Not-So-Random Acts of Kindness

I was sitting at my desk yesterday when I saw the UPS truck rocket down the road, trailing a cloud of dry desert dust. I haven't ordered a thing, so I was surprised to see it rattle to a stop in front of our house. The box the driver left on the porch was addressed to Erik. Well, that explains it (not). I wonder what Erik would order if he could. Cookies? Puppies? A box full of wheels?

When Erik got up from his nap, he spotted the box and asked who brought it. I explained that the UPS man did but that I didn't know who sent it. He seemed to understand. I sliced open the tape with a nearby steak knife and opened the cardboard flaps. Inside the box was the cutest little boombox ever. You can even hook it to an iPod, which I had not seen before. There was no information regarding who sent this gift whatsoever.

Erik was suspicious but curious. He asked what kind of noises it would make. I reassured him that it would only make good noises and that I would never need to punch the thing to get it to start, although I crossed my fingers when I plugged it in and inserted a Sesame Street CD, hoping for the best. As it turned out, it's even more quiet than the other one was when it searches for the first track. Even that subtle sound bothers the Mighty Erik Quinn.

So, thank you from the bottom of my blackened heart, mysterious blog reader. I am having a really tough week, and you completely made my entire month. There is music in Erik's room again, thanks to you!

Barbs

The children around us are growing up now. They have their own distinct personalities, and they are developing some clear interests in the world. This is amazing to watch. However, I have come to yet another realization about having a child who isn't so typical and still demonstrates a delay of a year or two.

Typical kids seem incredibly MEAN to me.

Sure, Erik's a pill to me and his father on a daily basis. However, he has quite obviously not yet developed the same assertiveness and aggressiveness that other children seem to have programmed in them for their survival. He doesn't know what it means to be competitive with his friends yet. He doesn't have a jealous bone in his body. His remarks about other children do not seem cruel like the ones I am hearing from other kids. This seems to have occurred overnight. Either I am incredibly deaf to what is coming from my son (a distinct possibility), or he just hasn't developed the sophistication required to sound like the others do. My money's on the latter.

It seems that lately I am shocked on a regular basis by what comes out of the mouths of typical children about Erik, especially now that his differences are becoming obvious to them. I don't believe all of these statements generated come from a mean spirit, but some of them seem to be taking on a distinctly nasty flavor. These things might not bother me at the time, but later I think about them and feel angry and sad for Erik. This probably stirs up memories of how difficult school was for me at times. I wonder what's to come in the future. A friend of mine reminded me that this is perfectly normal behavior from typical children.

I guess I wouldn't know.

Heart-Hangover #1584

Ya know I'd like to keep my cheeks dry today
So stay with me and I'll have it made

-- "No Rain" (Blind Melon)

One of Erik's friends celebrated her 3rd birthday this weekend. We had a fabulous time with our friends at the party. I enjoyed getting a good dose of the sparkles, pastels, and glitter that come with having a little girl around. The snow came down in big, gorgeous flakes all afternoon, and it was very cozy inside. Erik sang "Happy Birthday" with as much emotion and energy as Whitney Houston singing the national anthem and clapped his hands together when the song concluded. He allowed me to steal frosting from his piece of cake, and in return I let him eat in peace without my fussing over him like I usually do. He is really enjoying his own friends now and asks about all of them. I no longer have to listen to him begging me to turn the car around when we are on the way to visit children his age. He was even interested in the opening of presents and was delighted to see a purple monster truck emerge from under layers of wrapping paper. He staged a miniature carjacking and took off with it for the nearest tile floor.

One day after the party, the familiar heart-hangover set in once again. Although it is much easier for me to attend children's birthday parties than it used to be, my response varies greatly these days. While I do just fine sometimes, on other occasions I feel like collapsing the next day. Some people are afraid of the dark. I just happen to be afraid of balloons, buttercream, and birthday candles. Last night I asked Brian if he had difficulty watching Erik interact with everyone, and he very quietly said yes.

That made me feel a little better.

Erik gets in faces, whether they are familiar to him or not. He knows no strangers. He says hello hundreds of times to everyone for at least an hour, which often generates slight irritation from other children. It shows on their faces, which I suddenly feel like slapping, although I suppose I can't blame them. This now keeps us from taking him to the adult functions we would have taken him to when he was younger. While everyone is generally very kind and seems to find Erik's personality delightful, it's hard for me to hear the laughter that goes with taking him anywhere. And I hear it EVERYWHERE. I know they aren't laughing AT Erik, really, but my mama bear protectiveness kicks in each and every time, and that's exhausting. I admit that sometimes I wish he could just blend in a bit. When he saw my friend's father come through the door at the party, he yelled, "HI, SANTA!" The room erupted in laughter, and I wanted to crawl under something and die.

