Wednesday, December 16, 2009

Mommy Angst

Motherhood is bittersweet. No one can clearly prepare a new parent for the wistful parts of the journey. Before we have children, we know that some heartache awaits us. But who knew that our children’s little traumas would hurt us so much?

There’s a saying among mothers: “little kids, little problems – big kids, big problems.” I used to fear that my kids’ struggles would only grow and intensify as they grew older. You mean it gets worse? Harder?

When Geneva (who is now 12 years old) was in nursery school, she struggled over issues such as what song would be sung in school on any particular day. Would it be the song about the baby ducks swimming away from the mother duck?! If so, everyone at school would hear her panicked cries over duck separation anxiety. I remember that we worried about whether she’d be able to keep her pants dry for 2 ½ hours at school. In kindergarten, she was afraid of the loud flush of the school toilets. I chuckle now, thinking about how we stressed over this toilet issue. We also worried that she’d forget to put on her coat before heading outside to eat lunch. And I wondered if some of the much bigger 2nd or 3rd graders would mow her down on the trike path.

Usually, I know what to do when faced with parenting’s little dilemmas. But now that Geneva has officially entered “tween-hood,” I’m finding more and more that I am not always sure what to do. Along with this uncertainty, I’m feeling angst about my role and about our mother/daughter relationship.
Last week, Geneva spent a week at outdoor education camp. We had never been separated from each other for more than a night. While I was happy to let her go and experience an opportunity to live and cope independently (not to mention experience the wonderful curriculum), I found living without her for that week to be more bitter than it was sweet. I’m still not sure which of the two of us suffered more anxiety. I wrote her a letter to open each day. I hid a couple surprises in her suitcase. What and odd feeling, not knowing how she was doing each day. Of course the goal of parenting is to teach your child how to need you less and less. We’re supposed to prepare them for the day when they will fly the coop. But, I didn’t exactly enjoy this preview. I couldn’t WAIT to pick her up on Friday. And when I did spot her at pick-up, I saw the biggest, prideful smile.

This week, Geneva’s first pet is dying. Parsley the Hamster has perhaps experienced the most love and attention of any black bear hamster in recorded history. All of her care and the money for her needs have been provided by Geneva. She dotes on her daily, but Parsley’s still dying. And there’s nothing I can do to fix it. Any mother would gladly take on her daughter’s heartbreak to keep her from experiencing such sadness. If only it worked that way. Watching my children struggle may just be my biggest challenge as their mother. Knowing that I can’t fix it, and often even worse, that I shouldn’t fix it, and knowing that they need to learn to handle their own difficulties, I have learned that I need to step back at the moment that I want most to step forward. I remind myself that my gradual letting go will help these three increasingly resilient children grow into capable adults. Does this realization lessen my Mommy Angst? Not so much.

Tuesday, November 17, 2009

Mother Warrior

It’s a good thing that I was raised to fight. Sandwiched between two brothers, the three of us within only 2 ½ years in age, I learned early to stand my ground. As my parents divorced when I was in first grade, my brothers and I learned to survive in two different households, one in the suburbs with our mom, and each weekend on the Southwest side of Chicago with our dad. That kind of early experience will toughen a kid, and it did me. By the age of 12, I was taking trains and buses all over the city, often by myself. I knew how to navigate my way around Chicago, which means I understood that different neighborhoods required different behavior. I knew which areas I had to avoid altogether, and in which areas I had to be hyper-vigilant to guard my safety. In addition, my parents made an effort to take us everywhere, exposing us to all sorts of different experiences. I spent most weekends exploring some part of the city: the museums, performance spaces, parks and restaurants.

When it came time for college, I didn’t choose any easy path. I chose Antioch College in Ohio, which required that students move each quarter to “co-op,” that is, to complete an internship as part of their education. We’d study on campus for a quarter, leave to co-op the next quarter, and return back to Ohio for more study. Summers were spent co-oping as well. As if that weren’t enough, most of us studied abroad, as I did in London, England (where I met my fabulous husband). Although I remember feeling keenly aware and occasionally frustrated with the sometimes difficult path I had chosen, I knew it was the right one for me. I learned a tremendous amount, perhaps most importantly about mental toughness.

