Friday, January 4, 2019

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.

Friday, December 14, 2018

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.



Monday, April 2, 2018

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.

Wednesday, February 28, 2018

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.

Tuesday, February 6, 2018

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. 

Sunday, December 3, 2017

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!


Tuesday, November 28, 2017

A Week at Walker Creek



Today I dropped Truman off for a week-long outdoor education adventure 80 miles from home. One would think that by my third kid, I’d approach this task like a pro, give him a big kiss, and send him on his way. That’s mostly what happened...except that I gave him about 10 kisses and one extra-long squeeze, trying not to make a scene. I hope that I projected an outward sense of calm, masking my inner twitchiness that comes with the title of “mom.”

“Walker Creek,” as this week is affectionately known around town, has become legendary on Davis school playgrounds. Students from just about every sixth-grade class in town spend a week there. Nearly every kid returns feeling triumphant and independent, sharing stories of solo hikes, astronomy lessons, skits, and campfires. They rave about the food and discuss life in the cabins with 11 other classmates and a few brave high schoolers, returning to relive their experiences of Walker Creek, this time as cabin leaders. The kids look forward to the day-long hike to Walker Peak, which ends with views of Tomales Bay, Mount St Helena, and the Pacific Ocean. And on the final night at Walker Creek, everyone gets down at Barnyard Boogie, the highly anticipated barn dance celebrating the end of an epic week.

Parents who drove in the caravan transporting kids today were invited to stay for the welcome ceremony and for the first hike. Our group took Turkey Vulture Canyon Trail. Soon after we began, and as if on cue, a giant turkey vulture landed on top of a nearby tree. Our hike-leading naturalist, Paws, took the opportunity to teach the kids the “Quiet Coyote” hand sign, signaling all to silence themselves and focus their attention, in this case, on the huge buzzard after whom our trail was named.



During the hike I watched the wildlife, but also watched my boy. Apart from sleepovers with buddies and grandparents, Truman has never spent a night away from home without one or both of his parents, so this is a big step for him. We all have eagerly anticipated this long experiment in independence. In typical Truman fashion, our boy began packing and preparing weeks ago. As I told him, “This is a week you’ll always remember – you’ll have the time of your life.” To record his adventures, Truman brought a new journal and a disposable camera. I demonstrated how cameras worked before digital photography: winding film and charging the flash for those evening cabin photos. While I talked our ambitious reader down to bringing just five novels to read this week, he obviously plans to mix some writing in with his reading. His stamps and envelopes indicated his intention to write home “because I know how much you’re going to miss me.” I’m sure the missing goes both directions this week.



Last night, just before loading Truman’s suitcase into the car, and as I hid a note for him to find later, I noticed that he had packed a small, framed family photo, placing it on top of his clothes. I smiled as I imagined his face reading my message:

Dear Coolie,

I couldn’t resist sneaking a letter into your suitcase for you to discover after your arrival at Walker Creek (you’ll receive a couple more from Daddy and me at mail time). As I write, you are downstairs busily checking that you have everything ready for tomorrow. And I’m upstairs listening to music that you and I both love and thinking about how lucky I am to be your mom.

I’ll miss hearing your saxophone melodies fill our home this week. I’ll miss your coming to my bedside each morning to check if I’m awake. I’ll miss playing badminton with you after school. And I’ll miss your laugh and your hugs. But for every moment that I miss, I’ll feel thrilled thinking about you having a grand adventure in such a gorgeous area of California. I can’t wait to see you at the end of the week and hear all of your stories. I hope you know how proud I am of you. Have a GREAT time, my sweet boy! I couldn’t possibly love you more.

Love, Mommy



I do miss him already. Whereas my car on the way there had been filled with the noise of four excited boys, my drive home was peaceful and quiet. I took in the beauty of the countryside with its rolling hills, its canyons, and its valleys. I thought about how it seems just a moment ago that I dropped Truman off for his first day of nursery school. How quickly it all passes! I wondered if he’ll be warm enough during night hikes or if he’ll have trouble falling asleep. I wondered what nature name he might choose for himself this week, something that might complement his sister and brother’s names, for they have Moon and Forest on their birth certificates. But mostly I smiled, thinking about the exciting adventure that awaits my boy.




Friday, November 17, 2017

Words We Live by


While touring my son Truman’s classroom the other day, I came across this self-portrait he had created entirely out of words which describe the way he sees himself or which hold significance for him. 

