Day One of Four: The Ginormous Van

What an incredible day. Truman and I made it to Wisconsin! Finally in Beloit, I am so happy to have my eyes on and my arms around my girl. Now to the challenge: cramming everything Geneva and her partner own into this ginormous van, which feels too big to drive, yet seems way too small to encompass all the stuff these kids have acquired over the last four years. I just want to get us HOME — and as soon as possible. 

In this uncertain new reality, we are all getting used to the idea that we cannot now come into contact with the people we love who are physically vulnerable. Today, I could not safely visit my three Illinois parents, all in their 80s. They live in Independent Living for Seniors, so there are no visitors allowed. How strange it felt to land at O’Hare Airport, and not drive straight to my mom’s home. And how could I possibly not visit a dear friend of 30 years who has been undergoing an intense treatment regime, a friend who needs every kind of support she can get? I parked outside her house, she bundled up and stepped outside, and then we stood about 10 feet apart and air hugged each other like crazy. What a strange and wistful feeling to have to keep your distance from a beloved friend you want only to throw your arms around.

And then finally, at Beloit College, we are all feeling so sad about saying goodbye to Geneva’s college experience prematurely. I had imagined that Geneva would be wearing a cap and gown the day we moved her out of her final campus residence. During what should be the end of spring break, most of the dorm rooms and apartments now sit empty of students but full of their belongings. Now everyone must leave. The virus struck our country so quickly; of course all the students had intended to return. Nothing is normal. Nothing feels right. 

Tomorrow we attempt our most ambitious day of driving, and straight into a snow storm. As a Californian since age 24, I wonder if I even remember how to drive in the snow. My first day of Driver’s Ed took place during a Chicago blizzard, so I suppose I can handle weather. I’m so grateful for my bestie Mary who flew up from Denver to provide driving relief, moral support, and lots of laughs. 

Meanwhile, we all must flatten the curve! As more and more of us “shelter in place,” I hope your adventures this week are domestic, warm, and at least a six-foot distance from those outsiders who do not share your DNA. I’m thinking about all of you, and hoping we all stay safe and well. 

Nebraska, here we come!

A Plea on Leap Day

Today on Leap Day, the rarest day of the year, we celebrate Rare Disease Day. On this day, we seek to advocate for and to raise awareness all around the world of the more than 7,000 rare diseases which typically receive little or no notice, as most people have never heard of them. 

My son Jukie was born with Smith-Lemli-Opitz Syndrome (SLO). SLO affects between 1 in 20,000 to 1 in 60,000 individuals and is primarily seen in people with European ancestry, and rarely in Asian and African populations. People with SLO cannot metabolize cholesterol properly, which affects every system in their bodies. All have some degree of Intellectual Disability, most have ASD (autism), and researchers have found that heart, lung, and kidney defects are common among those with the syndrome. Most kids with SLO struggle with motor development, feeding issues, and behavior challenges. And saddest of all, many of our children die as SLO has a high mortality rate. 

Children with disabilities are often defined by what they cannot do. My 19 year-old son Jukie, for instance, cannot speak. He can’t drive a car or take a date to a dance. He can’t go for a walk by himself or read a book. The list of “can’ts” seems endless; even all these years into his diagnosis, this list threatens to break my heart. But there’s another long list of things that Jukie can’t do on which I choose to focus.

As he is filled with love and innocence, Jukie cannot treat others unkindly. He greets everyone he encounters with the same sweetness. Jukie is everyone’s ally. He is incapable of bigotry, intolerance, or bullying. 

Jukie is unimpressed with titles or prestige. Whether he’s meeting one of California’s U.S. Senators or Mikey Mouse at Disneyland, Jukie sees all as his equal. When we toured the White House years ago, Jukie assumed that roped off rooms were merely jungle-gym invitations to sit on antique chairs. 

Jukie doesn’t experience sibling rivalry. Competition doesn’t exist for him, so he loves his brother and sister without the typical complexities which get in the way of sibling relationships. When he hears the voice of big sister Geneva (who lives thousands of miles away at college) on the phone, he waves and blows kisses. His smile tells me how much he loves her. When his little brother Truman gently redirects him many times a day, he accepts the correction even though Jukie is five years older and fifty pounds heavier. Jukie allows his little brother to play a big brother role and offers many regular, spontaneous hugs as evidence of his love and affection.