A friend of mine lamented the other day that as a stay-at-home mom she was “wasting” her education, and not using what she had learned. I would guess that most SAHMs struggle with this “waste” at some point. (Fortunately, my degree is in Psychology, which I have ample opportunity to use every day! Had I studied plant biology, maybe I’d feel more conflicted.) But, I see it differently. Nothing that we have done is a waste; it all forms us into who we are. Our experiences make us US.

And that brings me to the point. I am thankful for my tough upbringing because I draw on it just about every day. All moms are warriors. Mothers of kids with special needs are super-warriors. There are so many large battles – for health insurance, with school districts and sadly, for our kids’ very lives. But often the little battles are almost more difficult. Usually, no one is there to help support a mom when she’s fighting the small fight, and it’s not always clear how to proceed. The other day, I took Jukie for a haircut. I stood right next to him and offered to help the hairstylist in any way that I could. About half-way through, she stopped and announced, “well, that’s not the best haircut I’ve ever done, but it’ll do.” WHAT? It looked terrible. And Jukie had been using great behavior. All I can imagine is that this woman figured that it didn’t matter so much what his hair looked like. Sure, Jukie wouldn’t have cared. But, I certainly did. So I insisted that that hairstylist pick up her scissors, get out the clippers and give him a proper haircut JUST AS SHE WOULD FOR ANYONE ELSE. I shared this experience with the mom of a “typical” child, who remarked that she’d never have had the courage to ask the woman for a better haircut. Another example: Jukie sees a wonderful pediatric dentist. But, while the dentist was content to imagine that Jukie’s teeth were healthy since his sister’s teeth were, I had to insist that he actually examine them. I understand that the dentist didn’t want to traumatize Jukie. But, I also think that the dentist imagines that Jukie doesn’t need or deserve what other kids get. That infuriates me. Now Jukie’s every successful dental exam leaves me smiling in pride. Jukie can do it, I think to myself; give him the chance.

This same inner strength is needed every time I take Jukie out in public and encounter some overly curious person who just can’t help putting her foot in her mouth. Once at Costco a woman slowly followed me throughout the warehouse as Jukie screamed his head off, and acted in a typical Jukie fashion. I’d have thought it was my imagination except that she finally approached me and asked, “what’s WRONG with him?!” Fighting the urge to ask what was wrong with HER, I replied, “Nothing. He is Jukie.” My daughter laughed, I smiled at the woman, and we were on our way.

Last year, we took Jukie to the White House. Perhaps that seems almost ridiculously ambitious. As we were on the Metro heading to Pennsylvania Avenue, big sister Geneva asked, “so…um…is Jukie ALLOWED in the White House?” I chucked and said, “of course – EVERYone is allowed.” True, I almost ate my words when Jukie tried to run into the roped-off rooms, tear the pictures off the walls and reach for a sharpshooter’s rifle (all true), but he walked out with the White House still intact. We all high-fived each other and felt great pride in Jukie’s success (though if anyone’s White House deserved a little Jukie vandalism, George Bush’s did). Jukie deserves no less than any other child. And I will never stop fighting to make sure that he receives the same treatment the rest of us would expect.

As we’re heading into a Season of gratitude, I find myself thinking daily of everything for which I have reason to give thanks. Today, I am grateful for my tough childhood, knowing that it groomed me perfectly for my career as Mother Warrior, especially because I have a kid who demands more protection than most.

Tuesday, November 10, 2009

Second Family

By the time Jukie was diagnosed at twelve months of age, we had already spent one year with our “typical” baby. He was going to grow up, go to college, get married, and probably have a family of his own. And before that, he was going to play on a soccer team, attend his big sister Geneva’s school, and experience the usual childhood that everyone takes for granted. Instead, just before his first birthday we learned that he was born with a serious and rare metabolic disorder called Smith-Lemli-Opitz Syndrome (or SLO). Wow. It was Thanksgiving weekend when we got the phone call; we were in Las Vegas to spend the holiday with family. In shock, I tucked that news into a compartment in the back of my mind. And the genetic team encouraged us to live in this compartmentalized denial. They told us that Jukie was so unusual for the syndrome that it made no sense for us to learn anything about it. And, hey, if the specialists thought I should bask in denial… who was I to argue? I could ignore devastating news if that’s what was asked of us. And it was – so I did.