Upon close inspection, I notice that the words the saxophone and family outline his frontal lobe. He uses artistic and bookish to form his left ear. I see Beloit College in the right ear and am reminded how much he wants to hear from his big sister. He includes Wisconsin, where his sister now lives, London, where his dad and I met, and Muir Woods, the beautiful old growth forest, a sacred place where his dad proposed to me four years later. 

Disneyland, Universal Studios, and amusement parks receive honorable mention. The boy spends a lot of time thinking about happy family adventures and planning our next trips. 

At first, I can’t make out one word until I recognize that he has misspelled Morocco. He was thinking of Casablanca, a film we saw as a family in the theater last summer. I had wondered if it would hold his interest. He loved it! 

He uses books, reading, and poetry, all of which make me proud. Roald Dahl appears as a favorite author, each of his novels read and reread.

His inclusion of brave and True makes me tear up. His use of history, hilarious, and understanding make me smile. Creative, inventive, and music warm my heart.


Interestingly, he places communicative on the left side of his head, over his left brain, the side that controls language, a fact he has not yet learned. I think about the importance of that word, as communication dominates much of our family’s focus and energy; his brother has no use of verbal language. And yet words are big in our home as we express ourselves creatively through writing, public speaking, and performing. I often feel struck by the special poignancy of two writers creating two more writers and one wordless son, and the ways in which the silent boy teaches us. It’s no wonder that compassionate appears in Truman’s reflection. Perhaps this is my favorite word of all.

Tuesday, March 7, 2017

Strength in Compassion


Today when I picked up Truman from school, his 5th grade teacher met me at the door with an exacerbated expression and a long exhale. "Uh oh," I said, replacing my typical greeting — I wasn't sure I wanted to hear what came next.

I should back up. This week Truman takes his turn as the "Fabulous Face" in the classroom, which means he presents a visual display of his biography and personality in a large poster collage. On Friday, he will bring to school important artifacts which represent that which makes him him, and then he will stand before the class with a magic wand, pointing out the significance of each photo and item, after which the other students will interview him. Watching Truman create this project, I was struck by the bravery kids muster and the vulnerability they share when revealing cherished parts of themselves in such assignments. We adults rarely open ourselves up in this way, standing before a room full of peers, saying, here is my face, here is everything important to me: this is who I am. Kids are brave.

Anyone who knows Truman knows that he put a lot of thought and planning into selecting his photographs. Among others, he included shots of himself playing the saxophone, staring up at Mt. Rushmore, and jumping on the trampoline. One picture showed all of us traveling on our Massive Road Trip last summer, and another represented the wide smile and beautiful face of his brother Jukie.


This is where Truman’s teacher returns to the story. She described an incident where a student walked up to Truman's poster, pointed to the photo of Jukie, and made some disparaging comments, the details of which I won’t repeat here. To say that the teacher was angry would be an understatement; she was livid. In the moment that she explained to me what had happened, I felt more a familiar sadness than anger. Truman and I locked our sad eyes with one another, and I knew we were both dying to get off the school grounds so we could debrief.

Because of Jukie’s differences – his unusual behavior and facial features that are typical for children with Smith-Lemli-Opitz Syndrome – my family has occasionally encountered this kind of bullying and cruelty over the years, although rarely in our progressive and inclusive college town. For the most part, schoolchildren in Davis show love and respect toward kids who seem different. Seen often on adventures with members of his family, Jukie is known and loved here. So every time something like this happens, we feel betrayed and a bit stunned.

As we walked away from his classroom, Truman described how he handled the situation, and as his mom, I felt proud. Truman told me that he was in line a couple children behind the boy who had cruelly disparaged his brother, and that he had heard the whole thing. He said to me, "Well, I WANTED to punch him in the face...and I nearly did!" "What stopped you?" I asked. "I knew I had better options." He opted to talk to his teachers, finding support from adults who, in their measured ways, focused on the restorative justice that is made possible by an apology (in this case, both written and presented verbally).

Like any 11-year-old negotiating the social structures of the elementary school playground or classroom, Truman is concerned about his peers’ opinions of him. So walking through this world with an unusual brother has given him many more opportunities to display his bravery, to stand up for his principles. Truman impresses me the most, however, when he shows the sort of patience, kindness, and maturity that having a brother like Jukie has taught him. Truman’s kind-heartedness has helped him recognize the quiet (and sometimes noisy) dignity and value in every person, often because of our differences, not in spite of them. More children, and the adults they aspire to emulate, would benefit from time spent reflecting on the strength and bravery that can result from a commitment to genuine compassion.