Although we often have to intervene when he is completely inappropriate with a stranger or someone who might find his behavior uncomfortable or disruptive, it is now necessary to let him go in a safe environment and watch what happens, even if it makes me very nervous. It's incredibly difficult for me to do. I was a shy child. I did my best to blend in and not do anything to draw attention to myself unless I was completely at ease. Erik is my polar opposite that way, and it terrifies me. He is always completely comfortable around people. His personality is very unusual. His behavior is even more unusual. I guess "blending in" just isn't part of the plan for Erik.

It's obvious my kid couldn't hide his (halogen) light under a bushel if he tried.

So, after binging on cookies and opening a bottle of good wine by myself yesterday, I suppose I feel better. There's nothing like a sloppy, pathetic session of feeling sorry for myself and letting the emotions ebb and flow. Facing what I feel head on seems to make the next birthday party a little easier.

While I was writing today, I thought of the "Bee Girl" in this music video. I haven't seen it for years. I found it, and it was just what I needed. Watch the whole thing, dance, and enjoy.

Dread

Wake up look around memorize what you see it may be gone tomorrow everything changes. Someday there will be nothing but what is remembered there may be no-one to remember it.

-- Michael Dransfield

Last night I dreamed I was attending a business meeting. The type of ridiculous time-waster I used to be forced to participate in years ago when I worked at a real office with real people. We sat around a glass table on a deck atop a skyscraper. We were surrounded by thick railings and glossy plants in chunky pots. As I chewed on the end of my pen and went to my own happy daydream-place, I glanced down at the streets below. I saw water gush up the stairs from the entrance of the subway. The thick, forceful column pushed a handful of dark silhouettes of what I finally determined were people into the air before slamming them down onto the sidewalk. After that, they were still and looked like soggy, crushed ants. I slowly stopped my chewing, removed the pen from my mouth, and realized I heard faint screams. I looked up into the sky and saw giant chunks of rock falling through the atmosphere, leaving lazy trails of wispy, toxic smoke. I looked at the people around me to gauge their reactions and determine my own socially acceptable response. They quickly gathered their papers and belongings. They were going for the door to the inside the building. I was suddenly aware of the lovely warmth of the sunlight on the skin of my arms and face and the summer breeze that ruffled my hair.

I remained seated, attempted to accept my fate, and said, "I think I'll stay here. It would be a shame to die inside on such a beautiful day."

I wanted to see what was taking place, even though I was doomed, anyway. I was left alone.

Everything went blurry for a while, as dreams tend to do. Because I voiced my preferences aloud (always a mistake in my case), I soon found myself trapped inside the confines of the glassy building. There were tiny, white garlands of lights strung around poles for Christmas, and people sprinted in every direction. I thought how strange it was that I couldn't find the familiar block lettering of the required exit signs. I knew in my heart that I would never make it outside. I wondered what I would do when the power went out. It really bothered me that I couldn't see what was coming for me. That I would die in the ruins of a dark building alone.

Then I woke up.

My heart flailed inside my rib cage, and I marveled at the sharp feeling of adrenaline surging through my veins and arteries while the rest of my body was almost paralyzed and half asleep. That alone has to be hard on a person. I could hear my pulse pounding in my ears.

I think I know why I had that dream. Partly, anyway.

I hate the unknown. It's also difficult watching somebody die, like I fear my friend is. The more time that passes, chances are his diagnosis of ALS is correct. I'm still trying to grip firmly onto my previous toasty-warm cloak of denial. We had a really good day together this week, and it was easy to forget that his body is giving out. I made him chicken enchilada soup, and he even ate a sandwich I prepared without a problem. He rarely eats anymore because it all goes down into his lungs and causes infection, as his throat no longer functions the way it should. However, if you ignore the limp and the cough, it's pretty darn easy to forget he's sick at all. Yesterday, though, he told me that he was speaking in a meeting and had to excuse himself. His lungs are beginning to fail at a frightening rate. Each week seems to bring another subtle change. Changes I usually choose to ignore or have trouble visualizing at all. He is consulting another doctor in another state, but there doesn't seem to be much anyone can do for him. He lives on nebulizers, pills, and physical therapy, but nothing seems to slow the course of this disease.

There are still good days. Days during which I feel as if we are sitting out in the sunshine, telling stupid jokes and laughing ourselves silly. Just like we used to do when our lives were so different years ago. Back in the days before we thought about things like developmental disabilities or neurodegenerative disease. I don't like talking about his illness, especially with him. Most of the time I just think of other things. Sometimes we talk about him finding a way to send me messages when he's gone.

My tree is decorated, and I bake cookies. I go to parties with Brian. I love the fluffy snow falling from the sky like powdered sugar. It's strange doing little things and pretending that everything is fine when I know he is suffering out there somewhere on his own. But I do. I do all that I can afford emotionally within the limits of practicality, but I have a life to live here and other people to care for, even though I'm hurting deep inside at various levels all of the time. I hate that my life is going to change yet again in the near future. I hate change. I know what's coming. I don't know how or when, but it's out there. I just can't see it yet.

And it's leaving a smoky trail as it searches for its target.

(Update: He is in the hospital this evening with yet another lung infection.)

