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Today we celebrate our sweet Jukie’s 22nd birthday! Through his indefatigable spirit, Jukie teaches us all how to live: mindfully and in the moment.
And through his endless expressions of joy, Jukie teaches how to love. Reach for the hands of your loved ones. Throw your arms around them when you see them. Delight in one another.
We are the lucky recipients of Jukie’s many gifts. And we are so grateful for his presence in our lives. 🧡
My daughter last saw her college campus in Wisconsin in March of 2020 in the rear-view mirror of a van I was driving to California. Her brother, Truman, my BFF Mary, and I had flown across the country to rescue her. The pandemic had just begun, and she was told that she needed to move out immediately. None of us could have predicted that she wouldn’t return to campus for two and a half years, that is, not until today.
The trip felt both surreal and perilous, as if we were living out a real-life disaster film. On the third day, we white-knuckled The Beast through a blizzard atop a Wyoming mountain pass, a heart-pumping, frightening experience of unplowed roads and icy white-outs. At the hotel that evening, I was filled both with relief that we had survived the day’s drive, and with the sense of trauma we were all just beginning to experience; we were never going to forget this NDMRT or the earliest days of our new pandemic mindset.
Our stage of life determined how the pandemic would affect us. Like all kids, my children had to negotiate years of disrupted academic and social development. My parents had to isolate themselves in their senior living apartments. As they were among the most vulnerable to Covid, we worried for them daily.
I think especially of one group that was hit particularly hard: graduating seniors. Their lives came to an abrupt halt just as they were supposed to “commence.” Their best year of school ended suddenly with no final projects, no dances, nor even with goodbyes. Instead of moving on to exciting adulting adventures, the new graduates moved back home with their parents and watched goodbye speeches from their college presidents on YouTube. Although we were happy to have unexpected bonus time with our daughter, we knew she was devastated to miss the end of college. How does one move on to the next stage of life when the previous stage hangs unfinished and in limbo?
This weekend, the limbo will end. Two and a half years after that fateful March adventure, we’ve returned to Beloit College for the make-up graduation ceremony that the class of 2020 never got. As we walked around campus today, our Boonie shed more than a few tears. She pointed out favorite haunts, noted what has changed and what was the same. I imagine she’s feeling so many complicated emotions. And tomorrow she’ll get to experience the graduation ceremony she and all the graduates of 2020 deserved. We’ll cheer loudly for her, and so will my brother and my parents (Beloit grads themselves, who met here 65 years earlier 🥹). I’m so grateful to be here. For Geneva’s sake, and for the sake of everyone in the family who is still reflecting on how our lives have changed, I’m so glad we made this trip.
When people ask me the secret to a long, happy married life, I want to say: marry a poet.
Robert Frost said that “poetry is when an emotion has found its thought, and the thought has found words.” During uncertain and chaotic times, poetry consoles us as we listen closely to words that make us feel less alone and more alive. Amanda Gorman reminds us that “there is always light, if only we’re brave enough to see it, if only we’re brave enough to be it.”
We can’t all be or marry poets. But we can learn from them. The truth is, I have more questions than answers about the secrets to a happy life together. But I have learned well from my husband, Andy.
His example tells me that we should retain our humor and sprinkle it generously into our daily interactions, especially when life feels overwhelming. He reminds me of the importance of remaining curious about one another and maybe even occasionally planning surprises that knock a spouse’s socks off.
On the occasion of our 30th wedding anniversary, Andy presented me with a beautiful 167 page book with 100 previously-unseen poems he had written over the last year. Instantly, this book became my most prized possession, a physical manifestation of his love. Like Linus with his blanket, I’ve been carrying it from room to room around the house, reading a few poems at a time. I like feeling the weight of the declarations of his devotion in my hands.
The other well-kept surprise Andy planned was a backyard gathering of friends, there to celebrate our 30 years together. I knew my sweet husband must have something up his sleeve because he’s romantic like that. Like the evening we said “I do” all those years ago, this was a night I will always remember. Thank you, Andy for 30 years of love, laughter, play, and adventure. Let’s have 30+ more❣️
Maybe it’s the negative ions in the salty, humid air that calm my mind and lift my mood. Maybe it’s the gentle acupressure on the soles of my bare feet in the sand that grounds me and connects me to the earth. Maybe it’s the sound of the crashing waves that puts me in a meditative state and slows my own rhythmic breathing. Maybe it’s the memories of so many hours watching my children explore tide pools and fill endless buckets of watery sand that comfort me.
