Life Goes On

Ob-la-di, ob-la-da,
Life goes on, brah
La la how the life goes on
Ob-la-di, ob-la-da
Life goes on, brah
La la how the life goes on

-- "Ob-La-Di, Ob-La-Da" (The Beatles)

We had yet another dentist appointment yesterday. I have been there so often that I feel like I should at least have my own coffee cup in the employee lounge. When we were first scheduled for what they call "fun visits" months ago, I was a complete skeptic. It seemed that for months Erik's anxiety about the dentist was only intensifying. Smack dab in the middle of the process, the wall of gleaming teeth that was Dr. Mike retired and was replaced by a comely 12-year-old named Dr. Brent, which only served to sour my attitude further. In the end, though, the efforts that originally seemed futile have actually worked wonders. Color me surprised.

Yesterday after Erik and Stinky-Dog rode the orange examination chair like a lame mechanical bull, Erik was allowed to play with the suction tube, which he considers one of his beloved vacuums. He ran it over Stinky-Dog's scruffy face and flaccid body, and the stuffed animal chuckled and begged Erik to stop in his throaty, pack-a-day grumble. By the time Dr. Brent joined us in the room, Erik easily opened his mouth wide for the first time and demonstrated that his teeth were completely free of cavities. I was informed that our brushing techniques were obviously much more effective than the ones typical children used on their own teeth (I allowed myself to feel a little smug, as this feeling is rare and quite precious). Erik even allowed a nasty-tasting fluoride solution to be swabbed over his teeth with a brush and successfully vacuumed out the excess on his own with the suction tube for the very first time, seeming to enjoy the juicy sound of it. He was rewarded with two balloons and a brief session of stimming/spinning on the wheels of the toys in the waiting room, where I discovered a Ms. Pac Man machine. Score.

This summer has been one of change. I have made some difficult decisions regarding my personal life and am striving to be a better friend, daughter, sister, aunt, mother, and wife. I desire to feel more connected with the outside world again and have sought help to sort things out. I was amazed at how intensely the emotions I felt a few years ago easily bubbled to the surface like new when I described my experiences out loud. Today I meet a part of my father's biological family that my parents recently discovered through their research over the years. From what I have heard, they are amazing. Ironically, I lost my grandmother last week, who was a very large part of my childhood. Our relationship over the past few years has been difficult, but her love for Erik seemed to smooth things over and brought us together one last time, which happened to be the day before she passed away. I have come to believe that one of Erik's jobs here on earth is to bridge the sometimes incredibly profound gaps between the people around him, and he is an absolute expert at it, even at the ripe old age of 4.

Today we attend our last IFSP (IEPs begin next year). We are hoping to say goodbye to diapers this year and are excited to witness more of the progress he has shown us every year.

Dandy One

(My father helping Erik blow bubbles. Erik calls the large bubbles "dandy ones.")

I had a good day today. I don't seem to have many these days. It was rather lovely.

Despite the heat, autumn is in the air. There is the scent of earth and ailing foliage baking in the hot sun. This warm mixture of death and life fills my nostrils. I roll down the windows in my vehicle and let all of it into my lungs. I drive past my old schools, one of which has recently been razed to make way for a new one, and feel more than a little nostalgic. Last week I drove past the ancient brick building that housed my fourth grade physical education class and had flashbacks of running laps over the glossy wooden floor. My gym instructor sometimes wore paint on her face that make her look like a rather fetching version of Gene Simmons. If the boys didn't behave, she would kiss them and leave black and white smudges on their cheeks. These days that kind of stunt would trigger a multimillion dollar lawsuit. Now that I think about it, she was probably the last gym teacher I had that was remotely interested in kissing boys, anyway.

Not that there is anything wrong with that.

Erik continues to do well off dairy. He refuses to consume soy milk but will eat soy yogurt and cheese. His bowel issues have almost completely resolved. He has discovered the joy of asking more complex questions. He has queried, "Are you ready to go now?" and "Do you watch Elmo?" He seems to be realizing that these kinds of questions start conversations much more effectively than random words (Boppa! Monster trucks! Wheels!) or rumbling engine sounds, which previously made strangers squint in confusion and look to me for translation. He still tells jokes that make sense only to him, and he laughs hysterically at them. He is amazing. His motor skills are still horrendous, and he doesn't show signs of substantial improvement in this area, but he gets around quite well if he is not distracted. Once he is outside in a bustling environment, he tends to stumble and fall more. Amazingly, it looks like soccer comes naturally to him. While he can dart about kicking a ball, he seems quite annoyed when the concept of passing it back and forth is suggested.