Halloween Photos

Pieces

(Brandon and Erik admiring a caterpillar lounging on a leaf)

I met Brandon and his family for lunch here in town today. I grab every opportunity I can get with other WS families. Brandon and Erik are so incredibly different in many ways, but they look adorable together and seem to truly like each other. Brandon now has a beautiful baby sister, just a few weeks old, and Erik did better with the baby noises that came from her, although he still clung to me and acted as if she were packed full of ammonium nitrite and ready to explode at any moment. On his list of things that give him the willies, babies are definitely numero uno. Luckily, Brandon's parents are on the same page (the one that lists the potential jacked-up side effects that tend to occur when you subtract twenty-some odd genes from chromosome number seven) and did not take offense in the slightest. What is strange to me is that Brandon seems to be fearless when Erik seems to exercise an excessive amount of caution in unfamiliar surroundings and does not seem to be bothered by sounds like Erik is. They definitely both have very unique strengths and weaknesses, despite having the same syndrome. Did I mention how cute they are together?

I read the following article on line this evening about the death of a 35-year-old man with WS named Dave Hahn. Although I did not know this man, my heart absolutely ached when I saw his photo. He has features like my son. The same eerie physical similarities that come from belonging to a very special family consisting of those who have a genetic birth defect that makes them more perfect and good-hearted than I could ever be, no matter how hard I tried. Over the years, I expect to hear the news of many more premature deaths of those with Williams syndrome, but I can't imagine it will get any easier. Each time, a little piece of my heart seems to float up into the night sky and leave a dark hole in my chest where it once was. I know that in his community there is a hole that will never be filled. It hurts.

I learned the hard way just over two years ago that life isn't fair but it is precious, and I continue to learn that lesson in unexpected ways. Every single day with my son is a gift. This ride is difficult and sometimes very painful, but it could end without warning, so I find joy in it as much as I can. Erik has changed me so much. On the ride back from the valley with Brian last weekend, I looked out my window as we traveled down the highway, and we were slowly overtaking a motorcycle to our right. Behind the man piloting the machine sat an older, surprisingly proper-looking woman. She was very gracefully enjoying a hamburger, taking delicate bites despite their respectable speed, and she looked so incredibly content that I found myself smiling broadly. She glanced over at me, and couldn't help myself. I waved enthusiastically. She waved right back and connected me that much more with the world. I used to look at the ground as I went about my daily life, but now I sometimes take the time to look up into the faces around me. It's what Erik would do, and I can thank him for that. I have no doubt that the world is a better place because of the special people like my son.

I know my little world sure is.

Godspeed, Super Dave.

Sleepless

Courage is being scared to death - but saddling up anyway.

-- John Wayne

I guess sleeping isn't in the cards for me this morning. Sigh. Erik was lying in front of his bedroom door, putting his fabulously full lips to the space between the door and the floor, and talking loudly, which startled me out of a series of strange dreams I wasn't enjoying much, anyway. Once I put on my robe and went into his room to deposit him back in his bed, I was done sleeping. I didn't even make it to 3 a.m. I can't complain, however, as insomnia seems to be something I am leaving behind these days. I slept in yesterday until 8 a.m. I can't remember ever doing that before.

This may be the last entry in my blog until I get back. I had a fabulous day shopping yesterday and spending time with my best friends, who were wonderfully supportive and made me giggle until I was actual physical pain. I bought a new notebook to take with me if I feel compelled to "blog." We meet up with my parents at LAX Tuesday afternoon. I feel incredibly lucky they are so interested in the world of WS and how to optimally help Erik. Incredibly, shortly before they left, they bumped into some new friends at Costco, mentioned the upcoming convention to them, and were surprised to discover that this couple had a 36-year-old granddaughter with WS who only recently received her diagnosis. It's funny how things like this just "happen" at just the right time. It renewed our excitement about what is ahead for us this week. Today we will fill out the packet of paperwork Dr. Mervis sent to us for the research they will be doing on Erik and get packed. Another friend agreed to stay here, water our flowers, and care for my cat, making sure she gets her thyroid medication twice a day and doesn't throw any wild kitty parties. We are all finally healthy, and all systems are go!

Goodbye for now...

If anyone will be attending the convention and doesn't have my cell phone number, please e-mail me today, and I'll get it to you.

I Scream

I am still feeling like death warmed over. I'm on week three now. The antibiotics helped clear Erik's sinuses of the greenish gook bubbling from his nostrils, but he is still not quite right. At the moment, Brian is in bed napping, and I have already passed out on the couch once today in front of the television. I can only do so much around the house before I have to sit or lie down. I explained this to Brian, and he suggested that I am turning into a cat. This weekend I pretended I was not sick. While this was a horrible idea, I had a great time.

