The Water's Fine

Girls Only

(Me, Senior Jose Cuervo, and a surprisingly tasty Mexican cigar.)

Will I ever be happy again? This is getting really, really old. Seriously.

Well, in the meantime, my girlfriends are staying by my side and being as encouraging as ever. Thanks, Nadine and Chris, for helping me retrieve a scrap of my long-lost sanity. I feel like a queen when I arrive at Nadine's and am immediately handed an ice-cold margarita, complete with one of those cute bendy straws, a warm plate heavy with homemade enchiladas, and a side of fresh guacamole. My only regret was that I couldn't bring my fellow WS mothers with me for a girls' afternoon. Just for future reference, though, Nadine, just because I have a couple margaritas, you won't see me churning out snow angels wearing only my bathing suit, no matter how funny you think it would be or how much room is on your camera's memory card. Oh, sure, I thought about it, but we have to at least wait for fresh, fluffy snow, not the stuff with a razor-sharp crust of ice over the top of it. In addition, it would probably help if things were a bit more dark.

We should probably purchase another bottle of Patron, too.

Waterproof

Fourth Photos

Erik helping me feel more festive and getting ready for our little barbecue with my folks.



Erik wondering what the heck is going on outside.



Boppa and Erik enjoy the (illegal) neighborhood fireworks before the big show begins.

Happy Fourth of July

"Basically, it's hotter than a snake's ass in a wagon rut."

-- Adrian Cronauer (Robin Williams), Good Morning Vietnam

I'm sweating in my bathrobe at 9:15 a.m., and, to top it off, I just dragged myself out of bed! I have been sleeping incredibly well lately, with actual dreams and everything. Last night Lisa from next door called and asked if I would like to try a concoction she created from the thick meat of crushed dark cherries, mint leaves, diet cherry sparkling water, and a little Crater Lake vodka. We sat on her back deck while her husband pushed the lawn mower around the yard. The sun was sinking behind the mountains to the occasional sharp crack of fireworks that left smoky, brown smudges on the evening sky. After we went inside and watched a little of America's Got Talent (Who can resist watching a man prance around in platform heels?), Rob took me back to my door in their sputtering but surprisingly speedy golf cart. When I arrived, Erik was at his bedroom window bouncing up and down, his mouth forming the words "GOLF CART!" behind the glass.

Lisa told me she wishes she knew me better after I had Erik. She is one of the few people that admit they knew something was wrong with our baby right away. I explained to her that not many people did, and the ones who knew were understandably silent. I said that that there's just no great way to tell someone you think there's something horribly wrong with their baby. Even if there was, most of the people who love us were praying that they were wrong. I wish I had known her better, too, but, in any case, she does me a lot of good now. I am so lucky to have all of the friends I do. Most of the friends I have are of the tell-it-like-it-is variety. They tell me the truth and will defend me to the end if I need their help. I just don't ask them if my bottom looks big in a new outfit unless I truly want to know the answer.

The Wall Street Journal article about mainstreaming our children with WS has finally hit me. Basically, it was stated that mainstreaming children with special needs like WS is backfiring for a variety of reasons. The example they chose to use was unfortunate, as this student had what was obviously severe WS, and her teacher, who had not been given appropriate training, admitted she hated her job so much that she was becoming physically ill from the stress of handling children like these. I think this article was upsetting on many levels, but I am trying to turn the disappointment I feel into fuel for the battle in the school system. I am not out to create a perfectly normal life for Erik or pretend he doesn't have challenges. Normal is simply not going to happen one hundred percent of the time. What I plan on doing is providing him tools to live the life that he desires, including the best education possible to mainstream him in the real world, not just a classroom setting. If something works, we'll go for it. If it doesn't, we'll try something else, plain and simple. I will fight for whatever works, no matter what it takes. I may end up on the state capitol steps with a large sign at some point, and I'm okay with that. I know I won't be alone. The goal is to educate my son and train him to lead a happy, productive life. If there's one thing I have learned, it's that school is NOT and will never be the real world. I was very relieved to find that out for myself. The real world is so much better than I was led to believe as I sat in various classrooms. It wasn't until I left school in my 20s that I realized I could do anything I set my mind to.

How sad is that?

On that note, I need to work out and prepare a potato salad. My parents are coming to visit this evening, and I am barbecuing steaks and chicken. We will sit on our back porch with warm bowls of fluffy, sweet kettle corn and watch the fireworks explode off the cinder cone in the middle of town. We have a great view from here and will have the hoses ready!