He has finally mastered the stairs in our house. I will never forget his therapist walking him up and down our stairs over and over. His legs just didn't seem to work the way they should, and I dreaded this exercise because it seemed hopeless to me. When her Subaru used to pull out of the driveway, I would burst into tears. I still remember this well and detest our stairs, although Erik now races up and down them at light speed, sometimes not even bothering to use the handrail. He has only fallen once.

I got his little plastic blocks out the other day, bracing myself for yet another disappointment, and he actually stacked the dang things for the first time. He was shaky, but he did it and seemed annoyed when I tried to help, which I was pleased to see. He obsesses less about wheels and more about sprinklers, talking about sprinklers and sprinkler-related paraphernalia each time we leave the house or drive past a park. He wants to go next door to see the neighbors' sprinklers and asks me over and over if they will be on, sometimes as soon as he opens his eyes in the morning. The last time we went to a playground, he was merely interested in playing with the drinking fountain, using the slide and equipment only to humor me.

Erik's echocardiogram is scheduled for the 18th of November. There is no way we will be able to get him to lie still for the study, so sedation will likely be necessary. I will be fine after the study but will feel intermittently nauseated for weeks until that date comes and goes. If all goes well, we only have one more year of annual heart checks. Hallelujah.

Tonight we just finished my father's birthday dinner, and the house smells like meatloaf and potatoes. I stuck a candle into the glistening crust of a freshly-baked apple pie my mother made, and we sang "Happy Birthday." Erik sang the loudest. He loves birthdays. If you ever want him to sing to you on yours, just give me a call, and I'll put him on for you.

All in all, it was a very good day.

Bubbles

Brian set up my first brand new washing machine yesterday. It even has a rubbery new car smell to it. There is a glass porthole in the front, and Erik sat cross-legged on the floor before it to observe the first load of jeans we placed inside whirl around. He loudly reported whether the drum was spinning slowly or quickly. I suspect it will provide hours of entertainment for us both on rainy days. I was disappointed to discover it doesn't feature cup holders or a snack tray of any sort.

Erik's grandparents arrived yesterday from out of town, and he pulled out all the stops showing off for them. He did somersaults. He sang "Jingle Bells" in its entirety when the song was briefly mentioned in a casual conversation, even though it has been months since he heard the words. For the grand finale, he actually added onto our dinnertime prayer, thanking God for his grandmother and grandfather. He has never done this before. I only wish I had a photo of our faces during moments like these. Brian and I always cease what we are doing and slowly and cautiously glance over at each other to confirm whether or not we are hallucinating.

Priceless.

I drove to Erik's school Friday to sign paperwork. He will attend school twice a week from 9:15 to 11:45 in the morning starting in two weeks. He will ride the little school bus home again, as he seemed to enjoy that last year and it saved me another trip across town. This will be his second year of preschool, and many of the children he attended with last year are enrolled with him again. I guess it's time to start shopping for a kindergarten now. His IEP next year will be the beginning of the real deal. For now, I have one more year of comfort hidden inside the familiar, thick-walled bubble of special education. I can't begin to imagine what it will feel like to immerse him in a class of largely typical peers. We are both not close to being ready for that yet, and I suspect that will be very difficult, at least for me, at first. Then again, being thrust into the early intervention program was probably the most difficult thing I have ever experienced. I feel like a veteran in the building now and am now completely comfortable there. Friday I was introduced to his new speech therapist in the hallway, and when Erik's diagnosis was revealed to her by Erik's teacher, she nodded and seemed familiar with it. I could feel my eyes squint slightly as my skepticism kicked in and I scrutinized her young, fresh face, but she then asked me if Erik was taking music lessons yet, reassuring me she wasn't crammed full of baloney after all. Most professionals here who claim to know about WS are. Especially physicians (although they are full of something much more odoriferous). As it turns out, this woman worked at a special school in Massachusetts with children who had Williams. Needless to say, I almost fell over.

Unfortunately, sleep is in short supply this morning. I didn't even make it until 2 a.m. Hopefully, the rest of the world will wake up soon and join me. For now, I watch the sun come up over the desert and fantasize about devouring a Belgian waffle topped with strawberries and whipped cream.

Sermons and Serpents

I left our bathroom window open last night to cool the house down as we slept. Well, that was the theory, anyway. I don't sleep well with open windows. In addition, for some reason, the birds sang a sweet, happy song starting at about midnight last night. They sang for hours off and on, making me jolt awake and conclude that it was a decent hour to get out of bed. They were probably wasted on sunbaked berries. Feathery drunkards.