Friday I took a friend out for his birthday. We visited an expensive little Hawaiian style bar and grill, where we drank water out of porcelain glasses shaped like angry tikis and my drinks came with bright pink orchids floating on top. Our dinner was wonderful and fabulously seasoned, but the people watching was even better. We sat next to a local physician who dined with a large family and seemed to have a cellular phone permanently glued to his ear. He talked loudly, alternating between English and Spanish, and we rolled our eyes. After this continued for our entire meal, both of us wanted to leap across the table and beat him to death with his phone. We finally paid our bill and left, walking across the street to C*ld St*ne Cr**mery for dessert as the sun set.

I am a low maintenance kind of gal. I drink my coffee black, don't wear much in the way of expensive jewelry, and definitely don't need a lot of attention to thrive. I normally avoid places like C*ld St*ne. Why? The last thing ice cream should be is complicated or trendy. It's a child's dessert, right? Simple. No, this joint is where your ice cream is part of an "experience." It's placed on a frosty granite slab and beaten senseless with two metal spatulas. It's Benihana for ice cream. It's a violent Swedish massage for dairy products. It's...stupid, if you ask me. Heaven forbid you don't order a "mix in," pieces of cookies, candy, or brownies for instance, which are then violently folded into your food with the ridiculous metal implements of death they use. Personally, it makes my stomach turn. The less someone handles my food, the better, if you ask me.

We walked in, and I scanned the walls, which were covered with descriptions of complex specialty concoctions with cutesy names that failed to amuse me whatsoever. I would have had better luck reading Egyptian hieroglyphs by the light of a lantern. My head was already fuzzy with sickness, and I was less than patient to begin with. I finally gave up. The cocky teen with the carefully touseled hair behind the counter then asked what he could make us. I asked for a small butterscotch sundae. If there was a tinkling piano in the corner and we were standing in an old-timey saloon, it would have ceased playing at this point, and the patrons would have whirled around, hands on their holsters.

Okay.

What...the...f*ck?

His eyes widened. He looked at me with slight disgust and parroted what I wanted, only in the form of a sarcastic question, turning his head in the direction of his unfortunate coworker for her reaction. She just smiled. I confirmed that was what I indeed wanted, and he smugly reported that they did not have butterscotch topping, looking quite satisfied with himself.

Touche, my good man. Touche.

He then took a snotty tone and asked me if I had ever visited their restaurant before, insinuating loudly that I was a rookie in this very sophisticated establishment. I explained that I had indeed, that I still wanted a sundae, and that caramel would be just fine. I looked up at my very tall, burly companion, and I saw his lips begin to blanch as they pressed together into a thin line before sinking out of sight into his goatee. The young man behind the counter refused to help me at this point, passing the buck to the girl who was unlucky enough to work at his side. She politely inquired if I wanted French vanilla ice cream, and I gave her my approval. She then sheepishly offered me whipped cream and nuts, and I declined. I told her she could put a cherry on it if she wanted, which she did.

This is why elderly people must feel as if the world has gone mad. I am sure of it. Are we all so bored that we need to be entertained while we order freaking dessert? Really. The sundae was delicious, however, and after my friend made a call the next day to report how I had been treated, I apparently have free ice cream coming. And rightly so. I will be sure to go to that particular restaurant and ask for Mark.

However, I refuse to let him touch what I order with his steely knives.

Bring Out Yer Dead

We're still trying to shake whatever infected our household. I feel much more energetic (conscious), even though I sound like a paper bag full of snot. I'm okay with that as long as I can function and don't feel like passing out every five minutes. Erik started antibiotics. His sinus infection has cleared, but yesterday he seemed sick again, and I think perhaps the underlying root of all of this has been a virus, which, unfortunately, we simply need to endure. I have been ill now for two weeks. I dropped him off at Kathy's house yesterday so I could visit the clinic for another new, unexpected medical concern that is threatening to ruin my summer, and I hope that Erik didn't get her kids sick. I think we are all falling apart.

Girls' camping weekend was canceled this weekend. Bummer. I wouldn't have been able to go, anyway. Who wants to spend the weekend in a metal box with a girl hacking up her lungs? Nobody, that's who. Cigars are out of the question. I was invited to camp with margaritas in Nadine's yard Saturday night instead, which I might do, and was asked to a girls' lunch Sunday afternoon at the little hippie brewery downtown, where their stuffed burgers are simply divine. Tonight I dine with my friend with ALS, who is not doing well at all. Hopefully, I can get him to eat. Maybe eating would do me some good as well.

Oh The Humanity

The hot air balloon festival took place across town this weekend. This morning I opened the blinds and saw three of them drifting above the horizon. Erik pointed at each one and counted them for me. Knowing they always make their way on the breeze towards the desert beyond our house, I took Erik out onto the back porch and sat him in my lap while I enjoyed my first cup of coffee. As they rose into the sky, the silence was broken only by the distant sound of their powerful burners occasionally firing. From past experience, I knew that once they drifted over the house, I would be able to eavesdrop on the conversations the passengers were having. It is strange hearing words fall from a silent, blue sky like that. Soon the cool morning air bit me through my bathrobe, and I picked Erik up and carried him back into the house, telling him all I knew about hot air balloons.