Jukie is filled with wonder, especially out in nature. He notices the tops of trees, morning dew on blades of grass, and just the force necessary to prune a neighbor’s fruit tree. He loves two-person bike rides (for he doesn’t pedal), greenbelt walks, and unknown vistas. Tie his running shoes tight, and he is ready for an adventure! Jukie has lessons to teach many of us about opening our eyes wide and filling the spacious “now” with his presence.

While we have learned many of those lessons from Jukie, every week on Facebook and via email I meet parents of children who have been newly diagnosed with Smith-Lemli-Opitz Syndrome. I am often the first person to disclose some of the difficult realities that I know well, sharing with parents truths that I wish I didn’t have to reveal. That’s why I donate my time as Director of Communications and Family Support for the Smith-Lemli-Opitz Foundation, so that I can connect the parents of new patients with other families spread all over the world and with the most knowledgeable specialists, and so I can raise money to fund research into this rare syndrome on Rare Disease Day.

If you are able, please consider helping people like Jukie, for the Foundation supports the thousands of individuals worldwide who have someone in their family as rare, as wonderful, and as deserving of care as is our beloved Jukie.

https://www.smithlemliopitz.org/donations/

Diagonal Adventures

All year long, we look forward to the second week in February. We get to spend it in San Francisco, which I think is the just about best place to spend a few days seeing sights. As we’re a family of writers, attending the San Francisco Writers Conference has become a family affair. Andy presents poetry summits by day, and with a quick change of clothes, dazzles as host of the jazz and poetry performances. This year, Truman participated in his first conference workshop for young writers. Some of you may know that Truman has completed a draft of his first novel (titled “The Impossible Luna Jade”), so he had some context for the lessons he was learning about writing. I enjoyed watching Truman excitedly exchanging texts about his experience with his big sister, off at college. Next year, she will attend as a conference volunteer and as a recent college graduate with a degree in creative writing. 

Because we take a similar trip every Valentine’s Day week, I can use this week to assess my kids’ (and dog’s) growth, physical as well as emotional. For instance, I should be used to Truman’s deep voice by now, but I’m still startled when I hear him intonate a phrase like “Let me check my phone to see what restaurants are nearby.” And I should be used to his height, but it still surprises me when I notice that my walking buddy now looks me in the eye!

While the Writers Conference is a big draw for us, any time we spent not thinking about, talking about, or dreaming about writing, we spent exploring the City on foot. Remembering tiny Margot’s fatigue on long walks this time last year, I took along her puppy sling, imagining that she would need to be carried when her wee Frenchie legs grew tired. But never did she slow or even pause during our typically 15,000-step journeys. Evidently, our daily four-mile walks had prepared her well for a series of grand city adventures. She seemed to delight in every moment. And why not? SF is crawling with dogs, especially Frenchies, and people who love Frenchies. Margot received significant love from dozens of strangers. I think she thinks she is famous!  

As we set out each day, we had a general sense of where we were headed, but by now we know the City well enough to navigate without the use of maps, which could spoil the fun. Besides, we feel that the best discoveries are the surprises we happen upon, such as the time we looked up to see what Jukie found so interesting in the sky: it was the parrots of Telegraph Hill. While lost in Golden Gate Park, we stumbled upon Shakespeare Garden, a popular site for weddings. And have you visited The Musée Mécanique? Who knew there was a museum filled with antique working arcade games down at the wharf? 

We could walk so much and so far because Margot was full of energy, because my knees lasted longer than expected, and because Jukie used all of his best behavior, even though we know grueling marches can be hard on him. I couldn’t blame him when he repeatedly stood stock still in front of me during the long climb up to Nob Hill. I encouraged him with, “There’s a park at the top!” He shook his head “no.” “I’m not pushing you up this hill,” I said. He signed, “yes.” We compromised by pausing every so often to eat bananas. And when we finally did reach the top, we delighted in hearing the bells of Grace Cathedral, which rang for many minutes, and which prompted Jukie to stand and watch the bell towers. People out walking their dogs stopped and sat on benches to listen. I don’t know if there’s a more magical sound than its forty-four bell carillon. 

