Friday, January 23, 2004

My First Friday Five!

Shout out to Gwen for turning me on to this wonderful new source of filler for my blog!

And a special message to Michelle - see, here is a nice innocuous entry for your blog that people will not be compelled to comment upon.

Now here goes:

At this moment, what is your favorite...

I have loved “A Case of You” since I heard it performed live by Diana Krall on a warm, starry summer night at the Concord Pavillion (sorry, I STILL refuse to call it the Chronicle Pavillion) as I snuggled under a blanket on the grass with Chef and Baby Bug. That led me to seek out the original Joni Mitchell version, which led me to discover one of the most gorgeous, intimate and moving CD’s I have ever heard.

2. As my coworkers pointed out at lunch, I have spent the last week raving about the Pancit Palabok I enjoyed at the new Goldilocks Bakery last weekend. Their menu describes it as “White fine noodles topped with Palabok sauce and Sauteed pork, Vegetables, Spices, and garnished with Green onions, Boiled eggs, Flakes of smoked fish (tinapa), and Ground chicharon (fried pork rind).” It reads like a strange and random combination of ingredients (and most decidedly non-Kosher!) but it was rich and savory and highly addictive! Next time I will order more, as Baby Bee grabbed handfuls off my plate and slurped them up as fast as her little mouth could swallow them.

3. show? With two young kids in the house, my viewing is primarily limited to stimulating programs like Barney, Sesame Street, and, god help me, Oobi – starring a Senor Wences-like hand puppet. Sadly, I now find myself becoming intimately involved in the characters and plotlines of these shows, and am waiting eagerly for the new season of Sesame to premier in April. I understand the 35th season will kick off with a prime time special, I am just sorry to learn that it will take the form of an extended “Elmo’s World” format, oy.

4. ...scent? Oh, I wish I could bottle up Baby Bee’s sweet little milk-breath, which I can’t get enough of. That, and the smell of brownies baking. Oh, and chocolate cookies. And hot apple pie. Mmmmm, and fresh gingerbread – and how can I forget the heady aroma of just-brewed coffee? And . . . what was the question again?

5. ...quote? I had this boyfriend once who had the most annoying habit of constantly quoting things, mainly whole pages of dialogue from Wayne’s World, This Is Spinal Tap, and various Monty Python flicks. He not only ruined those movies for me, he actually ruined the whole concept of quoting!

Damn you, annoying ex-boyfriend!

Wednesday, January 21, 2004

The View From Holland

I think every parent of a special needs child asks themselves the same question from time to time. If there were a magic pill that could make my child's condition disappear, would I jump at the chance? It is, of course, a completely academic question - and a loaded one at that. We'd all like to believe that we accept our children exactly the way they are, yet who in their right mind would *not* want to remove any possible obstacles to their success and independence?

Having a son with Down Syndrome has opened my eyes to the thousands of small gifts most people take for granted, like hearing his perfect little heart beat, seeing him run and climb, and listening to his vocabulary grow every day. Moreover, I have connected with moms all over the globe and have found common threads with people I ordinarily would not encounter in my narrow little world of liberal California Jews. All we have in common is a child with “enhanced chromosomes,” as we like to put it, and the essential conviction that our children’s disabilities are, in reality, a blessing for those who choose to see it.

I do believe this most of the time, as I watch Bug happily chase after ducks in the park or wave a friendly “bye-bye” to the moon. Other times, well – let’s just say it’s not always hearts and flowers and gentle little angels sent from above. My spirit soars when Bug gets off the school bus, throws his arms around me and says “HAPPY SEE YOU!!!”, but it breaks my heart that he simply does not have the ability to tell me how his day was or what he did in class. I love watching him melt hearts as he dances with joyful unselfconsciousness during synagogue services, but minutes later I am red-faced with embarrassment as I frantically try to keep him from running with glee into the street outside. I try to tell myself that he is hardly the only 4 year old who acts up sometimes, but the hard truth is that a typical child his age can understand and comprehend the danger of running into the streets in a way that Bug does not.