A few minutes later, we heard a loud whoosh. Erik looked at me, alarmed. I stared back at him and listened. It stopped and then started again about three times, getting louder and louder each time. I knew they were closing in on us but realized the sound of the burners was never quite so loud before. I grabbed Erik and sprinted for the front door. We made it outside onto the front porch just in time to see the basket under a huge, red balloon come to rest next to the house. Cars and trucks began clogging the road edging our property and stopped to allow the people riding in them to gaze at the bizarre spectacle. A truck towing a large trailer with a picture of a similar balloon painted on the side came barreling down the other side of our property through the thickening confusion.

The people standing inside the basket looked at me, laughed, and said, "Good morning!"

Erik enthusiastically returned their greetings, and I realized I was still wearing only a bathrobe and fuzzy socks. Oh well. After we watched them wrestle with the thing in the breeze for a while, I went back inside and opened the blinds covering the bay window over the tub in the bathroom. By then, the crowd standing there had swelled to about 40 to 50 people. Gracie-Cat took one look at the giant orb and the people around it before her tail puffed to four times its normal size, and she slithered away with her stomach nearly touching the ground to hide under the bed. It seemed that the wind was such they could not take the balloon down without draping it over our house, so the burner fired, and up they went again. I looked upwards through the window and could see through the round hole in the bottom of the balloon. The basket went up after it and disappeared out of sight over us all.

How exciting is that?

I sat and finished the book on the daughter with WS today. It's tough knowing what to say about it, especially since the author could very well be reading this. I admit that it is definitely not the heartwarming story I was hoping for. The back reads, "Michelle’s story encourages every reader to overcome the overwhelming with the help of God to face Another Day, Another Challenge." I couldn't help but feel less than encouraged by what I read. While I admire this mother to no end and think she deserves every award known to man for her courage, persistence, and faith, I felt nothing but exhausted when I closed the book for the last time. It chronicles struggle after struggle, most of which are absolutely horrifying and only repeat themselves over and over, worsening in intensity. The book itself seems to end in the middle of it all during the most horrible scenario without a resolution in sight. If you are looking for a tidy ending, you won't get one here. I suppose there is never a tidy ending to anything. Life's pretty messy. She did her best to express her faith that God would provide strength and the tools to care for her daughter with WS in the end, but it was really disturbing to read. I'm extremely grateful I read it, would recommend it, and am proud to have it in my library but would definitely not recommend it to the newbies on this journey. In the end, I know that every child, WS or not, is different, and the challenges I have with Erik won't be the same as this family's. While I see similarities in our stories, I had to remind myself that she was telling her own personal story, not mine, and that the future is still very unknown for our family. The most important thing I took from it is how to fight for my child in the outside world and get people to listen. Even the ones who don't want to. I will never forget Michelle or her family and wish them nothing but happiness in the future. I hope that she somehow shares an update on their lives soon.

I spent the last part of my day with a couple friends on the front porch sipping cold beer and watching our kids play. I shook off the heartache I had from reading the book and soaked up some sunshine for a while. My friend with ALS stopped by to stoop down and play with the kids, making us laugh in the process, until his face and body betrayed him, silently communicating to me how much agony he was experiencing. He hugged us and left, leaving behind blissfully happy children and me fighting back tears.

I guess life is pretty darn messy.

Ascension

One morning last week I woke up and simply felt better, as if I were never depressed at all. Upon gazing into the mirror, I saw the skin on my face had broken out in one small cluster of angry, red pimples. I normally never sport a single blemish. I knew it. Stupid hormones. Two weeks of pure hell just ended abruptly without fanfare or any sort of medical intervention whatsoever. I'm having second thoughts about getting older. I think I'll stay in my 30s forever instead if this is any indication of how things will be for the next 10 years. One hysterectomy, please. Perhaps even a partial lobotomy. And, yes, I want fries with that. With several cups of gooey, orange fry sauce.

Brian is gone on a guys' fishing trip this weekend. My folks and their friends came over to the house last night to watch Erik while I went out with three girlfriends. I drove out to the mall to meet them for spa pedicures. The leg massage I received was so violent and wonderful that I was shaking when I left. The man practically beat the crap out of my lower extremities, and I would have gladly paid him for more. My toes are my favorite 1950s shade of glossy crimson again. After that, we wore our flip flops to the Mexican restaurant across the street, where I was served cheese-smothered food on a brightly colored platter the size of the steering wheel in my vehicle and a cold Mexican beer with a wedge of lime. We drank ice water long after our meals were consumed and practically laughed ourselves sick. From there, we went to a large hotel lounge on the river to have a cocktail. We paid three dollars to listen to an enthusiastic little band made of very nice looking, slightly balding men play some now ancient but very danceable pop hits. I commented aloud on how the place used to be full of boring, older people, but that didn't seem to be the case anymore. Wait a minute. Uh oh.