The peaceful soundscape, the consoling sights, the tactile pleasures of a barefoot walk, and the endless horizon of the ocean all remind me how fortunate I am to regularly visit a place of such calm beauty.
On this Father’s Day, I’m reflecting on my good fortune in meeting this man all those years ago. When I chose him to be my guy, I knew that in addition to being a man of great integrity, intelligence, compassion, and all-around goodness, he would be an exceptional father. Watching him interact with our kids in all of life’s daily, small moments brings me such delight. Even though there are all kinds of demands on Dr. Andy’s time and attention, Daddy Andy’s primary priority has always been the kids and me.
Andy brings the teaching. As one might expect in our home, impromptu writing lessons at the dining table frequently occur. Soon after they could read, Andy began dissecting sentences, and later, paragraphs, with the kids. He instilled in them an interest in writing. That interest developed into a passion. As a result, both our bookend kids call themselves writers.
Andy brings the energy. He’s up for practically anything and loves new adventures. Many locals have witnessed his daily walks with Jukie. They leave the house each day, often with no destination in mind and return hours and miles later with tales of new friends made and old friends encountered. One can measure their stamina in the shoes I have to replace every couple months. “Better shoes than cars,” Andy says.
Andy brings the laughter. He can’t sit anonymously in a dark theater without his distinctive, unrestrained, and ultimately contagious howl giving away his presence. Even though we’re all used to seeing a microphone in Andy’s hand, he rarely needs one because his voice projects. When our kids were little, I regularly had to remind Andy to quiet his natural stage voice during nap time. But the laugh — he can’t help that. We can hear it from every corner of the house. And no matter what I’m doing, I love that sound.
Andy brings the care. He wakes up every morning thinking, and sometimes asking, what he can do to improve our lives. We’re on his mind all day long. We feel and appreciate his love and devotion. And I am profoundly grateful for the wisdom to have chosen Andy to be my children’s dad.
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Normally Jukie takes the bus to school about 30 minutes away in the next town over. But today, Andy and I dropped him off together, wanting to see Jukie’s reactions to his old haunt, and wanting to see the reactions of the school staff that missed him so. Filming his initially skeptical reactions to the news that he was returning to school, we reveled in every element of Jukie’s triumphant return after more than an entire year without a single in-person experience with teachers, peers, or therapists.
For the past year, school has existed only through small Zoom boxes on Jukie’s iPad. We often wonder what Jukie’s experience of the pandemic feels like to him and how he makes sense of the new ways in which the world operates. In the early days, masks on people’s faces greatly disturbed him. He didn’t understand why, overnight, everyone disappeared behind a face covering.
Although not able to communicate verbally, Jukie is highly intuitive, having learned how to read facial expressions for context and connection. In fact, reading people is one way that Jukie negotiates the common misconception that people with autism are not social. The masking and social distancing that we have all been practicing, and Jukie’s inability to engage in school activities that give him some independence from his doting parents, have made it more difficult than ever for him to connect with others and to feel a sense of normalcy. Routine is important to people with autism, and he had suddenly lost all his school routines and with no way to process any of the confusing changes.
And can you imagine Jukie wearing a mask? He won’t even wear a Band-Aid! A year into the pandemic, I think our record at keeping a mask on Jukie is about 90 seconds. For the last 13 months, Jukie’s only outings have been his daily walks with his dad. They walked for miles and miles every afternoon and usually into the evenings. If you live in Davis, there’s a good chance you’ve encountered them walking along the greenbelts or in the arboretum, leaving behind them a trail of branches Jukie pruned from the trees they pass. Since this time last year, our two family hikers have walked over a thousand miles. I bet they’ve covered every path in town.
We waited until this morning to tell Jukie that today he would finally be able to return to school. I’m not sure he believed us until we pulled into the school parking lot. His eyes grew wide, and I think we all felt like maybe this was a dream — it had just been so long. While many of us spend time in long conversations with others, on social media, in Zoom rooms, or in our heads, Jukie lives in the center of his own awareness. Now that Jukie has returned to the teachers who know him so well, we look forward to him blossoming into a more comfortable version of himself.
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Today was Truman‘s first day back at in-person school since this all began. He was given the choice to continue distance-learning at home or to return for the last few weeks of 9th grade. He enthusiastically chose to go back to school. In fact, he may never have felt more excitement for school than he did this morning. Andy and I both dropped him off so that we could witness this moment together. Truman didn’t even mind me taking his photo, saying that he knew we would always want to remember this day.