Things are both easier and harder now that he is older. In the beginning I purposely kept myself in constant denial about his delays, only to be smacked in the face with reality every time we went out and saw kids half his age running around, talking, picking Cheerios daintily out of a cup – while he was still struggling to sit up straight and hold his own bottle. After four years I am able to truthfully rejoice in his many accomplishments and no longer make the mistake of comparing him to others. Still, I cannot deny that I see the gap widening between Bug and his peers and it makes me ache for him. The kids he has played with all of his life, through thousands of games of peek-a-boo and pretend tea parties, now want to play Go Fish and checkers while he only wants to fling the cards and game pieces around the room. The summer camp and Sunday School programs he has enjoyed may be out of reach for him soon, as the activities grow more sophisticated and the expectations higher.

Every mother wants her child to be well-behaved, to impress others with their charming personality and perfect manners, their intelligence and cleverness. Because Bug IS Down Syndrome to many people in our community, I feel tremendous pressure on us to "represent" it in a positive way. I cringe when he misbehaves in public for fear that he will reinforce people's stereotypes about kids with Downs being wild and uncontrollable, not someone they’d want mixing with their kids in a public school classroom. I hate that people look at me with pity or relief that they are not in the same boat. I guess if I DID have a magic pill I would use it on everyone else - to open their eyes to the beauty and diversity of all people, and to the inherent value of people like Bug. I wouldn’t use it on my son, because he is perfect the way he is.

Monday, January 12, 2004

To Whom It May Concern

Dear Mrs. Guitar,

Bug's favorite part of Sunday School happens at 10:00 AM, when you show up for a 20-minute music class. He is fascinated by your smooth, polished instrument with the shiny strings and colorful strap, and he loves to sing and dance to the upbeat Hebrew melodies.

Yesterday you began your lesson with a simple introductory song, asking each child his or her name, then singing "How are you ________, B'vakesha?", to which the kids were to respond "Fine thank you, todah rabah!" In a class full of 3 and 4 year olds, this was only moderately successful - many of the kids were too shy to say their names, or didn't understand how they were supposed to respond. I was impressed with the way you muddled through, prompting and hinting and finally, singing the lines yourself.

Except in the case of Bug. As you went around the room, it became increasingly clear that you were studiously avoiding calling on him, although he was sitting right next to you. You went through all sorts of permutations - switching randomly from clockwise to counterclockwise, calling to the few stray kids playing with Legos in the back of the room, even including the teenage helpers in the class - everyone but the quiet little boy to your left, waiting eagerly for his turn. My face grew hot with rage as I began to realize what was going on. How DARE you treat my son as someone to be ignored, to pass him over as though he doesn't exist?

I tried to calm myself down, to give you the benefit of the doubt. Chances are, you were simply unsure if Bug would be able to give his name, or to sing the required line in response. Since I was not sitting right next to him, maybe you didn't know that I was his mom and could easily answer for him if needed, just like many of the other students were helped along by their parents or the teacher. And in fact, the moment I went over and sat him in my lap, you immediately asked me his name and sang the next verse to him without missing a beat. So why am I still stewing about the incident over 24 hours later?

I find it troubling that you chose not to give Bug the benefit of the doubt. Hardly ANY of the kids were able to follow your directions perfectly, but at least they were given a chance to try. As it so happens, he is perfectly capable of identifying himself (and his sister, and his teacher, and his friends) by name when asked. But you wouldn't know that, because you just assumed he couldn't.

And even if that were so, couldn't you just *wing it* a little, Mrs. Guitar? Just off the top of my head, I can think of several better ways to handle the situation. If Bug couldn't tell you himself, maybe you could have asked "Can anyone tell me what our friend's name is?" And on the off chance that none of the other kids, teachers, aides or parents could identify this person who has been in their class ALL YEAR, you still could easily have continued your song, maybe substituting the Hebrew word for "friend" or "student" or "little boy" instead of his name. Let's face it, anyone with an ounce of creativity - especially someone with your supposed background in education and experience working with kids - should have found a way to include Bug instead of pretending he didn't exist.

