Friday, September 11, 2009

Meet Jukie

Meet Jukie. Probably more than any other photo I have, THIS one shows Jukie's true self. Yes, he is sitting inside a box on the top shelf of his closet. Yep, that box is dangerously close to falling off that shelf. Notice the artful balancing act with his right foot. Jukie lives on the edge. He's never happier than when teetering on the brink -- the edge of a high shelf, a rooftop at midnight, or the limit of his mom's patience.

We're used to the quizzical looks from strangers: Jukie calls attention
to himself. You can't miss the bright red chewy and set of keys dangling from his mouth. He's got a shriek like a fire engine to match his red hair. And he's the fastest kid you'll ever see whiz past. Passersby usually display the same facial expression, which seems to say, "what's WITH that kid??" Smith-Lemli-Opitz Syndrome is what. SLO is one of those rare syndromes that no one's ever heard of, including myself before we learned of Jukie's diagnosis. It means that Jukie cannot metabolize cholesterol the way that everyone else does. (It turns out, cholesterol is extremely important to every cell in the body.) Since he is non-verbal, Jukie communicates with pictures (PECS), gestures and kisses. Because he gets extremely frustrated, Jukie sometimes bites and screams.

One day, my daughter
Geneva said to me, "you know, we're kinda like The Incredibles!" I loved that, because I knew exactly what she meant. Our home calls for calls for superhero parenting. Secretly, I think of regular ol' parents as sort of civilians. One's relationships with Jukie requires more patience, empathy, kindness and sometimes sacrifice than typical. And in this way, Jukie gives back; we all have more patience, kindness and empathy for everyone. Jukie makes us all better.

I'm not sure how many times I've heard it from friends and strangers alike, but I'd guess it's well into the 100's - some version of "Jukie is really lucky to have you guys." People mean well, and I know that's true. We love, love, LOVE our boy and give him all that we have to give. But, honestly, I truly feel that WE are the lucky ones to have been given such a special spirit, all wrapped in an adorable redheaded package. I feel as if I know secrets that most don't know. And I am so incredibly grateful – for all of it.Having a special child means that you have a forever changed lens though which you view the world. I take just about nothing for granted, and value almost everything. Every small stride Jukie makes, everything the other kids do, each struggle that I have... I appreciate all of it! Jukie brings a spirit of innocence and purity into our lives (mixed with plenty of chaos as well, of course) which I feel honored to receive. Oddly enough, I am in a perpetual state of gratitude.


  1. Welcome to the blogosphere, Kate! I look forward to reading your entries!

  2. Kate, Your blog is wonderful!!! What an awesome picture and it does indeed show so much. I completely agree about the gratitude thing and the taking-nothing-for-granted thing. What a gift your red-headed boy is and what a gift this blog will be to so many. Keep going Kate, you're on a roll!

  3. What a beautiful insight to your family!!

  4. Congratulations for starting your blog! I love that photo of Jukie, but I can't help but constantly wonder how he got up there in that position without losing the box. That's Jukie in a nutshell.

    Everyone who is close with Jukie feels their life enriched for it. I, for one, feel so lucky to have him in my life almost everyday. He's a neat kid with a very silly and unique personality.

    I went to a workshop yesterday on creating work tasks for students like Jukie and I can't wait to introduce all my new, home-made tasks to him on Monday. I think he'll enjoy them!

    Have a great rest of your weekend. I can't wait to check back in to see what you've written next!

  5. Great blog Kate! Love the pix of Jukie -- it's exactly as in my mind's eye from your earlier descriptions. I'll look forward to reading more!

  6. Thank you, everyone. You've inspired me to keep writing...

  7. Hello Kate - Andy told me about your blog and I had to come over and check it out. Andy and I met years ago when a mutual friend of our died (Tito). Andy knew him much much better than I did. But I have been following Andy on Facebook and Twitter and he told me that you now blog. How fantastic! I never knew your story about Jukie and am so glad you have decided to share your family through a blog.

    Here's the other irony. I am co-founder of a web start-up that builds social features for blogs. We have almost 20,000 users, mostly women and mom bloggers. MANY of our users blog about their beautiful children with special needs. If you ever want to connect with them, just let me know. I'm sure they would love to follow your blog.

    You are a talented writer so keep up the blogging!



  8. Hi Holly,

    Yes, I remember you - think you visited us in CA with Tito. It's wonderful that you and Andy and Anna are still in touch. Anna is an important person in Andy's life. I know they both find comfort in each other and their memories of Tito.

    Thanks for the compliment. Yes, of course, I'd love to connect with other women/mom bloggers! Thank you!