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.