Because we were stopped so often by Margot’s new fans, on our long walks Jukie had opportunities to rest and to share affectionate hugs, gentle head bonks, and kisses with Truman and me. Sleeping in (thank you, blackout curtains) and diagonally in a double bed next to his brother, Jukie must have realized that we were on vacation. I think the whole family is ready for another hilly adventure!

Pure Presence

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.

Yoda Grows Up: Jukie at 18

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.

Conserving our Love (for Jukie)

My husband Andy and I walked hand in hand into the lawyer’s office that first day expecting to discuss our son Jukie’s upcoming 18th birthday. The office was warm, but my hands felt cold. We had come to enlist a stranger’s help in taking away our son’s rights. And I felt kind of awful about that. 

Jukie was born with a rare genetic condition called Smith-Lemli-Optiz Syndrome, which caused autism and developmental delays, and which has required for him to benefit from constant supervision. He has no ability to speak or to care for himself. He cannot read or write. He can become aggressive when frustrated. He has been known to sample food from strangers’ plates in nice restaurants, and to climb out his bedroom window for late-night dances on our rooftop on a summer evening. He’s a handful in nearly every way. And his smile lights up a room and melts our hearts. 

When a child turns 18, s/he becomes an adult in the view of the law. And so in order to protect Jukie, Andy and I needed to obtain something called conservatorship, which entails a judge transferring all of Jukie’s adult rights to us. As we discovered the day after Jukie’s big sister Geneva turned 18, we could no longer schedule her doctor appointments or obtain her medical records without her consent. She had the right to make all decisions for herself. We hoped we had prepared our firstborn well for adulting. Always living between childhood and adulthood, our second-born Jukie would need his mom and dad to make his decisions of consequence going forward. 

The lawyer named Michael greeted us with a warm, welcoming handshake and invited us to join him at a conference table suited for about twenty people. He told us that he only practices special needs law with families like ours now, and that he had many questions for the two of us. How long had we been married? He smiled, commenting on our still sitting so close together after 26 years. We talked a bit about Jukie and his book-end siblings. And then Michael looked at me with sweet smile and asked me about my dreams for my life. I cleared my throat and asked, “MY life?” Yes, he wanted to hear about my hopes and my vision for my future, separate from Jukie. 

I found that I was trying hard not to cry. No one had ever asked me this question, and I realized that I hadn’t ever considered a life without caring every day for our boy Jukie. Michael began talking about the need for adults with disabilities to have their own life separate from their parents. Intellectually, I knew this was true. Jukie’s life growing up is a subject that Andy and I talk about, but one that we find nearly unbearable to think about. And here at the long table sat Michael the lawyer, a man I had only just met, asking me about my dreams. I realized I could no longer stop the tears that began streaming down my cheeks. Michael jumped up and left the room, searching for tissue. Andy removed his outer shirt and dried my tears with it. When Michael returned, he saw this scene, and commented, “that’s right Kate; you wipe your tears on Andy’s shirt like you’ve been doing for 26 years.” And I knew this Michael fellow was special. 

We started to talk about our dreams and the trips we’d like to take, a trip without the kids. Andy wants us to go to Nepal, I learned, while I thought we should pick a country in Europe that we hadn’t already visited. Similarly, Michael helped us imagine our dreams for Jukie, too, and this meant our framing the conservatorship differently from how we had before. Michael asked, “What good are rights for Jukie if he cannot access them?” Rather than taking away Jukie’s rights, we were beginning a plan to hold onto our parental rights. Nothing about life would change, Michael told us, except that we as Jukie’s parents would continue to make decisions for him just as we always had. This subtle shift in thinking helped me feel comforted by the process. 

Then we discussed all the various steps to come next. A court date would be set. Jukie would receive documents in the mail informing him of the conservatorship hearing, and he would have to be served (handed) these papers by someone outside our family. Then a court investigator would talk to Jukie’s extended family members, teachers, and doctors, and then come investigate us and our home. This process would take about a month, and we would have a few weeks to spare before Jukie’s 18th birthday. When the inspector came to our home, she inspected his bedroom and conducted a one-way interview with him. The report was thorough and included comments from telephone conversations she had had with our parents in Illinois and Washington, D.C.  