This morning I packed lunches for us both and headed to meet the girls again for a hike. We drove a few miles past newly-sprouted clusters of obnoxious mini mansions into the pine woods of my childhood for a quarter-mile stroll up to a viewpoint over a beautiful waterfall. Erik greeted everyone he saw. A man clearing brush from the trail cautiously turned his head to look at me a couple of times before he straightened up and said my name. I recognized him as a former classmate and neighbor I have known since kindergarten. We had last run into each other 10 years ago at our class reunion. We then continued our walk, but Erik was easily distracted and refused to walk further at one point, so I carried him up the hill, ignoring the fiery sensation building in the muscles of my thighs. At the top, I encountered one of Erik's physical therapists, who seemed genuinely excited to see Erik out and about. Erik seemed to enjoy the roar the water made as it cascaded over a ledge of thick volcanic rock, fell in a generous, white spray of glistening droplets to the ground far below us, and churned violently there before continuing its journey downstream. He appreciates strong, powerful noises. Forceful noises. Industrial noises. I find that awfully strange for a kid who is so sensitive to noise. I am still required to rev up the food processor out on the porch when I get a craving for hummus or guacamole.

Our outing was not enough exercise for any of us by a long shot, so we all headed back into town and parked in a bustling lot at the base of the butte, an old cinder cone that rises nearly 500 feet above town. My friend offered me the use of her baby jogger, and I placed Erik's narrow behind in the seat. He informed me that he wanted to get out immediately, but I bribed him with a cookie and told him to remain still. I then checked to ensure I had another cookie for the return trip. I pushed 35 pounds of boy up the sloping spiral road to the top without much of a problem. In the words of John Cougar Mellencamp, it hurt so good. I was incredibly proud because a mere twelve months ago this would have transformed me into a doughy, wheezing heap and resulted in an emergent call to some sort of rescue helicopter. We all ended up kicking serious butt. At the summit, we sat, chatted, and enjoyed the gorgeous view spanning the mountain ridge in the distance, the busy town, and the dusty desert before heading back down the nature trail with my body straining to prevent 35 pounds of boy from careening down the pebbly slope, through spiky puffs of sagebrush and juniper trees, over the edge, and onto the highway below. We made it to our vehicles and parted ways once again. I imagine I will be a little on the sore side tomorrow.

When we got home I found a box from Amazon in the mailbox containing the new book I ordered about a child with WS written from the mother's perspective. As emotional as I have been lately, I attempted not to crack it open but was overcome by curiosity and have already devoured nearly half of it in one sitting. As disturbing the description of her behavior becomes as the book progresses, it was nice to read parts of my life as a mother reflected back at me in the first segment. It made me feel that much less insane. I smiled when I read about many kids with WS living on a diet of peanut butter and jelly sandwiches, approaching strangers without fear, and manipulating unsuspecting adults. Erik tried to hold many strangers' hands today. He smiled and gently touched people's faces who stooped to talk to him and said hello to nearly everyone, including the tiny insects buzzing by us on the trails. I absolutely hate that he does this but see something incredibly beautiful in it, too. The book also unearthed some really painful memories. Memories of Erik having to sleep in his car seat at night for months because of his horrible reflux, leaving the gorgeous little crib and bedding set I had lovingly put together for him untouched in his nursery. Memories of multiple medical studies, some of which yielded horrible results. Memories of hearing "mentally retarded" for the first time from an uncaring, insensitive asshat in a white lab coat. Overall, though, even the sad memories were comforting because they are a little fuzzier to me now and are largely put away unless something like this book triggers them. I can now stop in my tracks where I'm standing in the middle of this bizarre life of mine and look back at where I have been, feeling a little more like a weathered veteran. Like I said, it hurts so good.

The view is pretty darn impressive from here, too.

Heartache

One of the closest, most important people in my life was diagnosed with a devastating, progressive disease this week. I was told yesterday morning in my living room as I stared out the windows and watched it begin to snow. I knew that tears would only make matters worse, but I was unable to keep them from spilling as I learned that our time with each other is likely cruelly limited. My heart is absolutely aching.

While I know I now have the strength to prepare for whatever comes in the near future, I'm not sure how I will go about it. I only hope I can provide as much support as I have received from my friend over the past two years. I wandered around the house yesterday feeling lost, unable to remember exactly what I was doing in each room.

Words seem lost to me, and I am taking a few days off until they come back to me again.

Gin and Thickening Skin

Last night I attended a very casual fashion show downtown at one of our fairly classy local martini bars with one of my best friends and about six women from my old place of employment, none of whom I really knew. I sat on a velvety couch with them around a metal lamp shaped like a martini, complete with a plastic green olive as big as my head and a glowing pimento, atop a glass-covered, claw-foot bathtub for a table. I ordered some New Zealand sauvignon blanc and was just beginning to enjoy its gentle bite on my tongue when the intelligence level of our party became painfully apparent.

