Thursday, July 24, 2014

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.

Saturday, July 5, 2014

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.

Thursday, November 7, 2013

Over the Moon for my Boon

Today my beautiful Geneva turns sweet 16. This photo, taken not long after she had donated 12 inches of her hair to the charity Locks of Love at age eight, has always been a favorite of mine. I love her big, expressive, innocent eyes. I love her chubby little fingers marked with paint. And I love the bracelet she holds which reads "Peace." While each of the friends at her 8th birthday party had spelled out her own name on a bracelet, Geneva chose to represent a concept that was important to her. One year she even dressed up as “world peace” for Halloween.

We try on costumes to try on the roles we may hope to adopt as adults. When other girls in nursery school dressed as princesses for Halloween, Geneva chose to dress as her favorite bird: a painted bunting. When seemingly every other kid in our hometown enrolled in soccer, Geneva chose tae kwon do. She travels her own unique and authentic path.

For my own path, I have always known that I wanted to be a mommy. As far back as I can remember, I imagined my grown-up self with a baby on my hip and another child’s hand in mine. And truth be told, I really wanted a daughter. It’s not that I didn’t want sons. I just didn’t know what to expect or to do with boys. What I had observed of boy-play usually looked foreign, aggressive, or downright scary. (It turns out that I had no idea how great boys are -- I will save that for a future essay.) But girls I knew. And I knew that I wanted one.

My initial journey to motherhood was filled with painful twists and bumps: I lost my first two babies to miscarriage. Every woman who has experienced miscarriage knows that particular sorrow and grief at the loss of her baby, and the fear for future pregnancies. As always, Andy was my rock throughout those tough years. He and I turn toward each other in times of crisis and stress; facing challenges, we draw even closer together. And we shared the same dream to create a family. So, we were over the moon when I conceived Geneva and began to watch my belly grow, feeling her sweet little hungry bird kicks.

Certainly no baby could ever have been more wanted. I experienced all the typical discomforts with that pregnancy, but I barely minded. Not surprisingly, my labor and delivery were long and hard. But with my mom and Andy at my side encouraging me through the (four!) hours of pushing, I did it! In fact, I reached down and grabbed her under her arms and pulled her out myself. Her strong lungs wailed as I placed her on my chest, while Andy and my mom stood crying. And I cried too as I examined her sweet face. Not until I held her in my arms had I truly believed she was real. We named her Geneva Moon. (And “Boonie” soon became her nickname.)

Because all kids are natural comedians, I figured Geneva would be funny, but I didn’t know how her humor would develop so early and surprise me daily. I loved her wit. She had a habit of narrating observations in such silly ways. Once when she was three, out our kitchen window we observed a woman in a wheelchair rolling backwards down our quiet street in Davis. Geneva remarked, “Now that’s something you don’t see every day!” Around that same time she crawled in bed in the wee hours of the morning snuggling between her daddy and me. After about two minutes she shot up and announced, “what an eerie silence!”

I love that Geneva and I share the same sense of humor. The other day she pointed out the way she and I laugh together during movies when the rest of the theatre remains silent: “sometimes we’re the only ones laughing, and then that makes us laugh harder, and then the other’s laugh just makes us laugh longer.” I am grateful for our contagious hilarity. As much as I wanted a daughter, I could not have anticipated how much fun we have together.

I feel privileged to have a front row seat watching Geneva grow from that spirited and cranky newborn into a beautiful and poised young woman. I most admire her strength when I see her stand up for her core beliefs. For example, anyone who speaks disparagingly of a person with disabilities in Geneva’s presence will receive a corrective earful. 

As mature and as self-assured as Geneva has become, I love how she still appreciates being taken care of and surprised as a little girl. Just last night, the night before she was to turn 16, she asked me to sneak into her room while she was sleeping to leave one of her birthday presents beside her pillow.

While Geneva seems to imagine I work for the Tooth Fairy, to me, my much-beloved girl will always be my little painted bunting. Happy birthday, Boonie!

Monday, October 7, 2013

Love Unspoken

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.