Pedi-Cure All

This week was a hormonal roller coaster for me. For the most part, I am feeling wonderful physically and emotionally, but this week I just felt off. I was disturbed to hear about WWE wrestler Chris Benoit killing his wife and son before hanging himself, and when I found out his beautiful son had fragile X syndrome, it stuck with me all week. Mr. Benoit and his wife Nancy apparently fought about the care of their son before they died. She was feeling overwhelmed, and he snapped. Remind me never to do anabolic steroids.

I am feeling overwhelmed. My friend Shaena witnessed most of a now rare but especially snotty sobbing episode on Thursday and decided it would be best if we did something fun this weekend, so we did.

This concludes the depressing part of my note.

Saturday I put on some going out clothes: A pair of ridiculously expensive, flared jeans I never wear, a baby-pink top that shows I actually have a waist, and cotton-candy colored mules with completely impractical kitten heels that push me to six feet tall. My Barbie outfit. Without the extra 12 pounds I have been carrying around with me, things fit much better. I was very pleased. I drove out to one of our brand new shopping villages and met Shaena in the parking lot. We walked over to get a pedicure at a little nail salon.

I am not normally a fan of the strip mall-type nail place.

Sharp nail implements + Surfaces teeming with invisible bacteria = Horrible infections, the likes of which not seen since the Civil War.

One of my friends has titled each of these establishments here YOU PICK COLOR! in the past, as that is often what is screeched at patrons as they enter these shops. The last time I received any sort of nail treatment was years ago, and they were borderline verbally abusive. However, this experience was quite different.

We walked into a huge room crammed with women of all ages in various stages of nail care. There was dusky peach paint on the walls and no real ceiling. There were just hanging fluorescent tubes for lighting. It was obvious the place was new, as there were only two faded wall hangings on the far wall -- one picture of a pair of gorgeous feet and ankles draped along the length of a piano keyboard (how random) and one picture of hands holding a rose above the caption "French Manicure." A petite woman smiled at us and her mouth moved, but I was unable to understand much of what she said. I assumed it was a much more polite version of YOU PICK COLOR. We stepped over women's outstretched limbs to reach a clear plastic display on the back wall to select our toenail polish. I chose to depart from my favorite 1950s style bright red toes and selected a deep purple. Shaena chose a rich shade of orchid. We made our way to two empty spa chairs in the back of the shop and waited our turn. I found the remote on my chair and could not resist pushing the button labeled "thigh massage." Oh my. I was not disappointed. As we giggled and watched the goings on in the salon, Fox News silently loomed over all of us in the corner on the television by the front door, where there was a continuous loop of a flaming Jeep Cherokee lodged in a terminal at the Glasgow airport after a terrorist attack. The television was largely ignored by the women in the salon.

A man roughly half my size came out and began filling the glossy spa tub built into my chair at my feet. The water was scalding hot, and he gently but firmly pushed my feet off the rest into the tub. I bit my lip to prevent myself from screaming. He then turned on the air jets, which gurgled delightfully against the sides of my feet, and I soon forgot about my blistering skin and impending visit to our friendly neighborhood burn center. Soon I found myself to be extremely comfortable indeed. I looked over at Shaena. She seemed to be enjoying the button on her chair labeled "kneading action." She rocked back and forth as the chair worked her over and looked a little like like she was atop a horse on a trail ride. A woman came out to wait on her, and scoops of some sort of bath salts were sprinkled at our feet, turning the water bright blue. Soon we were being expertly buffed and filed. The man at my feet did not speak except once to ask if I was okay, causing me to wonder if anyone had previously freaked out and fled the shop, leaving a trail of wet footprints past the Lane Bryant store to the parking lot. My two smallest toes are shaped like question marks, and I would be lying if I said I enjoyed having them tweaked or touched in any way. My feet are generally very sensitive. His small, dark hands expertly slid over my calves and feet, slippery from lotion scented like orange blossoms. I'm not sure if I was more afraid of losing control of my relaxing bladder from the sensation of the swirling warm water around my feet or accidentally reaching some sort of horribly timed, socially inappropriate climax from the massage I was receiving. Either way, I whispered to Shaena, it was a recipe for being 86'ed from my our new favorite nail salon. The technicians chattered in Vietnamese, their seemingly serious conversation punctuated by sharp bouts of laughter. The man working on me tapped my foot when he wanted me to move it, and I felt a little like an elephant at the circus being prodded to with a cane to perform for an audience. Soon our feet were being dried in fluffy, white towels and our toes began receiving layers of lacquer. My toes began to gleam, looking a lot like like the paint on the side of a carnival ride on a bright summer day. The technician at Shaena's feet admired the flowers in the tattoo on her lower leg and hand painted matching flowers on her big toes. We were then very quietly and efficiently led to sit with our feet under drying lamps in front of a mountain of dog-eared People magazines. What fun!

