Erik Quinn: The Heart of a Family: August 2008

Sunday, August 31, 2008


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.


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.

Labels: , , , ,

Friday, August 29, 2008

Roller Coaster

Yesterday was a roller coaster ride. At five in the morning, Gracie-Cat screamed bloody murder for no apparent reason, as she tends to do, and Erik promptly awoke two hours early, pooping his pants in the process. I heard his voice and winced, hoping he would return to sleep, but he was soon lying on his side on his bedroom floor, putting his lips to the space between the bottom of his door and the carpet and talking as loudly as he could about nothing in particular so I would hear he was awake and retrieve him. He still waits in his bedroom for one of us to open his door in the morning, and this is how he prefers to get our attention.

Erik has two settings: Unconscious and hyperactive. After I changed his diaper, he bolted from the room. I tried to get him to settle down and lie between us in bed. He even took off and returned with his baby blanket and Stinky Dog as if he had entertained the same thought, but he just couldn't lie still. He laughed and rolled around on the bed instead, enjoying our groans of pain as he elbowed us in the eyes and sternums, finally giving up on the idea of a quiet moment of family closeness. Instead, he ran off to play with his collection of monster trucks.

By the time I needed to go to the grocery store and think about working later in the afternoon, Erik was rubbing his eyes and morphing into the personality I fondly call Psycho Baby. We made it to the store, but he kept grabbing at my sleeve and looking at me intently, seeming to silently plead we go home. He is usually happiest at any store full of people, but he was obviously miserable. He even stopped saying hello. Red flag. I knew I was in trouble.

By the time we arrived home and I was attempting to put away my purchases, Erik was spinning completely out of control. I knew his blood sugar was dipping and he needed food, but he was really raging. I managed to get him in his chair, but he flailed at everything in his reach and kicked the underside of his table with his incredibly long legs, growling and screaming, "No!" He kicked me. He hit me. He slapped me. He refused anything I suggested. Even cookies. I reminded myself that he was horribly tired and frustrated and that losing my cool would only fuel the fire. However, after a morning of time out after time out and being assaulted repeatedly as I tried to soothe him during similar episodes, I was plain exhausted.

He continued to yell, flap his hands wildly, and kick, shaking the table. He was absolutely inconsolable. He had returned to that distant place he was once trapped in when he was tiny. The place my words do not reach. The place he can no longer feel my touch. That place that sucks him in and leaves behind an empty, child-shaped shell.

It was then that I snapped.

If molten lava could flow from my mouth at this point, it would have. I was filled with rage myself. I was furious at the universe. How much could one person take? I had enough. A four million decibel high-pitched, scratchy screech suddenly came from my lips. It didn't even sound like my voice. My head snapped around from where I stood in front of my neatly stacked rows of canned diced tomatoes, and I looked at my child who seemed to be channeling the devil himself.


His eyes widened in shock. Wider than I have ever seen them. My sweet boy was instantly present, pouring into his own body like liquid soul and pushing the raging thing I saw moments before far beneath the surface. His face reddened. His bottom lip swelled from his face, and hot teardrops began to fall on his crumpled, tortured placemat, which, amazingly, was still atop the table. The cry was silent for a moment, and then he wailed as if I had just profoundly injured him. I suppose I had done just that. I felt two inches tall.

I successfully pulled my baby back from the place he goes, but I didn't feel good about it. I wanted to cry, too. Instead, I went to him and held him until the tears stopped. It didn't take long. I whispered to him that I was sorry I scared him and that I loved him. I rubbed the bumpy line of his spine with the palm of my hand and put my face in his soft hair. He was easily soothed, and I began to offer him a bowl of fruit and some crackers with peanut butter. He quietly devoured them as if nothing had happened, and I picked up the phone to call Brian to confess what I had just done.

