Sometimes I wonder if Jukie knows. Could our little boy be aware of the magic he spreads? Is it intentional? Like a benevolent little magician, does Jukie calculate just when we need it most? I see now that long before he was born, Jukie brought magic into our lives. My non-verbal boy has spoken to me in my dreams.
I met my husband Andy while we were both studying abroad in London. Even though we were only 20 years old, we talked about big life stuff. Andy told me, "I'm going to marry you someday." I responded, "I'm destined to have a child with special needs." How did I know? I just knew. Twenty-two years later, I've experienced enough Jukie magic to wonder if Jukie had been preparing me for what would become my greatest spiritual journey. As it turns out, I believe that this prior intuition, these messages from some challenging and mystical future, helped me to accept my eventual arrival in Holland in 2001, the year Jukie was born.
Was my intuition in fact Jukie whispering to me in my dreams, letting me know he was getting ready to join our family? The month before he was conceived, I told Andy, "a boy is coming." I'm glad I said it out loud, or I might wonder if this Jukie magic was indeed acting upon me. Throughout the pregnancy, we didn't find out the baby's gender; we wanted the surprise. But I informed everyone that he was a boy because he had already told me. Jukie's birth was beautiful, in a tub underwater, with no drugs. I "caught" him myself, scooped him into my arms, and sat with him in the warm water. We looked silently into each other's eyes for a long time. Little did I know that such looks would be our primary mode of communication for many years to come.
Our tiny Jukie Buddha looked a little like Yoda. He had droopy eyelids and wise, expressive eyes. As he grew in the first year, I came to see that Jukie was different from other babies in both appearance and behavior. When we learned of his diagnosis ten months after he was born, something called Smith-Lemli-Opitz Syndrome, we thought we had found an answer, the solution to Jukie. Obviously, no parent wants to hear that their child looks the way s/he does because of some mysterious and unheard-of syndrome. I wanted Jukie's droopy eyes to be JUKIE's look, not the SLO look. For a while, I refused to believe that Jukie would be anything other than a typical kid. We weren't always helped by the experts' optimism, and the oft-repeated belief that with his scores and advantages, Jukie was unlike any other child with SLO. "He'll go to UC Davis, rather than Stanford," one geneticist said. No one recommended Early Intervention services. With such encouragement, we moved swiftly into sanguine denial and lived there a good year and a half.
So, if I knew in my teens that I was going to have a special kid, why was it such a struggle for me to accept Jukie's diagnosis? Acceptance is still a process, and a long one. I don't know another parent of a child with special needs, no matter how hopeful they may be, who didn't struggle in the beginning. The short Emily Perl Kingsley essay "Welcome to Holland," written in 1987 (the year Andy and I met), helps give us one perspective on this journey.
When it came to understanding Jukie, those early experts were no experts, but a mom knows, doesn't she? Moms are the first to recognize something going on with their babies. And this is how it was for us. I saw that none of the specialists' or teachers' predictions were accurate. Jukie was on an entirely different path than the one we were imagining for him. He wasn't even on the same map! And eventually, as all of this became clear, we moved from denial right into despair. That was the period of time when we went into "fix Jukie" mode. Poor Jukie. Undoubtedly, he sensed our deep aching for him to change course. And it was around this time that I had the dream:
Andy, Geneva, Jukie and I are driving down a winding road which becomes more and more frightening as the road buckles and loops like a roller coaster. We struggle to keep our wheels on the pavement. There is no map in the car. We have no idea where we're going. And then a voice says, ask Jukie, he knows the way.
Wow. More Jukie magic. Just when life felt impossible, Jukie stepped in. It's probably been five years since I had this dream. And I think about it all the time. Not surprisingly people often ask where Jukie got his nickname. We have always credited his sister Geneva for naming him, as we first heard it from her. But, is it possible that Jukie whispered in her ear?
Here's the thing. Jukie can't talk. He resists eye contact. His little body is more fragile than ours. He faces many challenges every day. Still, he always seems to me to be the wisest person in the room. When the rest of us are running around the house, stressing about this or that, we'll often look over to find him quietly watching us, a bemused smile on his sweet face. And the Jukie magic strikes. As we stop what we're doing and focus on Jukie, he showers us with kisses as if to say, "slow down, it's all OK." It took me several years to figure out that Jukie often mirrors my feelings, rather my mask. Sometimes he will burst into crying shrieks which communicate his otherworldly sensitivity, as if to scream, "I'm feeling your stress, Mom!" And so, Jukie teaches us to slow down. Jukie wants nothing more than to run around and play, to eat yummy food, to take a warm bath, to have a good laugh, to give some sweet kisses, and to spend time with the people he loves. And truly, isn't that what life's all about?