My kids are drawn to the stage. It's in their blood, for their grandfather spent his life in the theater. Truman never got to meet Andy's dad - the man Geneva called GranDavey - but he displays his picture prominently on his bedside table. Truman's most prized possession is GranDavey's hat, the hat that he wore in the play, "so it'll be like he's with me," Truman said.  

Davey Marlin-Jones would have been thrilled to watch his grandson act with such passion, silliness, and confidence, just as I am thrilled to recognize a bit of Davey's exuberant spirit in Truman. Truman's not silent anymore.

Honor the Magic

“I have a son, who is my heart. A wonderful young man, daring and loving and strong and kind.” ~ Maya Angelou

I’m not overly superstitious. But I still make wishes at every opportunity: when I blow out birthday candles, when I toss a coin into a fountain, when a ladybug lands on me, when I blow a lost eyelash off my fingertip, and when I see the first star to appear in the night sky. Every kid knows you don’t reveal the wishes you’ve made. And while I have never revealed mine, everyone who knows me well could correctly guess who is the subject of my every wish.

My son Jukie was born with a rare genetic syndrome called Smith-Lemli-Opitz. In addition to other challenges, SLO caused Jukie’s autism. But of course Jukie is not his diagnosis. As a boy, my oldest son is filled with joy and curiosity. He’s funny and impish and affectionate. He’s handsome and quickly approaching my height. 14 years old, Jukie hasn’t spoken a word since he was three.

Jukie was diagnosed with SLO 13 years ago. In some ways, I am glad I didn’t know then what I know now. Learning to accept a child’s diagnosis is a process, a journey for both parent and child. I wouldn’t have been ready to face the reality, which took years to unfold, and I’m grateful for the protection that my early denial and uncertainty offered me. 

During those early years, I focused simply on Jukie and on all my love for him, the way we do with all children. I didn’t worry so much about him. I wasn’t too concerned with where we were “going” because I was busy melting each time his gaze met mine. Every time his outstretched arms reached for me, I happily scooped him up and plopped him on my hip. Jukie and I needed this bonding time together to prepare for tougher times ahead.

While we are not granted emotional shortcuts in life, I’ve learned a few lessons which I wish I could have shared with my frightened self of all those years ago. Although I may not have fully understood or even believed what my more experienced self would share, I’d like to imagine myself of today popping in for a visit to my struggling earlier self.  

To Jukie’s young mom, I’d have said: give yourself the gift of time. Take time to grieve the loss of the boy who might have been. While grief is acute early on, it gets better. Feel your feelings, even the scariest, most difficult ones. The only way to heal is to feel your way through. 

Be kind to yourself. Give yourself the same understanding you would offer a friend. Forgive yourself when you screw up. Rather than “Super Mommy,” you’re really just a mom, doing your best. Some days you’re going to fail. Allow yourself to hit the reset button and start over.

Dig deep to find the courage you need. It’s there. You will sometimes wonder if you can do it, if you can handle the challenges that come with raising this boy. His screaming stage that begins at age two will last a few years. Earplugs are a good idea. His post-surgery recovery period will be the most difficult of your life. Learn to reach out to everyone in your life for support in order to get through it. 

Trust yourself – you are a good mom. Trust Jukie – he’s a great kid. Trust your connection to one another, a connection born the first moment after his birth, when you looked into each other’s eyes. That connection is never lost.

Embrace Jukie for all of his differences. Celebrate everything that makes him unique! Catch and reflect his infectious laugh in the library! Join his spontaneity as he runs off in the opposite direction than you had intended. Sprint around trees and bookshelves to see the world through his eyes. Get used to exposing yourself; people will stare. Learn the liberation that comes from letting go of anything you’re hiding. Jukie will bring you out from the shadows. It’s better in the light.

Taking care of yourself is no luxury; it’s vital. Also, you deserve it. Build happiness and peace and pleasure into your days. Take walks in the arboretum, find beautiful trails to explore on weekends, prioritize time with friends, go dancing and to the theater and to the movies and to pub quiz every Monday night! Fill your home with music. Eat and sleep well. Get a massage and a pedicure because cute feet make you feel good.

Honor the magic. Somehow you traveled 4,000 miles from your home when you were just 20 years old and stumbled across the guy who would become your husband. You got the very best one. Lean on him. Lean on each other. Lean in together. You need one another. Let all of the challenges of life with Jukie bring you together. Invest in time together. Keep “dating” each other. Laugh together. Dance together. Cherish each other. And whenever he is within range, slap his ass.

You will never stop wishing for your boy’s words to return. Make peace with this chronic grief even as a small part of you holds out hope with each wish blown silently into birthday candle smoke.

Know that it gets better. It gets great. One day you will thrive. Your blog about your experiences raising Jukie will highlight the word “thriving” right in the title. Enlist your husband to collaborate on a book which people will read and relate to all over the world. You will challenge yourself to stand in front of large crowds and share your experiences. Jukie will touch lives with his pure spirit and gentle goodness. You will feel grateful for the lessons he teaches and the love he gives. You will embrace this life, our life, with your special boy. 

Geneva Stands Tall

Today is such a happy day that Geneva keeps laughing, I keep crying, and neither of us can stop smiling. We’ve been waiting for this day for four years. Today is the day Geneva was liberated from her back brace! Look at her joy.

From the day she received a diagnosis of scoliosis, Geneva made up her mind that there was no point in fighting it. She never cared what anyone else thought or how she looked. Instead she embraced (hee) her predicament, artfully covered her brace in stickers and wore it proudly, all while showing the rest of us how a badass, fierce, and brave girl faces adversity.     