On the day of the court proceeding, we arrived early, and Jukie made himself comfortable on a bench outside the courtroom. In Jukie’s world, any chance encounter with an stranger is an opportunity for connection, and Jukie chose to connect with a woman whose purse interested him. After the first time he unzipped her purse, I apologized and she smiled. The second time he took something off of her purse, I sat between them. “We’re here for conservatorship,” I kind of wanted to tell her. She looked like a lawyer — maybe she’d be interested. Instead we sat in silence. I noticed that rather than the special book Truman had selected for Jukie to take to his big day at court, Jukie was holding a copy of Wine Spectator magazine. 

We entered the courtroom and were called to the lectern. Jukie spied a spinny, swively office chair and made himself right at home in it. “It’s Jukie’s courtroom,” Michael had told us. The judge examined the investigator’s report, asked us a few questions, including, “do you have plans for Christmas?” And just like that, conservatorship was approved. We stepped outside, and Michael photographed us high-fiving Jukie.

The courthouse photograph reveals the smiles on our faces and in our eyes, smiles that reflect the sort of calm confidence that comes from having accomplished so much with and for Jukie during his almost 18 years. While the challenges have been significant, we have embraced the ways these challenges have strengthened us as individuals and as a family, rather than letting us be defined by the inevitable setbacks and limitations that we have endured. Whether we eventually venture to someplace as mountainous as Nepal or as flat as Holland, we know now that all of us, even Jukie, will benefit from these important and necessary step towards greater independence. As our children grow older, as they exercise new rights by our sides or at increasing distances, we recognize that love means not only staring at each other, but also staring in the same direction, buffeted as we are by our familial love, and by all the requisite bravery we can muster.

World Autism Awareness Day

Today is World Autism Awareness Day. On this day, we shine a light on autism in the hope that those living with autism will feel less alone and know that people around the world celebrate, support, and welcome their difference, their uniqueness. 

Sometimes when a person becomes identified with a label, that label becomes all anyone sees. But as is true with members of any group, whether easily identifiable or not, we are all so much more than our labels. 

If you’re wondering what to do when you encounter an adult or a child like my 17-year-old son Jukie, I have some suggestions. 

Talk to them. Even though my son cannot use spoken language, he, like everyone, appreciates attention and respectful acknowledgement. 

Show kindness and compassion, as you would any other person. Be kind in your tone, in your curiosity, as well as in the content of your words.

Welcome them. Include them. If you’re throwing a party, invite them. If you observe a difficult moment, offer assistance or a kind word. 

Discuss their special interests with them. Have patience when they’re having a hard day. We all have hard days. 

Hire them. People with autism need and want meaningful and productive employment. All of us want something to do, a way to contribute.

Know that people with autism, like the rest of us, are individuals. As the expression goes: if you meet one person with autism, then you’ve met one person with autism. Don’t shy away from what it means to “meet” someone.

Get to know them. Sit with them; join them in silence. See what they see. Enjoy their company. 

Love them. The response to that love may be atypical, but the connection can nevertheless be authentic and consequential for you both.

What I Want You to Know about my Son

Each year on the last day of February, more than 80 countries worldwide celebrate Rare Disease Day (the date falling on the rarest date on the calendar every leap year). We seek to raise awareness of the more than 7,000 rare diseases with the hope of improving treatment and access to medical care for millions of people — 30 million people in the U.S. alone, more than half of them children. A disease is considered rare when it affects fewer than 200,000 people.

As most of you know, my boy Jukie was born with one of these rare diseases, unknown to most, called Smith-Lemli-Opitz Syndrome. People with SLO cannot metabolize cholesterol as well as the rest of us do. And because cholesterol is essential to every cell in our bodies, SLO tends to impact individuals profoundly, causing a wide range of varying symptoms. Although there are several clinical research trials located across the country, no cure exists for Smith-Lemli-Opitz Syndrome.

Today I would like to tell you about Jukie. As my son cannot speak for himself, I have always felt a responsibility to speak for him. Although he was born with a rare “disease,” he is so much more than his diagnostic label: Jukie is a person first. He has more in common with you and I than not. He tunes in to the moods of others around him, often mirroring the tension or happiness of others. His laughter is contagious. He finds comfort in sitting close to me, often gently placing his bare foot on top of my bare foot. His feet are baby soft. Sometimes he bites his baby toe in anger. He takes my hand in a crowd. He feels compelled to run down every hill he encounters. He sleeps in, like most teenagers. We have to drag him out of bed for school.