The happy result of my insomnia, though, was the gift of extra time this morning before we left for church. Erik and I dressed up a little. I suggested to Brian that we make an outing out of taking our bottles and cans to the supermarket after the service. We loaded them up, reaching into the box we store them in and putting what was overflowing the top into the depths of a black garbage bag, stashing the whole collection in the back of my vehicle behind Erik's seat. Then we were off.

After a successful morning at church, we strapped our happy son into the Jeep with his Dixie cup of cookies and homemade banana bread from the children's snack table on the way out the door. We then drove the short distance to the store. I went inside with Erik to locate soy ice cream for Gracie-Cat, as the yogurt I have been hiding her thyroid medicine in is apparently making her fur fall out in clumps, leaving behind bloody scabs. On our way out the door, we located Brian feeding aluminum cans into the boxy machines that crush them down and spit out paper receipts. I parked my cart where Erik could watch us work, and I got busy reaching into the basket of the shopping cart where Brian had dumped our bottles and cans. I began to help him stuff the machines, trying to breathe through my mouth as to not inhale the scent of hot, fermented beer. When I finally glanced down to see how many cans were left, I saw a length of what I thought was a bungee cord draped over the pile of metal and glass. After further investigation, I realized that I was not staring at a bungee cord at all.

I hate looking weak, especially in front of my husband. I especially hate screaming like a little girl. Instead, I quickly scanned the stripes on the thing and identified it as the booty of a healthy-looking garter snake. I immediately ceased plunging my forearm into the wire basket and heard my voice go up a few octaves to reach the frequency reserved only for emergencies.

"Honey? What's that?" I pointed to where it rested.

Brian looked surprised and amused, and we both laughed. The creature raised its head up and glided over the cans, looking for a way out of the unwanted madness. It decided not to drop down onto the foreign surface below the cart, at least at first, and retreated to a corner of the cart. Brian suggested sticking to the top layer of cans, and we picked around it. Finally, its head stuck out a hole in the bottom of the cart. It gingerly dropped down onto the concrete and quickly slithered under my can counting machine. We finished the job while I watched my toes. I had a pretty serious case of the freakies.

Brian said, "That's going to scare the crap out of somebody later."

We both laughed again.

We discussed how extremely thankful we were that the snake, who had likely traveled around the corner from the sun-scorched rocks along our walkway into the shaded box by the open garage door, had stayed in place and not escaped during church. However, it was in my Jeep the entire time. I am not deathly afraid of snakes, but I would prefer not to touch them, especially when I am rocketing down the highway in my vehicle. Oh, sure, this one was completely harmless. That is, it would be until the moment it came over my shoulder to rest on my lap or lazily wrapped around my calf, after which I would careen off the side of the road into a power pole, plunging the city into darkness, or, worse yet, through the plate glass windows of a crowded Denny's.

I consider that very dangerous indeed!

Lift

Today I dropped Erik off at school. I find the whole process gets easier each week. However, he is still so distracted around the other children and their noise that he doesn't seem to hear simple instructions. Today I thought the teacher and I were going to go hoarse asking him to hang up his jacket and backpack in his locker. He can unzip his coat halfway with a zipper pull and then shrug it off after some assistance, and I help him hang it on a little hook. He still seems completely unable to really see the connection between the hook and his coat. Perhaps he thinks the whole thing is pointless. Who knows. I just believe that he still doesn't really see things like other kids do. I left him with a teacher and headed to the nearby salon for a haircut.

I have been going to the same hairdresser since I was a teenager. During this time, she has worked in three salons, and I have followed her. We both went through the big hair phase together, and I came home from college periodically to have my hair permed into a glorious mane held in place by half a bottle of Aqua Net hairspray. Over the years she has listened to my stories of high school graduation, college, dropping out of college, going back to college, buying my first houses, marrying, having a baby, and dealing with Erik's diagnosis. She doesn't miss anything going on in my life, as she also cuts the hair of my best friend and my business partner. I feel strange when she asks me what I'm up to, because most of it now is related to my child. I often find myself answering questions about WS. While I would absolutely love to talk about something else for a change, I'm really excited about Erik and end up yammering for an hour about him. The salon experience isn't as relaxing as it used to be, but I still inevitably make her laugh until she snorts, and she always hugs me tightly on the way out. Today she told me I looked great (SKINNY, even!) and that it seemed to her that I have "figured everything out." Wow. I'm not sure about everything, but I suppose I have achieved a pretty good balance between my life as a mother and just being ME these days. That's a pretty big compliment. I walked out with a sassy new hairstyle and a giant smile on my face.