After Erik's three-hour nap after lunch, he was a new boy. We played and cuddled. We were alone in the house for the evening. I made a pizza and turned on the first Oregon State game. After dinner, I placed Erik in his bathtub and hauled the vacuum out from the closet. Erik begged me to put the vacuum away, but I was easily able to assure him that it wouldn't be too loud and used it five minutes at a time, checking on how he was doing with it, turning on the bathroom fan and closing two doors between us. He did fine. When the floors were vacuumed and mopped and there was nothing to do but sit on the couch, enjoy the game, and listen to the happy boy noises coming from the bathtub, I did. I talked to Erik as he played. I kept asking him if he wanted to get out, and he told me "just a little longer" or "five more minutes." I laughed and told him that was okay.

Erik then had another surprise that would instantly erase the ugliness of the day.

His bright voice said, "Mama!"

I replied, "Yeah, Erik? Are you ready to dry off?"

Erik repeated, "Mama!" He then giggled, like he had a secret.

"Yes, Erik?"

He said, "Mama! Mama! Mama! Mama!" He continued to chuckle.

I found myself giggling and asked, "Yes, Erik? What do you need?"

He said, "Come here, Mama."

Now my eyes became as big as saucers. I sat in absolute shock. I hadn't realized it before, but Erik has never in his almost four years asked me to "come here."

Not once.

I got up quickly and stood in the bathroom door. He smiled up at me and began to do a dorky little spin in the bathtub on his hands and knees. He was obiviously showing off, and he told me how fast he was. I hadn't realized it before, but he has never shown off for me. Not like this.

Not once.

It was a glorious moment of NORMAL. A smile spread over my face, and my heart ached at the same time. How could I feel happy and sad at this at one time? Seeing the pure joy on his face after such a trying day and realizing we had just reached another little milestone most people take for granted, though, I was pretty certain of one thing.

I was mostly happy.

Labels: , , , , , ,

Monday, August 25, 2008

Hold the Cheese

The doctor Erik saw recently called me this morning. She sounded two thousand years old on the phone, but she was very encouraging and assured me that his stool studies were completely normal. As for his symptoms, they continue but have improved. Every other morning I have to wash all of Erik's horrendously soiled bedding and pajamas. It may take another week or two to really determine if dairy is indeed the problem, but I was instructed to continue the strict discontinuation of dairy for now. The soy cheese has worked very well, although he tires of the milk. We'll try rice milk next. Erik is now successfully using the toilet sporadically, although it does not amuse him in the slightest and he usually refuses.

As for me, I continue to watch my friend with ALS suffer. He is slowly losing the function in his hand and will begin treatment with a BiPAP machine soon to assist with his breathing. He admitted today that he finds it more and more difficult to get out of bed in the morning. He coughs excessively throughout the day, finds it difficult to swallow food, and endures bouts of pain and spasms that are so intense I witness his skin turn lobster-red and his shirt soak up buckets of hot sweat. He is virtually unable to even talk through these episodes anymore. He puts on a very brave face, but things seem to be worsening every day. Last weekend as I flipped through the channels on television, I found a movie about Jenifer Estess, a woman who helped launch Project ALS with her sisters after being diagnosed with the disease. It was really difficult to watch, but I'm glad I did. She died in 2003 at the age of 40.

I took Erik to see his friend Samantha today. Shaena and I drove to the next town to take the kids to McDonald's for lunch. I ordered Erik a Happy Meal. He loves french fries and let me feed him torn pieces of an entire hamburger, although he had no part in putting any of it in his mouth himself. When we are out, I usually feed him by hand, as he freezes up around strange noises and other children. The french fries, however, were a different story.