Nevertheless, Jukie loves school, racing for the bus in the morning. Like other 17-year-old boys, he never stops eating. After he has finished his plate of food, he eats the rest of mine. He communicates with pictures and sign language, understands what we say, and not wanting to miss anything, pays extra close attention to our whispers. Jukie's got a great sense of humor, although we only know what he's laughing at half the time. He has a mischievous streak — like the way he locks the front door every time I pop out for just a moment, pausing long enough to enjoy a good giggle before letting me back inside.

Unmet expectations upset Jukie. Sometimes he likes things to be arranged in a certain order, or to be free of extraneous distractions, such as crumbs on a tabletop. Because he struggles to communicate and cannot negotiate, he experiences occasional rages, and such rages result in the most difficult times for Jukie and for those of us who care for him. Like any of us, he has trouble calming himself when he is upset. Unlike most of us, Jukie cannot transform his fears and anxieties into words. Sometimes he can’t tell or show us how that which he needs the most is painfully out of reach.

Life with Jukie is filled with sweetness. No one expresses joy so purely and abundantly as he. Life with Jukie is filled with sorrow. We worry about his health and about the years ahead should he outlive us. Sometimes I look up to find him staring at me; we lock eyes, and he doesn't blink. When I kiss or tickle him, he signs “more.” I always give him more.

Jukie wants what everyone wants. He wants love and affection. He wants kindness and acceptance. He wants human touch, he wants time with family and the friends who know him best, and he wants recognition on every day, perhaps especially on #RareDiseaseDay.

Distant Hearts, Distant Heartache

And we wept that one so lovely should have a life so brief.

~ William Cullen Bryant

Sixteen years ago, when Jukie was diagnosed with Smith-Lemli-Opitz Syndrome just shy of his first birthday, I had never heard of SLO. Not until his first visit several years later to the National Institutes of Health 3,000 miles away did I have the opportunity to meet another child with Jukie’s syndrome. At our first meeting, no one had to tell me this child shared Jukie’s diagnosis, for he looked as though he were Jukie’s baby brother, with his tiny upturned nose, cute, short thumbs, and adorable second and third toes, joined together in the shape of a heart. And the smile — no child smiles brighter than a kid with SLO. I had only just met this toddler, yet he raised his arms for me to pick him up; I was in love. I wanted to meet every family out there raising a child with SLO. 

All these years later, I now know hundreds of families with children with SLO. We  message and talk daily. I have friends all over Europe, especially the UK and Ireland, Australia, New Zealand, South America, and South Africa. We function like a large, extended international family. When language presents a barrier, we communicate with Google Translate, helping each other to manage our complicated lives and offer support, encouragement, and humor. My friends’ children feel like nieces and nephews. We rejoice together in every victory, no matter how small. And we know that no victory is small in our world; our kids are fighters. Some kids spend years learning to walk with countless hours of occupational and physical therapy helping along the way. I know one fierce girl who took her first step at 8 years of age. Now she occasionally pushes people out of her way. It’s not unusual for a child with SLO to begin speaking in elementary school. I know a young man whose mother feared he might never talk, and now drops the occasional F bomb…just like any other 19-year-old. I feel great admiration for people with SLO, for their fighting spirits, their impish humor, and their loving natures. And their parents are pretty incredible too. We’re spread out all over the world, bonded through the same twist of genetic fate. 

Sadly, treatment for Smith-Lemli-Opitz Syndrome remains inadequate, and the mortality rate is high. Over the last couple weeks, we have mourned the loss of several children and a young adult with SLO. Tonight, I’m heartbroken to learn of the death of an angelic two-year-old boy who captured my heart when I spent a few days with him last summer. I’m filled with sadness for his family, feeling helpless and so far away. I wish I could put my arms around all of our grieving families. As I can’t travel to all of you, I want to let you know that the virtual arms of hundreds of parents envelop you and share your grief from all corners of the globe. You all inspire me every single day. I love you guys so much. 

Truman Walks his Path

"No one saves us but ourselves. No one can and no one may. 

We ourselves must walk the path."  