From there, we said our thank yous and took our happy feet back to the car, where I exchanged the rubber flip flops I had brought for my pink mules, and we walked across the parking lot to the Italian restaurant to enjoy some crusty bread and hot crab dip with tall glasses of blush-colored sangria poured over ice. Our evening had just begun.

Ah, the healing properties of girlfriends.

Flip Flops and Lemon Drops

I'm not sure what the deal is lately, but I sagged back into a pretty severe emotional slump. It's strange feeling this way when the weather is so incredibly gorgeous. I will give myself some time to see if this cycle passes before I panic or run to the doctor for happy pills. I'm sleeping, exercising, and eating well, so there is not much else I can do. Looking at the last couple of weeks, I suppose the end of the school year and the major transition we are making are catching up with me. I feel slightly lost. We have no home visits or school for a few weeks, and I actually miss them. Our private physical therapy continues. This week we hit the pool. I believe Erik and I are bored, plain and simple. I find myself isolated here at home these days. Brian is working on his truck in anticipation of buying a little travel trailer, and I hope we can take the comforts of home with us and escape at the same time with our friends.

I am happy to report I have lost nine pounds with the help of Weight Watchers. Sadly, this puts me back to my baseline, before-baby weight, where I should have been this entire time. I have approximately 13 more to go from here and am confident I will be there soon, as I have never really put much effort into actual weight loss. The key is learning to eat like a girl again.

The 22Q13 (Phelan-McDermid syndrome) fundraiser last weekend was a fabulous affair. I found a pair of black capris at Macy's, but the blouse I had in mind never materialized, so I retrieved a little number I had yet to wear in my closet, gritted my teeth, and bared more skin than I usually do. I finished the ensemble with the black platform flip-flops I purchased in Hawaii. I picked my mother up, who looked equally smashing, and we drove to a gorgeous lodge atop the hills for the event. The "Welcome to Holland" poem and some photos of my friend's daughter were posted just inside the door. Seeing this triggered some unexpected emotion in me, and I was relieved to see my mom's eyes were watering and threatening to spill just like mine. Whew. We shook it off and were immediately welcomed by my friend, who gave us the rundown on the layout there, and I felt instantly comfortable. We ventured into a room containing tables of silent auction items, from free hair removal sessions to extravagant gift baskets wrapped in layers of glossy cellophane. I bid on a two-night stay in a cabin in the woods south of town and a dark bottle of cabernet sauvignon.

We spotted baskets of brightly colored flip-flops overflowing onto the dark floor as we made our way further into the lodge, and we were encouraged to select a pair to take home. Tables showcasing the culinary talents of five different local restaurants greeted us, including glossy pastries, fresh fruit, and tightly rolled sushi. Once we dished up, we were very efficiently provided martini glasses containing cloudy, chilled lemon drop cocktails. We headed out to the patio to join milling schools of women relaxing there. We found seats at a metal bistro table in front of a polite trio of young men playing jazz. Tucked discretely in the back corner of the patio were women enjoying pedicures and massages. Bartenders from the local martini bar poured what seemed to be a constant stream of lemon drop cocktails into glasses with sugar dust clinging to the rims.

It was a delightful way to spend a sunny afternoon, even though the two of us never seemed to really forget the reason we were there. The people I have met through our son are wonderful, and I am so very thankful I can call them friends. It was a nice opportunity to share this particular experience with my mother. My friend's little girl has attended Erik's special education class, and Erik is especially fond of stealing her little metal walker. Amazingly, this little girl is only one of approximately 300 people in the entire world with this particular genetic deletion. I had the honor of meeting my friend's sister-in-law, who sat down at our table, and her mother-in-law, who told us she was gearing up to run her very first marathon, the Portland Marathon, in her granddaughter's honor. From heartache comes amazing strength from everyone, including grandmothers. Watching my mother connect with this particular grandmother was wonderful, and it reminded me how difficult our journey has been on my entire extended family and friends. They need support, too. Amazingly, there is a nephew in this family with Williams syndrome as well. He lives in New Zealand and is reportedly doing well, living on his own and attending a technical school there. The updates on his life have provided me a great deal of hope.

We each selected a pair of flip-flops on our way out the door and said our goodbyes. I hugged my friend and made sure her daughter would be attending summer session with Erik. She will be there. After that, we may go different directions, but I am truly thankful for the special connection we will always have.

As we drove home, we both agreed we would attend this event next year.

I better start looking for that blouse.

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.