The school bus came to a stop in my driveway a little while after I made it home, and I climbed the chunky steps until I could see over the high backs of the chairs. Erik was strapped in, smiling and talking to himself. When Jeff, the bus driver, unlatched him, Erik headed to the back of the bus, almost rock-steady in his new orthotics, enjoying having the space all to himself, running his fingers over the floor to feel its grooves. Jeff asked if I was in a hurry, and I told him I wasn't. He instructed me to hang onto Erik and made his way down the steps outside to the wheelchair lift in the back of the bus. He opened the door and demonstrated how the metal platform, which seemed to have the consistency of a cheese grater, went from the bus to the ground. The mechanism was surprisingly quiet. After Erik struggled a bit with his anxiety, he let me hold him, and we crawled out onto the platform. I kneeled on the razor-sharp grate with Erik on my lap, and Jeff activated the machinery. We rode up and down at least twice as the wind and rain began whipping around us. We finally stepped off the bus and said our goodbyes. We waved and watched Jeff drive away.

Erik will be going to his aunt and uncle's house in Idaho for a portion of spring break starting next week. This is a big step for us all, but Brian and I decided that it would be good for all of us. It will be my second time away from Erik for a few days. We will meet Brian's brother halfway in the middle of BFE and make the drop. There is so little between our houses in our two respective states that the first time we made the drive, Erik looked across the dusty desert hills and said, "Ocean!"

I have always been big on the concept of "Team Erik." Erik has a team of friends and family that will be there for him no matter what, and his aunts, uncles, and cousins are a big part of that team. The bigger the team, the more relaxed I am, and I consider myself very lucky to be able to place my trust in such a dear group of friends and family that love Erik as if he were their own son.

Wunnerful Wunnerful

Random Thought of the Day: I think anything by Mannheim Steamroller is hopelessly silly (unless there is some sort of cool laser light show involved).

I sang with Erik this week during our daily cuddle time on the couch after his nap, and when we finished a song, he said, "Wonderful." It was very Lawrence Welk (without the accent).

I'm considering having the fasteners on Erik's leg braces redone. The Velcro is not sticking well anymore. At this point, I can't imagine he will be out of them anytime soon. If we leave them off for even one day, he goes right back up on his toes. I usually leave him out of them at home and let him run unfettered, but when we are out in public and he is unsteady, they work wonders, as he falls less. His left toe continues to swing in, especially when he is out and about.

Erik has an appointment with Dr. Mike, my favorite dentist, today. Brian took him last time while I attended a parent meeting, and he said it was brutal but quick. We are going in every six months, and so far he has not needed the lacquer to protect his teeth. I don't plan on having work today, and we will go to my folks' house afterwards, where I will enjoy a glass of wine and try to relax.

My holiday menu planning is complete, and I am looking forward to having everyone here this year, especially my little brother and his wife. I am baking a turkey, and my mother is bringing over a ham. Brian has twinkling white lights up on the house.

A WS family from out of town e-mailed me and told me they will be here to celebrate the New Year. They invited us over to the house they rented at a nearby resort for a play date. I have said it before, and I'll say it again. There is just nothing quite like being around another family wearing our shoes. I can relax and actually think about WS less. What consumes me a lot of the time simply loses its power. When I'm with another WS family, I am able to feel like a NORMAL mother, and I don't worry about what anybody else is thinking about me or my kid. I savor every moment of it.

I am missing the other families I know and hope to see them more and create more memories in 2008!

An Afternoon at the Mew-See-Um

Erik easily tames a wild beaver.



Andy, Sammy, Erik, and Brian.



I finally have a recent photo of the three of us together.

City and Country

I'm back from a very full day, yet I'm actually fairly relaxed. This morning I picked up Kathy fairly early, and we headed downtown to participate our community's annual 5K walk/run to support the fight against breast cancer. We were two of 2700 people there. The crowded event was beautifully coordinated and, except for some serious technical difficulties with the announcers' microphones, everything seemed to go very smoothly. Before the race began, we were instructed to kneel down on the ground to allow all cancer survivors in our midst to stand and be visible. Pretty powerful stuff.