The young woman to my left looked out the window at her friend sitting outside at a metal bistro table and began commenting on her attire--a cute, more formal tank top situation with pink, white, and black blocks of color and a chunky necklace of large, white beads that reminded me a bit of something Wilma Flintstone would wear. As I looked around at the 20-something set, most of the girls were wearing accessories like this in various colors.

"Ohmigod! Just LOOK at her! She looks like a clown! When she wore that outfit when we went to Vegas, I told her to get out of way when I took a fucking picture! She looks like SUCH a RETARD! I mean, that outfit is just so RETARDED! I would never wear that because I would look like a RETARD!"

She used that horrible word at least three times in rapid succession, and I winced each time she said it with gusto. I kept my lips firmly pressed together unless I was allowing a trickle of wine to flow between them. I also glanced at the ceiling for the hidden camera.

Nope, no Allen Funt.

I began to think to myself that perhaps my lovely, slightly tart white wine wasn't a good choice. Perhaps I should have chosen gin after all. My mood began to cloud with swirls of surliness. This was a great reminder about why my friends are either from years ago or male with very few exceptions. The cell phone belonging to the male friend I attended the event with began humming away with catty text messages apparently regarding my presence from the young lady sitting across from me. My patience was now in extremely short supply. Thankfully, I was not bored. The model familiar with our group became progressively more intoxicated and amusingly unstable in her wedge heels with each outfit she showcased, seemingly unable to resist the call of the complimentary lemon drops from the bar, and she began touching me excessively, shaking her Davis Brand jeans-upholstered posterior in my face. I glanced at her expensive backside, smiled politely at her when she looked back over her shoulder, and ordered an additional glass of wine.

Ohmigod.

On to Chapter Two

Last weekend was a relatively busy one for me and my family. We are usually a bit like hermits but were quite social. Friday night I went out with Shaena to dinner and drinks, which was a blast. Because we stayed out so late, I had a little trouble extracting myself from the comfort of our bed the next morning. A group of old friends, some of whom were visiting from Colorado, gathered Saturday, and we enjoyed a barbecue together.

I had my moments of despair this weekend. Unfortunately, watching the other kids play while Erik quietly clings to us is still quite difficult for me. I remind myself how completely uncool it is to feel sorry for myself, but somehow that doesn't really alleviate the pain that blooms in my chest at those moments. I suppose it is worse because my two girlfriends had their boys at almost the same time as I had mine. Watching the boys play together while Erik sits with us will never be easy, and I already feel like we are being left behind. We attended yet another barbecue on Sunday night. Between the two events, Erik spent exactly zero time with the other children. Once he relaxed, he cuddled up on a stranger's lap to doze off or retreated to where he could spin the wheels on a toy race car. Other children would occasionally come by and try to steal the toy he played with on their way by, but Erik looked blankly at them while their parents stopped the crime in progress, and he was left alone again.

I have to say how much I appreciate the way my friends and the adults who don't know us interact with Erik. He was treated so well by those he climbed on or talked to death (using three words in various combinations). I was reminded by one man that Erik was much more chatty than he was a couple months ago. When one woman asked me if I was looking at preschools for Erik, I chose my words carefully, but they were surprisingly easy to offer to a stranger. I came to the conclusion that "special education" was the correct term to use in this situation, as most people have no idea what "early intervention" is, and Erik is technically out of that program now, anyway. Our facility here is quite well known, and I wanted to give it the credit it deserves while expressing my excitement about Erik attending school there. Instead of going into a long explanation of what Erik has, I discovered it's quite easy to select a couple symptoms from the constellation of those that comprise his syndrome when appropriate or necessary. It is now officially no longer possible to hide the fact that Erik is different in this setting, and I'm exhausted from pretending my double life in therapy and early intervention parent group doesn't exist. The hostess of our second barbecue was very thankful I informed her of Erik's sensitive hearing and difficulty with the noises blenders make, as she was mixing margaritas. I said just enough to get us by, and he was cuddled and cooed over. The other children were scarce and only came across the yard to ask for something to eat or drink occasionally before disappearing again, so Erik stole the entire show.

The best part is that Erik was able to ride the motorcycle Saturday and his beloved all-terrain vehicle on Sunday. The men of our group always gladly oblige his obsession after politely looking to me, his old, stick-in-the-mud mother, for approval. Erik was in heaven. Ironically, the sound of margaritas spinning in a blender sends him into fits, but the farty, trillion-decibel roar of any sort of vehicle is a giant thrill for him.

Our last day of early intervention (summer session) was yesterday. Besides an unexpected visit from the largest spider I have seen outside of captivity (I made certain I was not atop a tuffet), parent group went without a hitch and ended without fanfare. I scored the name and number of another special needs mother who happens to give facials and wax eyebrows in preparation for Erik's first days of day care and preschool. We collected Erik's things, including pasta art, paintings, and end-of-the-year gift bag, from the classroom and made a quiet exit.

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.

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!

Mucho Insomnia

I feel content today but wish I could sleep. I know it was just one-something in the morning when my eyes fluttered for the first time today. I gave up tossing and turning at 3:30. We have pool therapy at 10 a.m. today.