I know there are a lot of differing, complicated, and sometimes conflicted feelings about in-person versus distance learning. In our home, we are all fully vaccinated (except Truman, who is still too young). And as Truman has not had any in-person interaction with his peers in a over a year, we felt that consideration of his emotional well-being superseded the risk. So off he walked into school this morning, wearing pants about five inches longer than the last time he made this walk, and new shoes the size of his dad’s. He turned back for once last wave, and I recognized a hesitant smile behind two layers of mask. I kind of wish I could have followed him or peeked into the windows to catch a glimpse of how it’s all going.
I’m thinking of parents all across town and around the country who have bravely navigated these uncharted waters, trying to keep it all together and make the best decisions for their families. And I want to express my gratitude and appreciation for wonderful teachers for the endless extra hours they’ve invested in teaching our kids with enthusiasm and diligence, all while reinventing their profession.
I wish all the students and parents a great first day back! May we extend one another compassion and patience as we figure it all out.
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This World Autism Awareness Day, let us celebrate and show solidarity with all people with autism. On this day, and on behalf of my son Jukie, I ask for more than just awareness.
We must promote acceptance of individuals across the spectrum, which includes recognizing the profound end of the autism spectrum: people like my son are rarely seen.
People with profound autism need a tremendous amount of care. This burden of love leaves many families feeling defeated and depleted. Especially during this ongoing pandemic, we need the support of advocates and champions to help us ensure that those living with autism have the resources and support they need to live life to the fullest.
My son is so much more than his label. He is not his autism. Autism doesn’t define him. He is a person who was born with a syndrome which causes autism. He’s more like you or I than he is different from us. Like anyone, my son seeks kindness, patience, and understanding.
Please recognize my son’s value. Include him. Treat him with dignity. Though he cannot speak, speak to him. Though he may not look you in the eye, he sees you. My boy is a font of curiosity and of love. Look at him. See him.
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This is my son Jukie. Jukie was born with a genetic disorder called Smith-Lemli-Opitz Syndrome. SLO is one of more than 7,000 rare diseases which are recognized today on Rare Disease Day, always the last day of February each year. A rare disease is one which impacts fewer than 200,000 individuals in the U.S. On this day, we come together to raise awareness of such diseases and show our support for one another.
Most people have never heard of Smith-Lemli-Opitz Syndrome. My husband Andy and I had never heard of it before receiving Jukie’s diagnosis when he was 10 months old. We didn’t know that we were both carriers of the gene mutations that cause SLO in one in four pregnancies for couples like us. Twenty years later, we know more about SLO than most physicians. There’s a steep learning curve in the beginning for parents like us, but we loved our little guy so much that we had to learn quickly to figure out how we could best support him.
In a few words, SLO is a metabolic condition involving cholesterol. Many of his challenges have resulted from his difficulty in metabolizing cholesterol the way the rest of us do. We give him supplemental cholesterol every day, but the SLO metabolic error causes (and caused) much damage before birth. One of the NIH research trials Jukie has participated in reviewed how cholesterol could better reach the brain where people with SLO really need it. Jukie has participated in many medical trials, and has undergone multiple spinal taps so doctors could better understand the blood-brain barrier, but after all these years, researchers still haven’t found a way to help his brain.
SLO causes a wide range of challenges, and every individual is unique. Sadly, because every organ in our bodies depends on cholesterol, many children with SLO die at or before birth. Andy and I have had four pregnancy losses. We’re so grateful we didn’t lose Jukie.
On this day, we celebrate Jukie and focus on his many strengths and gifts.
Jukie lives in the moment; his example encourages the rest of us to do the same. He stops walking to look up at beautiful skies. He pauses to listen to the whoosh of the wind. Sometimes he looks intently into our eyes and touches our face. He shows us that life can slow, and we can benefit from a long pause.
Jukie communicates with PECS, sign language, and an iPad, as well as with smiles, laughter, and love. Jukie demonstrates that the most important messages can be conveyed with a look or a touch.
Jukie’s joy is front and center. He seeks and finds joy throughout the day. He spreads joy with his infectious laughter and impish sense of humor. In addition to his sometimes plaintive yodeling, Jukie fills our home and our hearts with joy. We are grateful for everything he has taught us, and we invite you to join us in celebrating him on this special day.
