Sanguine in Seattle

When your child is first diagnosed with a rare genetic syndrome, you feel overwhelmed with the steep learning curve and with the imperative to learn quickly so that you can take care of all of your child’s many needs. In the case of Smith-Lemli-Opitz syndrome, most physicians have never seen another child with the syndrome and know nothing about it. As a result, as a new parent, you can’t ask your pediatrician for guidance, even in the most vital areas, like feeding your newborn or tracking his growth. 

When your baby spends her early weeks in the NICU, you’re filled with fear as she fails to thrive. You read that 80% of babies with SLO die early on. Sometimes your baby’s physician tells you that your baby likely won’t make it to her first birthday. 

The isolation of your unexpected parenting journey sets in, along with increasing panic. You start to wonder if anyone in the world understands your life or could possibly offer comfort or relevant advice. 

 

If you’re lucky, you find the Smith-Lemli-Opitz Foundation. And then the cavalry of fellow parents arrives. The truth is, no one except another SLO parent “gets” it. We bring you in like a long-lost cousin, flooding you with photos of our children, welcoming you from all over the world, sharing experiences, and telling you what you need to know. You notice that our kids look like one another, and you fall in love with every new face, a love that supplants your earlier feelings of panic. Our shared experience bonds us for life like a second family.

 

Working for the Smith-Lemli-Opitz Foundation for the last 11 years has given my life purpose and meaning. It’s been exciting to help grow the Foundation into an international organization. We just wrapped our Family and Scientific Conferences in Seattle, our best conferences yet! Lucky for us, I know a fantastic MC and quizmaster, so I put that guy to work for us. 😍🧔🏻‍♂️ We took time to connect with one another, laugh about stories about our unusual families, and learned from all of the experts on Smith-Lemli-Opitz syndrome the Foundation brought together, and live-streamed to families all over the world. 

 

If you don’t have a kid with a rare disability, you might find it difficult to appreciate the bond that ties us to one another. The connection I share with the many lovely SLO families that I have met is one of the greatest gifts in my life. From this past week, I will remember the emotional four-way group hug with my fellow board members, the conversations with new families whom I already love, and all of the laughter that we shared together. Despite (or perhaps because of) the challenges we share, I’m still smiling over all of it. I have refilled my bank of connection, support, and love, and I’m already looking forward to our next conference in 2025!

Graduation Day

 

Today we’re filled with pride as we celebrate Jukie’s graduation! 👨🏻‍🦰🎓 As we’re still processing all our complex emotions about this time of transition, I’ll let Jukie’s wonderful teacher of the last 11 years speak about this momentous occasion. Here is an excerpt from the commencement address given to and for Jukie by his devoted teacher:

 

“Over the years, half of Jukie‘s life… I have watched Jukie grow, learn, and define himself. Throughout everything in this journey, Jukie has steadfastly remained Jukie. We have learned to work together, but everything is in negotiation. I love the way he advocates for himself and for what he wants. He is willing to discuss with you what you want, but do not take it as a given.

Often in this job, you learn as much as you teach. Jukie is the professor of patience, the maestro of minutiae, the department chair of feng shui. Without him, how would we know which way to cross our legs? How to wear our shirt sleeves fashionably? And why you might want to consider a shorter haircut?

 

But Jukie goes much deeper than that. Jukie is a very accurate reflection of your moods, your joy and your sadness. He is sensitive and caring. He is loving and honest. You will always know where you stand with Jukie.

 

Jukie is also incredibly smart. That does not mean he necessarily wants to learn what you are offering to teach, but that when he wants to know how to do something, he will figure it out. Jukie has forced me to become a better teacher, to think in new and creative ways, to become more sensitive myself, and to broaden my view of the world around me — and to know the precise positioning of my fingers to give the ultimate head squeeze.

 

Jukie, I am going to miss your sly smiles, your oh so Juk-ish sign language, and your laughs. Oh the laughs. 

 

And you, Andy, Kate, Geneva, and Truman, I thank all of you, for all of the trust you have put in us with your beloved Jukie. Your family’s love and support for him has never wavered and never will. Jukie is in great hands and I wish all of you the best. I hope the sequel to ‘Where’s Jukie?’ is titled something more like: ‘Jukie’s just Chilling.’

 

And now, let’s enjoy one last obsequious bow from Jukie!”

Fluency in Love

More than once over the last week in my hometown of Chicago, I was asked how long I’ve lived in California. Thirty one years ago, when I was younger than Geneva is now, I decided long-distance love was not enough for me. I wanted to start a life with my poet out west. This was the best decision I’ve ever made. 

 

Leaving my family and friends behind was hard, especially leaving my mom. In a selfless act of mama love, she encouraged me to follow my heart. “I see the way your eyes light up when you talk about Andy,” she had said. With that conversation, she gave me her blessing and even a gentle nudge to make the big move.

 

Mom came to visit us every chance she got. We took her on hikes, taught her to rollerblade, and introduced her to California wines. She enjoyed accompanying me to my favorite places, and she befriended my friends. And whenever I needed her, she flew to my side. Mom came for the births of our three kids. Vigorously rubbing my back all night long when I had back labor with Geneva, she helped me through the hours with a continuous stream of encouraging words. Three years later, Jukie came so fast that only Mom and Andy attended his birth. I didn’t panic because my mom was by my side. Her youthful energy and constancy were blessings to me. All those years ago, I never imagined my parents growing elderly. 

 

With time, Mom’s visits slowed down, and when Covid hit, they ended. As she was no longer able to come to me, now I go to her. With reversed roles, my mom now welcomes my visits and accepts my help.