After lunch in the play area, we took the kids to the gaping hole that houses the stairs to the Playland slide. Erik had no interest in entering this dark orifice, so after a brief comparison of the tunnel's size and the width of my buttocks, I sighed, took my tennis shoes off, and crawled up inside, encouraging him to follow. He wasn't buying it. I disappeared up the little spiral staircase, and he followed only because he was out of attractive options. We found ourselves at the top near a plastic tube that snaked out of sight down below. Thankfully, there were no other children using the equipment to complicate matters. Erik was anxious enough. I decided that I certainly wasn't going to cram myself back down the stairs and prayed that the grease trap in the restaurant wouldn't burst into flames while we knelt inside this gayly-colored death trap. I gently shoved a protesting Erik down the stairs, feeling like the most horrible mother in the world, and the tennis shoes capping his plastic orthotics made his horrific ride down the tube slower than molasses, prolonging his agony. Weighing several hundred times more than my son, my descent was much more rapid. I tried not to run him over and managed to gently shove him through the length of purple plastic tubing. The static from the friction against the slide raised my hair at the roots, and with everything being bathed in a purple glow, I felt as though I was moving through Grimace's lower intestine. Finally, we emerged. I was crazy enough to try it once again with Erik. He was even less amused this time. He looked at me, and his bottom lip quivered. His face reddened in alarm. He said, "Go home, Mama?" as he burst into tears. We were done. After I forced him to slide down one more time, we gathered our things, said goodbye to our friends, and drove home, enjoying the scenery and even driving through a farm supply store parking lot to admire the shiny, red tractors. I would consider the entire outing successful, although I wish simple things like play didn't feel like such a struggle. Or more therapy. I suppose every experience is therapy, no matter who you are, if you think about it.

I have attempted to utilize play areas and playgrounds with the help of my girlfriends more and more over time and have noticed Erik's general reaction is greatly improving. He still struggles with tripping, falling, and running into things and drops to his hands and knees to crawl over simple, unfamiliar surfaces that his brain doesn't define well while other kids zip past him without a second thought. The last time we loaded into the car after an hour on the playground, he told me he wanted to go back. That's a first for him. Now if only I could muster the same enthusiasm.

Instead, I still fight tears.

Labels: , , , ,

Thursday, August 21, 2008


Last night I had one of the best belly laughs I had in months. Brian reluctantly joined me to watch a very strange amateur cake bake off on the Food Network, and the show took a very strange turn at one point. The comments he made upon seeing one woman's sagging cake layers sent me into absolute hysterics. It looked as if she had put on a blindfold and hucked frosting at it. It was actually bald in most spots, and she calmly explained that she had "a little trouble" with it. We exchanged puzzled looks, as her first cake looked relatively attractive and was adorned with complex decorations. I cannot remember exactly what it was he said, but he leaned forward to get a better look and then reacted loudly ("What the...?!") followed by suggesting she use a garden trowel to apply frosting for the next competition. I have no idea why, but that did it. My manly chortle transformed into a hyena-like squeal, and tears began to shoot from the corners of my eyes, which I had squeezed shut so I could filter the shocked expression on his face from my field of vision. My cheeks felt like they were in knots and began to cramp. At one point, I feared I would wet myself and then just black out from lack of oxygen, which, surprisingly, I suspected I would still find humiliating after these years of marriage. Instead, I rolled around in delicious agony on the love seat with my arms wrapped around my ribs, and eventually my giggles dissipated into an octave only dogs could hear. I was honestly clean out of my mind. When I could once again regain my composure, I still went into spurts of giggles for nearly an hour afterwards as I got ready for bed. It was wonderful and horrible at the same time.

Wow. I really needed that. :)

Labels: , ,

Tuesday, August 19, 2008

Lactose Intolerant

Peasant 1: Who's that there?

Peasant 2: I don't know. Must be a king.

Peasant 1: Why?

Peasant 2: He hasn't got shit all over him.