As an air horn blasted and we began the race, we slowly lurched forward like a pink sea of zombies. There were many tennis shoes sporting fresh coats of pale pink spray paint on the feet around us. One group of ladies carried signs that proclaimed, "Save the Ta-Tas!" There were women in marabou and sequins and men wearing photos of their wives and mothers around us. The sunshine beat down on our skin right away, surprisingly hot for any sort of morning light, and we walked through the beautiful west side of town through tidy, ancient craftsman-style homes, sparkling office buildings overlooking the river, and clusters of cheery California poppies. Over the course of the race, we managed to fight our way to the front of the walkers and made decent time for not being in any real hurry. After our glorious finish and a quick drink of water from paper cups, I dropped Kathy off and headed home for a quick shower before I gathered my own family and met her yet again up at her family's campsite on the lake.

The lake was, as usual, gorgeous. The meandering streams I remember from my childhood were swollen, full of water that was quite recently snow. We set up chairs in front of their camp trailer, and Brian chased Erik around, who played in some very tiny snowbanks that shriveled under the sun before our eyes and manufactured dark mud puddles the other kids found irresistible. Alan barbecued hot dogs for lunch, and we enjoyed some quality time just hanging out with our friends and their family. We played with fat little frogs hopping over the marshy ground. Erik took a low-speed spin with Alan on the little orange motorcycle and got a ride in the paddleboat before he had sunscreen and sweat in his eyes and decided he needed some sleep. We loaded Erik's Tonka and our chairs back into the Jeep and drove back to town, where I enjoyed a trashy movie with a surprisingly depressing ending and Brian and Erik took naps. It's a sweltering evening, and the sky is full of smoke yet again. I was enjoying some couch time and discovered a glossy beetle crawling in my sweaty, campfire-scented hairdo, and my hysterical screeching and spastic dance of disgust awakened Brian from his slumber on the love seat. We are now all in the upstairs office. Erik just watched a video on You Tube featuring construction equipment operating to Fanfare From Also Sprach Zarathustra From 2001: Space Odyssey for no particular reason. I giggled at this bizarre specimen of manly cinema. Erik smiled and said, "Awesome" at the end, asking his father to play it again.

It will be a miracle if I survive the next week with all that is scheduled, but at least I'm as ready for it as I can be.

Watch Erik's favorite "awesome" video HERE.

Goodbye Spring Slides & Video

Drive Through Giggles

Yesterday was an amazing day. The sun was shining, and the mountains gleamed. The only time I put on a coat was early in the day when Erik and I ventured outside. I sat on the front porch to dry my hair in the sun and enjoyed my coffee while I blew sparkling bubbles for Erik.

After work, Brian and I decided that we would make a rare, admittedly naughty after-dinner run to Dairy Queen for Blizzards. The three of us piled into Brian's truck and enjoyed the orange glow of the sunset above the mountains on our drive. This extra hour of daylight means I no longer have to miss this beautiful sight while I sit in my office working.

The drive-through was clogged with cars filled with people with the same idea. We craned our necks to read the sign and decide what we would choose. Brian suddenly looked at me with a hint of panic in his eyes and announced, "My window doesn't roll down!" You see, it has been at least a year since Brian's window has operated correctly in his truck for some mysterious reason. It is quite obvious to me that men have a different set of priorities than women. I consider myself a completely sane, middle-of-the-road feminist, but it is pretty darn apparent to me that no matter how you slice it, men and women are entirely different in a thousand different ways, this one being a prime example. In the past year I have overheard him mumble something about borrowing some sort of special wrench from the neighbor, but nothing ever seemed to come of it. Understandably, he had much bigger fish to fry, and this little annoyance was soon forgotten. The last year has been a little difficult, to say the least.

Brian drives a double cab, four-door Dodge pickup truck. We purchased it after Erik was born because it seemed to be a safer family vehicle to drive than my tiny Toyota pickup ever was. To my complete amusement, when we pulled up in front of the drive-through speaker, Brian quickly reclined his seat so that the top of his head was just at the level of the window behind him. He then began confidently shouting his order from the region of the back seat. Erik looked down at his father, who was suddenly lying beside him, with a completely blank, slack-jawed expression. That did it. I burst into a uncontrollable giggle fit, which quickly spread to Brian, and he had to fight to contain himself long enough to get our order out. I was curious to see how he would pay for our order and retrieve our food. I was disappointed to see that he did not pay using that same method but drove a little past the window and simply opened his door. We drove home before our treats melted, and Erik was pleasantly surprised to find this bizarre oddysey yielded a little bowl of Oreo ice cream for him to savor.

There are many things in life that make it worth living. I have to say that, in my opinion, laughter is as close to heaven as we get at this point. Equally delicious is hearing my husband's rare giggles. I love that. At the risk of embarassing my very stoic, serious, professional, normally very dignified husband, which was certainly not my intention, I had to share this story.