After a few months, I slowly started to realize that the medical team was wrong. Jukie WAS seriously impacted by this syndrome, and I had to face it. So, I did what I do best: I started building a community and a system of support. I began regularly meeting for dinners with other moms of kids with special needs. I loved getting to know these women, and found sharing stories, hopes and fears immeasurably helpful. But something was missing – the other parents of kids with Jukie’s diagnosis. SLO is so rare that there are only a handful of (known) families touched by the syndrome in each state. The problem was that I didn’t feel that we belonged in that community. In just about every way, Jukie was unusual, for, unlike other kids with his syndrome, he was meeting his developmental milestones. I thought that the other SLO families would have a hard time accepting Jukie. And, honestly, I was afraid that contact with families whose kids weren’t doing as well might depress me.

Everything changed when I received a phonecall from Fargo, North Dakota. The call came from a woman named Gretchen who had read something I had written on the internet about Jukie. I could hear the agony in her voice. She thought that just maybe her son Markie had what Jukie had. I heard a kindred spirit and loved this woman instantly. In some odd way, I felt as if we had known each other forever. We talked for hours. Even though the Mayo clinic had told her that Markie didn’t have SLO, Gretchen and I consulted with each other as two laypeople (Mommies!) and concluded that he did. To make a long story short, he was tested again, this time positive for SLO.

And that’s when my life started turning in a new direction. Gretchen and I talked endlessly on the phone, giggled about our silly similarities, nicknamed each other “Toots,” and understood each others’ lives like no one else could. In league with my husband Andy, Toots flew out to California to surprise me and visit for a long weekend. We hugged and cried in the street when we met. It felt like meeting a long-lost sister. Family. And somewhere down our lineage, we truly are family, for Markie and Jukie both have a rare mutation for SLO that only two others in the world are known the share, the M1V. What are the chances that one M1V Toots in Fargo, ND would find another M1V Toots in California? No chance. We know that we were meant to connect.

Four years ago, I didn’t know anyone other than Jukie who had SLO. Today, I know many, and truly cannot imagine where I’d be without my SLO family. We KNOW. Nothing needs to be said, no explanations necessary in order to understand each other. I feel as though all of the kids with SLO are nieces and nephews to me, and cousins to one another. Any of us would do absolutely anything for another SLO family member. And we speak shorthand. In fact, we even intuit with one another quite a bit. I once sent an e-mail to Toots mentioning a concern that I had about Jukie. The phone rang not five minutes later – at 11:00 PM. Toots sensed my anxious mood and knew to call, and I burst into tears the moment I heard her voice.

Technology enables us to participate in each other’s lives so much more than ever before. More than anything else, what I love about Facebook is that it has deepened our SLO community’s connection. We follow the kids’ and each other’s daily lives as if we were all just down the street from one another. So when Melissa writes that Carson is finally taking the bus to school again after a long hiatus following foot surgery, we cheer him on, knowing the struggle to get there. When Blossom isn’t herself, I worry about her health AND the sanity of her mama, Lotus, who is home taking care of her. I wait for pictures of Blossom smiling again, and know when I finally see happy photos, that things are better. Although there are so many more families than I can mention here, I want to say that I LOVE YOU ALL! You mean the world to me. Thank you – for EVERYthing.

Jukie will never read these blog entries, this record of our Jukie discoveries and hopes. And although that Thanksgiving phone call eight years ago was difficult to answer, with this blog I remind myself that I so appreciate all the lessons Jukie and his little SLO cousins have taught me. Who could have predicted that such a little guy would have so widened my world!

Tuesday, November 3, 2009

Dreaming of Italy

Eureka! I got a gift this week. While I slept, I had an “ah HA moment.”