With the exception of her occasional grumbles about the thick plastic brace overheating her during bike rides on 100°+ days or her lamenting her difficulty in sleeping comfortably, Geneva truly never complained. And she certainly had a right to. She wore that contraption for 23 hours a day for four years. I can’t imagine wearing it for an afternoon. To celebrate, we picked up some yummy treats, rolled down the windows and blasted the music on the drive across the Causeway. When I dropped her off at her high school, I watched her practically skip off to class, so eager to share her news with friends. I noticed how much smaller she looks without her brace and wondered if she will feel exposed or unprotected until she adjusts to this new self, as she has been walking around in “armor” for years. 

Today she stands tall, figuratively and literally, with a strong backbone and great posture. She feels like Melville’s Ishmael, who proclaimed, “I rejoice in my spine, as in the firm audacious staff of that flag which I fling half out to the world.” Today, we all rejoice with her.

Birthday Presence

Dear Jukie,

Fourteen years ago today you entered my world and changed everything. Your birth was so quick that no medical staff made it in time to help; we were on our own — just you and me in the water with your Daddy and Grammy Jo standing nearby, presumably feeling a mixture of excitement to meet you (finally!) and concern for your mommy who had no midwife to catch you. It turns out, you and I knew just what to do as I gripped the side of the tub and pushed with everything I had, and you peacefully slid into view. "He's out!" Daddy said, as I scooped you from the water and into my arms. A nurse appeared and covered us with towels. You and I stared into each other's eyes, oblivious to the sudden flurry of activity in our room. I remember silently talking to you. I was telling you, "you're here!...you look so much like your sister...you're mine." 

Excited for the surprise, I hadn't wanted to know your gender before you were born. But I knew you were a boy — so sure that I hadn't even thought to look. "My sweet boy," I said. Daddy and Grammy Jo laughed, "IS it a boy?" We all peeked beneath the water. Yep! A boy! Geneva had a baby brother. Daddy and I had a son. We called you Jackson, the only name we had discussed. 

Sometime during those first few months, Geneva began calling you "Jukie," and soon everyone adopted your new name. I didn't really know how to raise a boy, but I figured you'd show me the way. You were a cuddly baby who smiled early and often. We said you looked wise with your heavy-lidded Yoda eyes. You told us so much with those eyes.

On your first Thanksgiving, we received a phone call: "Smith-Lemli-Opitz Syndrome," the geneticist said. Shocked and scared, we held you tightly and wondered what this diagnosis meant for you. For us. Focus on the boy, I thought, not his new label. I knew this boy. I loved this boy. 

Every child develops at his or her own speed, but most follow the same general course. Still, parents have a hard time not comparing. For a few years of your early childhood, I felt desperate for you to keep up with your "typical" peers. But you had no peers. And you had your own timetable.

The night my grief reached its peak, I sat on the floor of my dark closet, letting out all the tears I thought would never stop. Daddy brought me a phone with a friend on the other end. She listened to me cry. She cried with me. I remembered that holding you always took away my fear. Focus on the love, I thought. Tiptoeing into your room that night, I stood over your crib and watched you sleep. I wondered where you would take us on our journey. Would you be okay? Would it all be okay? 

I couldn't have known the challenges that lay ahead. After one's child receives a frightening diagnosis, those early days (years) of denial and uncertainty serve to protect us, preventing us from overwhelming panic, allowing us the space and time necessary to cope with all that we will eventually take in. Today I have many close friends whose kids were also born with your rare syndrome. Sometimes I joke with them, "our heads would have exploded. If we had known." We laugh now. It feels good to laugh with someone who knows. When did our shared laughter surpass our shared tears? 

Mommies love to make their kids' birthdays special. Today I will spoil you with kisses. I will take you to your favorite nature playground and follow your lead. I will play your favorite music and listen to you sing along in your Jukie way. We will bake your favorite cake and try to believe it needs 14 candles. 

More than the struggles that I couldn't have anticipated we would face together, I could not have known the joy you would bring into our lives. You introduced me to a world lived in the present; you taught me that my presence is required when I'm with you. You show me how to live in the moments of connection and wonder. You're always taking in your surroundings. I follow your eyes, and together we notice the last of the leaves dropping from our backyard trees. You look up at the sky, smiling as if you're communicating with the clouds. I do the same. You take my hand to show me where you want to go. You have so much to teach us. I will follow your lead.

Happy birthday, sweet boy! I love you more than words can say.

Sweet Synchronicity

Today a young man approached me on the patio at Burgers & Brew and introduced himself as a “huge fan.” He said that he had read “Where’s Jukie?” and told me how much he enjoyed the book. I thanked him for sharing, and as we talked, I remembered where we had once met. “Hey! Didn’t you deliver a challah loaf in the shape of a turkey to my doorstep on Thanksgiving?” Yes, he had. When he told me that he had just arrived from Chicago (where he attends college), and that he had driven straight from the Sacramento airport to Burgers & Brew to eat lunch, I told him that I was getting one last B & B fix before heading to Chicago in the morning. We laughed at the synchronicity and swapped stories of our favorite Chicago haunts.

As I biked home, I realized that I never even got his name, but I knew that he had just made my day.

Thunderous Lights

I love fireworks. I love everything about them. I love the hot bike ride to the park and then the chilly ride home. I love the Davis community sharing in the experience with our collective “ooooh’s” and “ahhhh’s.” I love the fireworks that seem so slow to reach the sky, and that pause for just a moment longer than you expect before filling the sky with a gentle pop of cascading embers. My favorite are the ones that shoot toward the sky so fast you know their BOOM will quickly follow, an experience felt in your chest. I love snuggling together on blankets with my family and watching the kids’ faces in the reflected and thunderous lights. I love how Jukie enjoys the fireworks more each year, this year actually laughing after some of the ones he liked best.