Mrs. Guitar, you seem like a nice woman. I have encountered you many times, at Tot Shabbat, at the Hanukkah family celebration, and at the wonderful Sukkot sing-along under the stars last summer. You have always been perfectly pleasant to me and my kids. I don't believe you are an evil person who wishes to actively discriminate against kids with Down Syndrome. I *do* think that Bug is someone who takes you out of your comfort zone. You are not sure how to act around kids like him, so you opt not to acknowledge him at all.

Well guess what, Mrs. Guitar? Bug isn't going anywhere, so you damn well better get used to seeing him around, and you WILL find a way to work with him and include him - especially if the rumors are true that you are angling for the Educational Director job after Rabbi Girl leaves in May. And don't worry - I will make sure that Bug stays very visible on your radar screen, showing up to every kid's service and holiday party until you are forced to get to know him as a person, not just a scary disability that you are afraid to confront. And someday . . . you may even learn his name.


Aimless the Mama Bear

Monday, January 05, 2004

Right Back Where I Started From

In my early twenties I lived a happy, carefree existence among the redwoods in Humboldt County. I wore long hair and faded blue jeans, showed up to work when I wanted, and spent my weekends lazing at the river or curled up in a corner of the rambling used bookstore. Each time I made the long trip back to visit my parents, I passed the squat concrete buildings and chain stores and endless parking lots and said a silent prayer of thanks that I had managed to escape the confines of suburbia, never to return.

A decade later, here I am. I work in a sprawling office park, shop at Target and own a home mere blocks from my parents. Most surprisingly of all, I love it here - I love running into the yentas from synagogue at Whole Foods, and reminiscing like an old geezer about the glory days of Affaggatso's Pizza and Lippert's Ice Cream and the old ice skating rink at the mall. Mostly, I love the random memories that are evoked during the normal course of my day. Passing the curvy sidewalk by Applebee's reminds me of bike rides with my friend Martina to the orthopedic shoe store her parents owned in Burton Village (now an upscale shopping center), and every September I remember the thrill of my first date at age twelve, a trip to the annual Walnut Festival with Brett Sanders from French class. Twenty years' distance has allowed me to conveniently forget that my friendship with Martina devolved into an ugly and depressing feud (over what, I have no idea) or that I have never completely recovered from the humiliation of waiting eagerly for Brett at the big Thanksgiving dance, only to learn that he was busy making out with Tina Buschiazzo in the band rehearsal room.

Sadly, my good memories of growing up here are few and far between. I was an outsider from the moment I transferred from an ethnically diverse, rough-and-tumble elementary school in San Francisco to lily-white Castle Rock, filled with perfectly groomed, savvy suburban kids. The people here joined swim clubs and soccer teams at birth, and the girls feathered their hair and wore Alligator shirts and tight jeans with tubes of Bonne Belle lip smackers stashed in the back pocket. I was a misfit with no athletic ability, a thick pair of glasses, and clothes ordered straight from the Sears catalog. I wanted desperately to belong, to be confident and popular like the girls I envied, but it was hopeless from the start. Bookish, shy and awkward, I spent most of my school years gazing wistfully at the inner circle from afar.

Returning to the scene as an adult was hard at first, especially the way Chef and I started out - jobless and broke and living on my parents' futon while we tried to scramble together a new life for ourselves. Early on, we went to a gathering at the home of an old aquaintance of mine, hoping to jump-start our social life by making some new friends. The party guests were perched on stiff oak chairs around a formal coffee table, earnestly discussing 401ks and stock options. Their conversation was continuously punctuated by the bleeps and buzzes of cell phones and pagers. It was a far cry from the mellow backyard bonfires we were used to, where people drank homebrewed beer and sang along to Van Morrison tunes on someone's acoustic guitar. Once again I began to despair of ever fitting into this place where I always seemed to be so different and out of step with others.