We’re all so wise when we sleep. Our dreams show us all sorts of wisdom that we didn’t even know we had. Somehow, our unconscious mind holds answers that we just can’t see in our waking lives. In fact, one might say that our dreams channel our unconscious, speaking directly, trying to communicate that which we need to see or to learn. Because my dreams have been so magical and instructive, enlightening and sometimes surprising, I’ve learned to listen to this knowing inner voice.

The other night, I dreamt that my husband Andy and I had a trip to Italy planned. Italy – the intended destination in the Welcome to Holland piece! The conflict in the dream arose when we couldn’t get there. Hmmmm… couldn’t get to Italy… no surprise there. Most of the dream involved our trying desperately to make it to the airport in time for our flight. We miscalculated the time. Our transportation didn’t show. We got lost. It was one thing after the next… until a phone call. Someone explained that we could get there immediately as long as we LEFT OUR BAGGAGE behind. And so we did, and I awoke as our plane was taking off for Italy. Wow. But, what does it mean? What’s the message I’m supposed to learn?

Unlike the couple in Welcome to Holland, I wasn’t moving to Italy in the dream, just trying to vacation there. In fact, I DO escape to Italy from time. For me, I am in Italy when I am free of the stress associated with being Jukie’s mom. One thing I’ve learned over the years is that trips to Italy for parents of kids with special needs don’t just happen. Rather, we have to actively manage our lives in order to travel there. And what does that mean? Self-care – we have to learn to take care of ourselves. We so lovingly and expertly care for our children. But we need care too. When I take care of myself, I’m in Italy.

For me, this realization is one of the secret gifts from Jukie. He has taught me the importance of taking care of myself. If I didn’t, I fear I’d be swallowed up by all of his needs, completely consumed by his need for 24-hour supervision, patience and energetic mothering. If he were a “typical” kid, I’m not sure I would have understood this. But, he’s far from typical; I HAVE to reach for the lifesaver.

But what was the dream trying to tell me that I was missing? What’s the baggage that I’m supposed to leave behind? That’s easy: it’s guilt. Remember that in the dream I could not even GET to Italy with my baggage, let alone enjoy the trip. Most mothers experience some amount of “mom guilt.” I’d say that mothers of special kids take on more guilt than others. Our kids need a lot of intervention (therapies, medical visits, school accommodations) which requires huge amounts of time and Herculean patience and energy. Life so often feels overwhelmingly difficult. Naturally, we fear that we’re not doing enough to help our kids. We’re afraid that if we’re not enjoying our role on a particular day, we’re not good moms. Do you know what I think my wise little redhead would say if he could? “Get over it, Mommy.” For Jukie knows that Mommy is happier when Mommy has had some time for herself. And I know that in order to be the best mother I can be, I need to focus on myself in addition to my kids. Seems obvious, right? Then why do so few mothers carve out the time that they need? That mom guilt is a bitch.

I’ve learned to take care of myself in all sorts of fabulous and fun ways. Several times a week, I share a meal with a girlfriend. I see every good movie in the theater, and have season tickets to my favorite theatre company. I get pedicures because it feels like a wonderful small luxury. Most importantly, I give myself the gift of time. Whereas I used to feel I should do everything for/with Jukie, now I’m able to step back and let others help. Of course, I don’t completely have it down. I still feel that guilty twinge now and then. The dream surfaced to remind me that I’m not in Italy if my mind is elsewhere. It’s OK to put down that baggage and get on the plane.

Thank you, Jukie.

Now it’s time to book another flight!

Tuesday, October 27, 2009

Throwing Glass

“Was it clear glass?” The doctor removing the glass imbedded in my finger was explaining that clear glass is hard to see. I told her that it was clear, and that if she turned my finger the right way in the light, she’d see it shine through the hole it left behind. “Don’t mind her,” I said to the doctor, pointing with my non-maimed hand at my daughter Geneva who was taking pictures of the procedure. I explained that we like to document the crazy antics of my son Jukie. “It helps us to see the humor,” I said.

So what was it THIS time? Jukie’s newly acquired habit is throwing glass. Yep, GLASS. He prefers to throw drinking glasses, but in a pinch he’ll choose a ceramic tea party set of his brother’s or a picture frame. After he threw a cocktail glass to the ground in a Baltimore bar last month, he and his dad were asked to move next door to the adjoining restaurant. “He didn’t mean to,” the bartender said, clearly not believing what her eyes told her. (What moving to the restaurant was supposed to accomplish, I am not sure.)