~ Gautama Buddha

Truman is a kid who sets his hopes high and feels passionately about everything he does. Before leaving for a week of outdoor education at Walker Creek, he ranked his expectations of the adventure as “up there with Star Wars: The Last Jedi, and Christmas.” In a letter he sent home, he described his cabin arrangements, bunking with his best buddies, and the photos he had taken. He ended it, “I want to tell you how happy I am here.” I knew he’d love it at Walker Creek, but it still felt great reading that. And at the end of the week, I could not wait to throw my arms around Truman and hear all of his stories. 

When I arrived early to pick him up, I had time to explore the bucolic setting. At first, I saw no children, just a family of deer watching the parents assemble, as parents must do every week, anxiously awaiting reunions with their happy campers. Then a group of kids slowly began gathering in the outdoor amphitheater. I scanned the crowd looking for Truman’s face, silently reminding myself for his sake not to make a showy scene of affection whenever I did spot him. A dad approached me and introduced himself as the father of a girl in Truman’s class. “We’re hearing a lot about Truman at home this year,” he told me with a smile. Ah, I’ll file away this girl’s name, and causally ask about her later, I thought. As we stood there watching a sea of excited parents and kids hugging and talking, we looked for our kids and swapped stories of the week with the “babies” of our families away. “We went out to eat a lot,” he confessed. So had we — every night! We laughed. And then I noticed that nearly every bench seat was filled, but still no Truman...until I turned my head and saw a familiar red jacket in the distance, running directly at me, waving and calling to me. And I forgot all my composure and ran toward my boy. With our arms still around each other, he said, “Mommy, I missed you SO MUCH — how’s Dilly?” Then he talked a mile a minute. “I got to try new and exciting foods I’ve never eaten before. Like tater tots!” How has he never had exciting tater tots, I wondered. He raved about the food. “The dining hall did smell really good, but our kitchen just has a special Mommy smell.” Even without tater tots, I thought.

Truman described his cabin group’s teamwork, and was particularly impressed with the group’s behavior toward a boy who is a wheelchair user. “I love how compassionate and understanding my friends are,” he said as he relayed tales of taking turns pushing his wheelchair and brainstorming ways to include everyone in every activity. Truman was struck by how such a wheelchair user must trust those who push him up and down steep hills. I agreed and thought about this for the rest of the day. As Truman took his seat for the closing ceremony, I noticed his rosy, sun-kissed cheeks. And had he actually grown an inch or two, or was it my imagination? Perhaps he was standing a bit taller.

The Walker Creek principal had explained in the opening ceremony that the week’s theme was “connection.” And now I noticed evidence of connection everywhere I looked. Kids had their arms around each other’s shoulders, talking excitedly to new friends that had met that week. Truman told me later that kids had bonded with each other and their cabin leaders, the naturalists who lead their outdoor adventures, and their teachers from home. The students stood and shared during the ceremony how they had been changed by their week. Many described a new-found connection to nature and to each other. They expressed gratitude for the week, for the food, and for help when they needed it. They talked about what they had learned, about nature, botany, and wild animals. One child said, “I learned I like poetry.” Thinking about his group’s day-long hike to the top of Walker Peak, Truman offered, “I learned I can accomplish anything I put my mind to.” Reflecting on his solo nature hike, he said, “I felt scared in a good way, and independent in a good way.”

And then the ceremony concluded with guitars and bongos and everyone singing the Bill Withers song Lean on Me. Glancing around at other adults nearby, I saw plenty of parents wiping tears, and was glad I wasn’t the only one. From my experience with Geneva’s Walker Creek adventure eight years earlier, I knew that this week changes lives. Geneva still calls her time at Walker Creek a highlight of her childhood. Kids learn to push themselves beyond limits, and out of comfort zones. Many hadn’t ever spent a day hiking or a night away from family until then. They discover strength and independence. And apparently tater tots.

I left the music off on our drive home, and my four boy passengers filled the space with tales of creeks and wet socks, deer and foxes, and girls peering into the boy cabin windows. They talked endlessly about the food, raving about its quality, “...and you could get seconds and thirds!” a boy yelled. My favorite cabin story: one (high school aged) cabin leader brought his ukulele, and softly played it each night at lights out as the kids fell asleep. The kids named him UkeDude. 

It’s a delight and a wonder to have my boy back home. The night of his return, he and I cooked a big celebratory meal and decorated our Christmas tree. Truman has thrown himself into his annual tradition of making every family member stacks of gifts, like our own family elf. Grateful for every cinematic tradition, we know that The Last Jedi is right around the corner!