Friday, September 18, 2009

Missing Jukie

Is it wrong to be as excited as I am? Jukie is leaving for a week tomorrow, and I can’t wait. That sounds terrible. I love that boy. I LOVE that boy. But, along with his departure goes the constant vigilance. I’ll have eight days where I can leave all of the doors in the house open. All the pictures will stay on the walls. No one will chuck Geneva’s violin down the stairs. I won’t hear water running somewhere and panic that Jukie’s flooding a room. At least this week, I won’t have to replace a toilet due to God-knows-what being flushed down it. I won’t find anyone climbing the back fence without his pants. We’ll generate ½ as much laundry.

Jukie and Andy spend a week at the National Institutes of Health and Johns Hopkins every six months. Jukie is enrolled in two SLO Syndrome studies. He will be seen by the Genetics, Speech, OT, Neuro, and Ortho departments. He’ll be studied by the autism researchers. He’ll be sedated for a spinal tap. And he’ll have an all-night EEG (during which daddy will sleep on top of him in the hospital to keep Jukie from pulling the electrodes off of his head). This morning when I told Truman that Jukie was going on a trip to see his doctors for a week, he asked, “is he scared?”

Truman’s question haunts me. I truly don’t know how Jukie processes these weeks. I know that he occasionally cries when hearing us talk about NIH. I know that he’ll sometimes scream when we’re there, especially at the beginning of the trip. What if it’s terror that he’s experiencing? It’s so hard to be Jukie. He has little say in where he goes and what he does. We ask of him so much more than we ask of ourselves. I have certainly never had even one spinal tap. How would any of us feel about spending a week attending back-to-back doctor visits, all while being unable to express our thoughts and feelings. And Jukie handles most of it with typical Jukie sweetness and love. I worry less about my boy because I know that he’s with the Best Daddy in The World. Andy will make sure that Jukie has every opportunity to run and play and get all of his Jukieness out.

And back at home with the bookend kids, I know that it’ll only take a day or two for me to start missing my little imp. First, I’ll miss his smile. Jukie’s smile does light up a room. And his laugh – it’s infectious. When Jukie laughs, everyone laughs with him. I’ll pine for his sweet kisses and early morning snuggles. I’ll even miss his sippy cups and chewy keys drying on the rack. I might even sniff his jammies; no one smells sweeter than Jukie. I can get all nostalgic over just about anything “Jukie.”

By the time he and daddy arrive at the Sacramento airport, I’ll be RUNning to my boy. I’ll look to his eyes to hear all about his trip; they’ll tell me that it was good. And his kiss will reveal how much he missed me back.

Sunday, September 13, 2009

Jukie Magic

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?

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.

Three kids & IKEA

Today I took the three kids to IKEA. Are you already laughing?

After lunch, I put three crying kids in the car, trying to sound cheery, hoping my manic and misplaced frivolity will rub off on them, “we’re going to IKEA! Hey, we’ll check out the toys, and then we’ll eat some of their famous apple pie and chocolate cake. It’ll be great…!” Geneva was crying because I made her brush her hair. Truman was crying because I forgot to let HIM open the garage door. And Jukie was crying because his brother and sister were crying. They’ll feel better when we get to IKEA, I reassured myself.

Things started off pretty well. Jukie tolerated riding in the shopping cart for a while. Truman had no patience for the cart, and he usually does less damage to the stores we visit, so I sprung him immediately after we got off the elevator. Soon he was running like a junior sprinter through the housewares, the Swedish offices, and amid all the flimsy colorful furniture, with Geneva chasing after him like a handler making sure a Soviet athlete has no chance to defect. Speaking of Soviet rituals, soon I found the long line I had to wait in to order our new desk while Geneva occupied Truman by spinning him in the office chairs. This isn’t too bad, I’m thinking. I’m such a seasoned Mother. I have the experience necessary to lead this expedition. I can handle this trip.

Then it started. Jukie became less patient with the ride in the cart and started chucking his set of keys at passersby while sharing his signature Jukie shriek (a cross between a howler monkey and a hyena). Truman began venturing further and further away, trying to lose his personal security guard. Then Jukie started with the shoes. You might not know this, but Jukie has a thing about shoes. He hates ‘em, feels that they are unfairly restrictive. So, to show his displeasure with the slow-moving line and with his mobile Ikea cage, Jukie reverted to a practice favored by many Iraqi journalists: throwing his shoes at human targets. I pretended that I understood what he meant with all this sandal shot-put, and let him out of the cart. Holding Jukie’s shoes and my tongue, I stepped away from the cart for a moment to watch the boys run amok in different directions, happy not to hear anything breaking. How do the fates repay me for this maternal diligence? Someone stole our cart – the cart with the information about the desk I ordered (and the purpose of our waiting in that 20 minute line). So I reassign Geneva to watch Truman while I drag Jukie all over looking for the malefactor who took our precious cart.