Of course, he does mean it, for he loves the effect as his chosen projectile smashes to the slate floor, spraying glass everywhere like fireworks. While this new practice sounds like a hostile act, most often Jukie is happy and filled with silly “Jukieness” prior to the sneaky deed. He waits until whoever is designated with Jukie-duty diverts her attention for just a moment and then, with lightning speed, he makes his move. He’s so fast that it’s nearly impossible to stop him.

Like Kali, the Hindu goddess of eternal energy, Jukie loves destruction. Of course, he doesn’t see it that way; he has no thought of the consequences of most of his actions, such as my collecting glass shards with the dust broom, a wet paper towel, and my fingertips. To him, the delight seems to be more in the immediate cause and effect. And the effects of these effects have been rather expensive; sometimes we joke that we need a separate homeowner’s insurance policy just for Jukie. Over the years he has:

Torn many items off the walls
Ripped the handle and deadbolt off the front door
Pulled his curtain rod out of wall (leaving a large hole)
Yanked the toilet paper holder out of wall (leaving a small hole)
Chucked many items down the stairs (including Geneva’s violin)
Whipped things at the ceiling fan to watch them hit and fly in all directions
Broken multiple lamps
Flushed God-knows-what down the toilet – necessitating its replacement
Thrown various fragile items at the ceiling
Bitten Geneva on the stomach while dancing happily with her
And, of course, the recent classic: feeding 3 boxes of wipes into his fan (see photo below)

Of course it’s often maddening to be present during Jukie’s whimsical demolition, much less the recipient of it. But, I can also understand it. Jukie has little say in where he goes and what he does. He has to rely on us to interpret his thoughts through just the few words which he communicates through PECS, or mystically via our special psychic connections with him. So often it’s hard to be Jukie. I get his need to blow off a little steam, and evidently nothing livens up the house like a little shattered glass! And really, who wouldn’t love to throw some glasses at the floor now and then. As we finish yet another kitchen cleanup, we wonder what will last longer, our remaining glassware, or this new tradition of Jukie’s, one that makes him as happy as a new groom, crushed glass underfoot, and the joyful words “Mazel Tov” hanging in the air!

Wednesday, October 21, 2009

Jukie Antics

“You should write a book.” I hear this often. Everyone seems to think there’s a book to be written about life with Jukie. His antics are practically Davis legend. Jukie’s hijinks are both so maddening and entertaining that they’ve made for many a humorous party story. It’s that “laugh or you’ll cry” thing. Only, I don’t have to look hard to find the humor. Jukie’s pretty damn funny. I mean, who else but Jukie would get into a tug-o-war with a 90-year-old with her own cane?

The chaos started early. As soon as he was up and walking, he was pulling stunts like dunking his Nana’s camera into her coffee. Soon we discovered that he’d often announce his plans with a fiendish laugh. When the room is still and Jukie giggles to himself out of context… look out! And if he’s laughing maniacally as we tuck him into bed, we know it’s going to be a long night.

When he was three years old, Jukie dragged a chair across his nursery school classroom over to the fish tank. Then he grabbed a teapot from the housekeeping area and proceeded to climb up on the chair and scoop the fish out, pouring them all over the counter. When I arrived at school to pick him up, his teacher announced, “Jukie went fishing today!” (Thank God for those fabulous teachers over the years who love and “get” Jukie!) No water source is safe. Jukie. Loves. Water.
Water table set out for play? Jukie will sit in it. Water sitting in a glass on the table? Jukie will pour it all over the newspaper.