Last night I met my friend Shaena at one of our favorite Mexican restaurants after work. When I worked at the clinic in the offices above her a few years ago, we would sometimes go there with our coworkers for margaritas. Sometimes I really miss working with living, breathing people in an actual office. Then again, I enjoy not having to put myself together to the degree I used to every day anymore. I still put makeup on, roll my hair, and don clean clothing, but most of the time I don't encounter a soul except for my family or the UPS man. My cat is the only one who gives me any static anymore while I'm working. It's nice to make my own schedule and wear my fuzzy spa socks all day. Transcribing requires using one of two foot pedals underneath my desk, and I don't think I could transcribe with shoes on anymore if I tried.

Last night every corner of the restaurant was packed, which was a mystery to me on a Wednesday evening. Even the tavern across the parking lot was beginning to fill rapidly with the Budweiser and hot wing crowd. I squeezed my Jeep into a skinny spot and hoped the cars with the long doors flanking me on both sides were waiting for their drivers to come out of the laundrymat or the ladies' gym and not the tavern. I saw Shaena drive in, jumped into her SUV, and helped her locate another skinny spot to park in before we followed the scent of steaming fajitas into the building. As luck would have it, we didn't have to wait. We procured a booth in the restaurant bar underneath a television set playing a pre-recorded, distant soccer match that nobody feigned interest in watching. This particular bar is fairly small, featuring maybe five carved, wooden booths, a couple tables, and a set of tippy bar stools. The room is decorated in colorful tile randomly implanted here and there in nearly featureless walls. It feels a little like a cross between the Golden Girls set and a cheap resort, but it's fairly clean. There is a rope of white lights sloppily draped behind the collection of bottles lining the bar's mirror, and the waitstaff is predictably surly. I wish I knew more Spanish (then again, maybe not). The food is great. There is always one guy getting drunk on the same stool at the bar who stares at us when we come through the door. The face on this man changes each time I'm there, but he's always there haunting the place. I imagine he's one of a collection of car salesman from our tiny auto row down the street, beaten down after a day of chasing families around the lot and asking them what it would take for them to drive a brand new SUV home. I used to see the same phenomenon at the Italian restaurant across the highway before the displaced ex-truck stop kitchen took over there manufacturing hubcap-sized pancakes and stomach-busting, 12-egg omelets.

We ordered the drinks on special (kiwi margaritas) and embarrassingly impressive macho burritos. They have the best margaritas in town. Sadly, I left only three paltry bites on my steering wheel-sized plate while Shaena ended up packing half of hers in a neat, Styrofoam cube. It was a great dinner, although nothing is ever spicy enough for me. I should carry a supply of hot sauce in my purse. Even standard hot sauce isn't hot enough for me. The tables next to us were pushed together to accommodate a boisterous group probably in their 40s. Shaena briefly ceased speaking and reported that a man was depantsing himself just outside the floor-to-ceiling window for the amusement of the diners trying to enjoy their chimichangas. He eventually staggered in to join the big group for drinks and dinner. He was obviously trying quite hard not to interrupt us but just couldn't help himself and peppered our conversation with obnoxious comments, yelling that we needed to pipe down and laughing so loud I winced.

It was nice chatting with Shaena. We talked about the crazy days we spent together in our teens and early 20s back in the day. We talked about muscle cars, white Levis, guys with combs in their back pockets, and how we used to magically roller skate with the grace of Olympic athletes after a few shots of cheap whiskey. In short, we laughed ourselves sick. We also discussed our families, where we are in life, and how we got here. Overall, it's clear that we are very lucky women to live the lives we do. It's great to have the friends I have who have been with me on this crazy ride for decades now and continue to stick by my side, even when it's undoubtedly quite difficult to be friends with me at times. I know that I am. Amazingly, they have never given up on me. Not once. I felt like a new woman by the time I walked out the door.

Tuesday, March 13, 2007, will be exactly one year since the diagnosis of Williams syndrome changed my life forever. It happened at approximately 2:30 p.m. I am trying not to think too much about it, but I find it impossible to prevent myself from doing so. I know what songs played in the car that day and what we ate. I can barely remember what it felt like to live without WS now. It's too painful and pointless to try, anyway, as there is no going back and there is no cure. I have witnessed some of my other friends on line reaching this milestone and attempted to try that feeling on like somebody else's clothing, but it doesn't seem you can fully understand it until you reach that day yourself. I'm very happy and excited to get past Tuesday, but the day itself brings a very bizarre mix of positive and negative emotions. I'm definitely feeling edgy. One moment I'm laughing, and the next I just want to be alone. In fact, I have felt a lot like being left alone in the past couple of weeks. Then there are the times I surprise myself by reaching out and calling a friend like I did yesterday. I'm lucky that there are people who are genuinely glad to hear from me, will happily meet me somewhere with very little notice, and don't mind drinking margaritas with me, even though they're still wearing scrubs after a long day at work.