There were certainly a lot of frustating times and false starts, jobs that didn't work out and friendships that fizzled, and the baggage I carried from my past made it that much harder for us to make a fresh go of it. But somehow it happened - our careers slowly got underway, we made a few friends, and then some more, and here we are now with jobs and a house and kids and and family and friends and a solid life that we created together. And the fact that it happened here, the last place I ever thought I could succeed, is a personal victory.

My little demons from the past do crop up from time to time. Just last week I stammered painfully through a simple conversation with the rabbi's oldest daughter about various brands of diaper rash ointment. Why? Because although we are both in our mid-thirties, I still feel inherently unworthy to speak to the woman who was once the immensely popular captain of the cheerleading squad in high school.

I've realized by now that I'll always be an anomoly in this town - I don't scrapbook or manicure my nails, I have never joined a gym, I would rather search for treasures in a musty old thrift store than shop at Nordstroms. In many ways I am as different and out of step as I was in junior high school. But I have made a place for myself here, and this will always be where I belong.

Saturday, January 03, 2004

Happy Birthday Baby Bee

I was bone-tired, sore, and woozy with Vicodin, but I have never experienced a more pure joy than I did the night Bee was born. All my visitors had gone, including my husband - after I reassured him I would *not* be offended if he chose to sleep in a comfortable bed at home rather than squeeze his six foot five body into the hospital's dinky easy chair. The lights were turned off except for one glaring yellow bulb over the sink, and Miles Davis "Birth of the Cool" was playing on the boom box that Becca left for me. In my sleepy, dreamy haze I drifted along with the be-bopping harmonies of "Venus de Milo" and looked into the wide dark eyes of my perfect, beautiful baby girl.

Three years earlier, in that same hospital room, I endured a tearful, sleepless night after hearing the on-duty nurse casually call my newborn Bug a "Downsie baby." "A WHAT?" I demanded. "Oh - um, nobody's talked to you about this yet? Jeez . . . well, sorry. You better talk to the doctor tomorrow." Though my husband was snoring soundly in the chair next to me, I felt as scared and alone as I ever had in my life.

This time around, I made a stronger effort to maintain a sense of control of my pregnancy and labor. I had an amnio in my 24th week to avoid any delivery-room shockers. I took months of intensive prenatal yoga hoping it would give me the tools to have a natural, drug-free childbirth. When I was in labor with Bug, I was so frustrated at being unable to push because I was too numbed by the epidural. My inability to participate in that basic function of birth seemed to foreshadow all the other things that went wrong - his failure to nurse, the bombshell of his diagnosis, the heart defect that was soon discovered. Just as quickly, things started to look up - he finally caught on and breastfed exclusively for over a year, the small hole in his heart closed on its own, and we fell madly in love with our sweet, solemn blue-eyed baby who was perfect just as he was. But the searing, painful memories of his birth day will always remain fresh.

Bee's birth didn't exactly go as planned either. I came prepared with the traditional, soothing birthing imagery of ocean waves and island breezes, but all I could see when I closed my eyes were the endlessly shifting stacks of cards from the Spider Solitaire game I nervously played for hours the night before. I was wracked with contractions that came one right after the other and lasted for three and four minutes at a time, causing me to writhe helplessly on the bed, kick off my fetal monitor, and rip at my flimsy hospital gown. The pitocin-induced labor was so powerful that Bee arrived hours earlier than predicted, forcing my doctor to make a mad dash through three blocks of traffic, running through two red lights to be there for the delivery.

Despite my last-minute, frantic protests to the contrary, I was in fact able to get through the process without an epidural. I loved being able to push and feel the baby's head and shoulders moving forward, and I felt a tremendous sense of relief when she successfully nursed within minutes of being born. I cooed over her surprising shock of dark curly hair and her tiny, chubby feet.

But the real euphoria did not set into until that night. Alone with baby Bee, all lovingly washed and swaddled in fresh blankets, I held her in my arms and stroked her soft sleepy face and fell in love with my miraculous new creation.