 

No one tells you how difficult it is to watch your parents age. Watching this process from the other side of the country feels particularly heartbreaking. Maintaining our connection now that phone conversations have become so challenging feels nearly impossible. 

 

And so leading up to this trip, I was filled with uncertainty about how my Mom and I would connect. I discovered that love is the focus of every interaction now. I’m grateful to see her look of recognition and to hear her use the nickname she gave me when I was little, the one only she uses. I enjoy our ping pong games (her new favorite pastime) and delight in her beating me. I’m so happy to see her smile and hear her laughter, even when I don’t know exactly why we’re laughing. Joy is the point. When words start to disappear, love remains. Hugs are a language we all speak fluently.

Together we are Strong

 

“Being healthy is the crown that only the sick can see.”  Hasan Minhaj 

 

Health and access to health care are fundamental human rights. As a reminder not to take good health for granted, today we celebrate Rare Disease Day, an event that takes place every February 28th (or in leap years, February 29th, the rarest day of the year).

 

Rare Disease Day is so much more than a one-day event. It’s a rallying cry for a global movement of people around the world working toward health equity and access to diagnoses and treatments for people living with rare diseases. A disease is considered rare in the U.S which affects fewer than 200,000 people. The example I know best is Smith-Lemli-Opitz syndrome, the disorder my son Jukie was born with. 

 

Since its beginning 15 years ago, Rare Disease Day has helped to build a diverse International community of people with many differences in diagnoses and experiences, but united in purpose. Through sharing the experiences of people living with a rare disease, together we hope to change and improve the lives of 300 million people affected worldwide, as well as the lives of their families, caregivers, and supporters.

 

A day like today can help people like Jukie feel less disconnected from their local and national communities. Alone we are rare. Together we are strong. 

 

To learn more about Smith-Lemli-Opitz syndrome, visit Smith-Lemli-Opitz Foundation 

Jukie Joy

 

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. 

He invites us to notice the gentle wind rustling leaves in the trees, to listen to the sounds of birds calling one another. Wherever you are, Jukie says, be there fully. 

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. 🧡 

Collegiate Closure in Wisconsin

 

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.  

Many of you remember our National Disaster Massive Road Trip (NDMRT), as Truman named it. We rented a huge van, which we immediately named The Beast, and which still barely fit all of Geneva’s belongings, and we drove four days back to California. On the NDMRT, we encountered many fellow unhinged cross-country travelers, everyone trying to get somewhere fast, all of us eyeing each other with trepidation as we sought to keep our distance from one another, both on the road and at every rest stop. 

 

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.

30 Years

 

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❣️

Our Antidote

The world is all too much right now. I’m continually feeling the need for a recharge and a reset, and I find that nothing fills this wish like a getaway to the sea. If I could, I would begin and end every day with wet, sandy feet, with wind-blown hair, and with a walk along the beach. Some like the mountains. I prefer the ocean. 

 

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.

Daddy Brings It

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 joy. Spontaneous dance sessions in the living room have been known to occur, whether the kids want them or not. When he walks in the front door, Andy brings his smile, a happy greeting for all, and a kiss for me. He’s a naturally positive person who gives everyone in his life his best self. 

 

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. 

Choosing Joy

 

Happy, happy birthday to our dear Jukie! Although it feels impossible to believe, today we celebrate the 21st anniversary of his birth. Wasn’t it just yesterday that Jukie was spinning endlessly on the tire swing in our back yard, running with abandon across the expanse of a neighborhood park, standing on his head against the wall while giggling, and running around our rooftop at midnight (while also laughing his head off)? Ah, the memories.

No one really teaches parents how to transition through different stages of parenthood as their children grow. We discover and navigate our way through each age, learning to adjust our parenting strategies as we go. Just as one can’t ever feel quite ready to become a parent, I think we’re often not quite ready to see our kids’ childhoods end. No one tells parents how wistful they will feel when they recall hearing their kids’ young voices or holding their little hands. At the same time, nothing prepares a parent for the thrill of seeing their young adult child launch and thrive on their own.

Parenting a child with profound autism sometimes makes Andy and me feel as if we exist on a different planet from the rest of the world, a planet where everything is heightened. Parents like us fear for our children’s future, knowing they will not launch as their siblings will. We sometimes feel guilt, wondering if we are doing enough to help our kids reach their potential. We also take pride in even the smallest of accomplishments, as we know that reaching each goal took tremendous tenacity and effort. And sometimes we feel isolated, wondering if we have any idea what we’re doing. If we’re lucky, we have friends who also live in this alternate world, who know and understand. 

For autism parents, birthdays can bring up a sense of ambivalence: we are reminded of all that our child will never experience, and thus we grieve for the dreams we had for our children. I don’t know what the future holds for my son Jukie. And this sense of the unknown terrifies me. And while all of those conflicting feelings leading up to my son’s birthdays are normal and expected, on the anniversary of Jukie’s birth, I protect our tenuous hold on optimism and forward momentum by choosing to focus on joy. Jukie is joy.

Zen Jukie lives in the moment, and he trusts in the world around him. He doles out pure love in high fives, laughter, and hugs, and expects and receives all of that right back. He trusts and accepts others and complies with most of what he is asked to do. He believes in sharing and being shared with, such as by snagging the lime from my drink the moment I turn my head. Sharing his big and often unexpected smile, Jukie busts out laughing when nothing seems funny, and we can’t help joining him in his infectious joy. 

And today, the occasion of his 21st birthday, our boy Jukie won’t quite understand the reason for the cake, the gifts, or the extra kisses. He won’t know the significance of this milestone birthday. But Jukie will feel our love, our attention, and our focus. He will know that we treasure and adore him. And we will feel so grateful, and so joyful, for having Jukie in our lives.