-- Monty Python (The Holy Grail)

Our doctor's appointment went well. One thing that absolutely rattles Erik at the clinic is the scale. He clamps his hands tightly over his ears and refuses to step onto the wobbly platform. The clanking the device makes sends him into orbit. The nurse asked him to step up and place his feet on stickers shaped like space ships, but I was required to force him to step forward, resulting in a complete meltdown. As she looked quizzically at us and tried to interpret just what in the dickens was happening, I quickly blurted out that Erik hates noise. There was hardly any noise whatsoever, but I know this particular type of metal-on-metal clanging is the reason Erik freaks out in this situation. It happens every time we visit the doctor. Why I bother explaining this to anyone is beyond me, but I insist on educating people about Erik. It's just awkward, awkward, awkward. Surely there are other children who visit this facility regularly with sensory processing issues. Right?

So after our super-accurate measurement (not) of Erik's weight (34.25 lb with me forcing him forward and supporting most of his weight with the palms of my hands), we waited for Dr. Brown. Erik still had his hands over his ears, despite me assuring him Dr. Brown would likely not be very noisy. It turned out that she was much older and straightforward than I expected. This was a pleasant surprise. She was also very quiet, which pleased Erik greatly.

I explained that after 24 hours of Erik being taken off milk and milk products, I saw the most normal-appearing stool appear in Erik's diaper this morning. Unfortunately, this means that there is a strong possibility Erik is lactose intolerant. She confirmed my fears that Erik has no extra body fat to lose and that eliminating dairy would be a gigantic pain but suggested I do it for the time being. This means no more macaroni and cheese, milk, cheddar, seven-layer burritos, or chocolate. Actually, milk or milk fat seems to be in everything. The nurse then gave me a small plastic bag containing three screw-top vials, some of which were filled with red preservative solution. It was an intimating-looking kit that looked like the components of a biological weapon. Two Smurf-blue latex gloves were thoughtfully folded and placed in the bag, and I chuckled to myself thinking of the messes I have scrubbed out of Erik's bed each morning and from the bathtub. I wish motherhood was as neat as a pair of latex gloves. It's not. Not for any mother I know, anyway.

I am to scrape Erik's diaper with wooden tongue depressors and collect samples of stool for the entities I am certain he doesn't have (ova and parasites, etc.). However, I will do this in the spirit of good sportsmanship and patient compliance and deposit a teaspoon of the nasty material into each vial. I have been instructed to transport them to the hospital within a couple of hours or place the specimens next to my collection of pot roasts and popscicles in the freezer until I am able to get them to the hospital lab. Between the wide feline skid marks resulting from Gracie's thyroid problems and the material that springs forth from Erik's bum, I choose to keep the last space in the house, which happens to be inside a major appliance, completely poop-free. I have to draw the line somewhere. Instead, I plan on driving to the hospital with my sloshing bottles of dung tomorrow.

After our appointment, Erik collected his sticker from the nurses' station and actually seemed to really question me about its purpose for the very first time. I usually stuff stickers in my purse for the nurses' benefit, as Erik formerly cared less about stickers, candy, or toys. This time I handed him the sticker, and he seemed interested in it. I was pleased. He said goodbyes, thank you very muches, and see yous to each nurse and the doctor on the way out. The way he said these things seemed to surprise and thrill each of them. They giggled, which made me giggle. Erik does pour on the charm.

We then took our hemp shopping bag to natural food store and purchased expensive tofu shaped like mozzarella cheese and a carton of soy milk. The faux cheese had a label assuring me that it actually "Melts like real cheese!" Yikes. He drank three glasses of the vanilla-flavored light soy milk when we returned home. I tried it and thought it was the sweat of the devil. I'll stick to skim, thank you. The jury is still out on the cheese.

I plan on making pizza tomorrow night. We'll see if anybody notices the tofu.