One of Jukie’s mottos is: why walk when I can run? As with all children with SLO, Jukie’s motor skills were delayed. Unlike most of his SLO buds, Jukie learned to walk at 17 months and learned to RUN almost immediately thereafter. When I say run, I do mean RUN. He runs everywhere. And he’s fast. His psychiatrist (at KKI/Johns Hopkins, and an SLO expert) says that Jukie is the most hyperactive child she has ever met. Ever. Jukie has scaled our six-foot fence and run a mile away from home (sans shoes or shirt). After a 911 call and frantic search, he was located at a favorite park, playing quite happily in the sand. Only Jukie could manage to run headlong into a blind man and steal his cane (see the IKEA story -- clearly, Jukie has a thing for canes). Perhaps because he’s so small for his age, Jukie continually surprises others with his speed. At Costco once, Jukie sat in the shopping cart watching the employee ring up our purchases. As soon as the cash drawer opened, Jukie reached down, grabbed all of the pennies and chucked them up in the air as hard as he could so that they rained down upon our heads. Even if I had known what he was planning, I’d have struggled to stop him with his lightening quick speed. He’s also got excellent evasive moves. You’d think that he, rather than his sister, had been studying Tae Kwon Do for years when you watch him expertly escape my grip on his wrist and flee – all in one swift move. There are many times when I’m no match for my crafty running boy.

Jukie could climb before he could walk; climbing is his thing. Like a cat, he prefers to perch up high. When he was born, his droopy eyelids (known as ptosis) prevented him from seeing much of the world. It was as if he were always wearing a hat with a brim down low over his eyebrows. Climbing enabled Jukie to see the world. Jukie is resourceful and figured that out early. So we let him. We provide as many high spaces as we can for our boy to get his climbing fix. But, he had one more space in mind. A few months back, we heard a knock at our door. Who could it be at
11:30 PM? Of course, it was our neighbor, out walking his dog, who noticed Jukie climbing around on our roof. Our ROOF. Jukie had managed to open his window, rip off his screen, and climb out and onto the roof. There may not be an accomplishment for which Jukie feels more pride. He knew exactly what he wanted to do, and figured out a way to do it. That time he ran away, I had previously told him that we were not going to the park (as he had requested through PECS). So, he climbed the fence and took himself. The most successful explorers have always had more bravery and curiosity than sense. Jukie is our little Magellan.

Thursday, October 1, 2009

Welcome to Holland

Welcome to Holland. A little over twenty years ago, a woman named Emily Perl Kingsley wrote a short essay with that title. The piece became an unofficial rallying cry for parents raising kids with special needs. In it, she likens preparing for the arrival of a new baby to planning for a fabulous trip to Italy. Then, instead of landing in Italy, the reader finds herself in Holland. Holland, obviously not the planned destination, takes some adjustment. In the end, one discovers the beauty of Holland. No, it’s not Italy. But, Kingsley argues that if we spend our lives mourning the mixed up itinerary, we will miss the beauty of the journey that we did take.

Thing is, sometimes, Holland sucks. This week, I was moved by an exchange between two women on Facebook, each raising kids with special needs. One had posted the Kingsley essay. The other woman was in a different “place.” She’s (rightfully) angry about her son’s struggles. She must fight the bureaucracies of school, county and state agencies which determine the services her son will receive. Stacks of paperwork, painful assessments, unreturned phone calls, insurance denials, and an endless stream of interactions with people who seemingly lack an “empathy gene” are all part of this journey. This mom is not experiencing a vacation anywhere. She’s living in the real world with an extremely challenging child who has multiple diagnoses and struggles. Just surviving the day is an accomplishment, sometimes the only goal.

I identified with both of these women. Of course, any parent living with a child with special needs knows that the complexity of our lives can’t be reduced to a simple Holland versus Italy idea. No one feels completely sanguine about their life in Holland. Certainly, I have days when I want to scream about how much I’m hating Holland. Still, I do think that the analogy is helpful for people on the outside, offering a different perspective. One hopes that parents living in Italy might catch a glimpse at our world, a life of beauty and magic, not in need of pity. Early on, Kingsley helped me consider that there might be brilliant surprises in this world, yet to unfold.

So, when both realities are true, how do we reconcile the two positions? Maybe you don’t. Maybe you just travel back and forth and hope that as time passes, you are able to spend more time admiring the tulips and windmills of Holland than wishing you were cruising the streets of Italy on a Vespa. Or, in my case, you buy a Vespa and ride it all over Holland!

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!