Monday, April 13, 2015

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. 

Thursday, January 29, 2015

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.





Sunday, January 4, 2015

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.


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.