Jukie didn’t like the cart, but he really didn’t like this new journey or the feeling of my Kung-Fu grip on his wrist, so he starts taking bites out of my hand while trying to keep up with me. Soon the other shoppers were wondering why this woman with a screaming banshee in tow was examining their carts, looking for something suspicious (or stolen). I let Jukie go for just a moment (you probably expected me to use that phrase sooner or later) in order to insinuate myself, again, into the line to order the desk, when he takes off like a shot looking for the only person at Ikea with more sensitive ears than Jukie’s. You guessed it – Jukie ran headlong into a blind man. At least I got there to apologize before Jukie stole the man’s cane. I look around to see if anyone else is noticing the tragicomedy unfolding (the blind man’s unfolding white cane) when I catch a glimpse of Truman standing on top of a train table. Emulating his big brother (and our cart thief), he had stolen someone’s roll of wrapping paper and was bashing light fixtures with it. In a stroke of genius, I stow Jukie in a crib – another cage for our wild child – while I collect Truman.

So I try to reassert the manic cheeriness that we started with in the minivan. “It’s time for a treat break, everyone! Let’s go find that pie and cake I promised you!” Maybe I shouldn’t have been surprised that the dessert shelves were empty. I ask myself “How am I gonna get out of this one?” The woman behind the counter tells me that all of the cakes and pies are frozen. Of course they are. Whatever. I tell her that I’ll take one of each. The kids are such a handful in line that a nice woman behind me takes pity and tells me that she is a mother of four, three of them boys, and that she knows what it’s like to deal with unruly children. Of course, I’m thinking, unless you have a Jukie, you have absolutely no idea, but she’s sweet and empathic, and I enjoy a momentary reprieve from my stress with a nice conversation. In response to this mom’s comment about Jukie’s beautiful red hair, I look down and see that Jukie has taken his shoes and socks off. Again. So while I am bending down to put them back on, the woman arrives with our frozen pie and cake. She didn’t see me so she takes our frozen confections back to some huge freezer in the back of the kitchen. As I stand up, Geneva fills me in on what happened, so I start waving my arms wildly saying, “I’m over here! I’m the woman who wants the frozen dessert!” Oh. My. God. Is this really my life? It’s like I’m Lucille Ball.

While we were waiting to pay for our frozen treats, Truman starts screaming with sudden outrage that HE was not the one to put the food on the tray: “I wanted to do it. I wanted to put dat on dere… .” Jukie’s shoes are off again. We head over to the closest table where Boonie boxes Jukie into the booth so I can gather our requisite ton of napkins and silverware. I arrive back to the table in time to witness Truman attempting to carry the frozen chocolate cake to his spot at the table. Thanks to lightening quick reflexes (developed over the last seven years of Jukie’s life), Geneva and I each catch a section of the cake, thus preventing it from landing in Truman’s lap as his plate tipped vertically. As I’m searching for my Excedrin Migraine in my purse, I watch Truman forget that we don’t tip cups while drinking through straws. Juice fills his lap. More crying.

Too bad I chose to wear a yellow shirt to Ikea, for as we were checking out every shopper in the Sacramento Valley was asking me for directions, advice, and translations of the capitalized Swedish words on their potential purchases. With a boy under each arm I want to scream “Do I LOOK like I work here?!!!” Then I start wondering if my Lexapro is a placebo - as if there had been a crazy mix-up at the pharmacy. On our way out, Truman insists on riding one of those huge flat carts, with Geneva as driver. What do I care? Go ahead and push him, I tell her. So, she does, only the wheels move in every direction for maneuverability. Like most of us with those unwieldy IKEA vehicles, she ends up crashing it into everything and everyone in their path. Luckily the boys’ screaming helped people realize that they should step aside, kinda like we do when we hear sirens behind us.

And at the self-service checkout, nothing scans at all. At that point, I KNEW I had to come home and write this story, if only for therapeutic reasons. Happy new year!