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!”