Labels: , , ,

Monday, August 18, 2008

Wasting My Time

Erik and I are going in to the pediatric clinic at 9:10 a.m. tomorrow. I became instantly cranky when I called the "nurse advice" line, and she told me that collard greens and kale were great for GI problems. I felt like smashing myself over the head with the phone for even attempting to get in to see someone via this route. I don't know much about children, but I know I have yet to see a 3-year-old gleefully mowing down a plate of cruciferous vegetables, especially when they are ill. I eventually was transferred to the appointment center and was informed our doctor was not available. Sadly, I don't even care anymore. Like it matters! I stated very simply that my son had a GI problem on top of a genetic disorder nobody else in town has/that no physicians know jack about and demanded to see someone who regularly saw children with Down syndrome. Apples and oranges, I know, but I couldn't think of anything else to ask for. Erik's GI problems are likely not related to WS, but children with WS have tendencies toward certain ailments, and I just don't want anything missed.

I plan on being a complete and total pain in the ass, after which I will probably end up calling the children's hospital in Portland, anyway.

Labels: , ,

Morning Rambling

I turned on the news last week as I fixed breakfast and heard that a man on a bicycle had collided with an SUV making a turn not far from here. He died at the scene from massive head injuries. When they announced his identity, I gasped. He was a member of our church congregation whom I see regularly. What was worse, however, was that he was the son of my author-friend who has been so kind to me and Erik. You might recall that she is also the mother of a woman with severe developmental disabilties that resulted from a bout of childhood meningitis. She wrote a book about her family, and that's how I came to reach out to her and ended up sitting in her home eating freshly-baked scones last winter. You would think there would be a limit to the amount of pain one could experience, but apparently there is not. I can't help but feel frightened by this.

I have a head cold in the heat of summer. Actually, all three of us are sick with it. It was over 100 degrees yesterday, and I stayed on the couch watching Food Network challenges. There was a dry, windy storm of some sort in the middle of the night, and the gusts whipping through our bedroom windows and doors were almost deafening at one point, making it sound as if we were riding on a stagecoach in the dead of winter. I opened things up even more, and the whistling at least ceased. The air smells like a campfire, so I assume something nearby is engulfed in flames. This does not result in high-quality sleep. I'm sitting in my office now, and rumbling thunder and sheets of lightning are beginning over the desert. It certainly doesn't feel like five in the morning.

Erik's bowel has been malfunctioning lately. One of the wonderful symptoms WS often manifests in children is constipation so severe that it can result in prolapse of the rectum. Erik briefly had constipation as a infant when his calcium levels were probably sky high and we were completely unaware of his syndrome. I remember seeing blood once when a nurse took his temperature. Since then, however, things seem to pass right through him, sometimes undigested. I have to change his bedclothes almost daily, as the amount of what comes from him easily maxes out and overflows his fluffy little diapers. I change him often. What comes from him has little to no at least normal odor and looks, to say the least, alarming. There is a lot of mucus. I will call the doctor today. Three things that come to mind are (1) food allergy, (2) Crohn's disease, and (3) thyroid problems, although it could be anything, I suppose. This has gone on for months to some degree but only seems to be worsening in intensity and might make school more than a little dificult at this point. I'm terrified he has a food allergy. The last thing we need is to be subtracting things from the relatively short list of items he eats.

Erik has discovered the joy of attending barbecues. He loves everything about them and says "barbecue" in his usual Cajun accent. I can just visualize his cute little face on a bottle of BBQ sauce on a supermarket shelf someday. Hey, it could happen.

And now, as promised, CHIA: DAY ONE.

1) Submerge small terra cotta cat in bucket of water. Leave overnight, ensuring kitten is good and dead.

2) Mix a portion of the seeds from provided packet with one-quarter cup water. Let sit overnight until the mixture thickens into a gel reminiscent of the opening scenes of Invasion of the Body Snatchers. Tell family what is sitting on windowsill so dark muck does not get spread on toast or dumped down garbage disposal.

Labels: , , ,

Wednesday, August 13, 2008

Manly Accessories

(Brian is the surly-looking dude in the middle)

I have been awake for hours, and it's only 5 a.m. My stomach feels like a thick plastic bag full of churning battery acid. There is a skunk below my office window somewhere in the darkness, and the pungent odor is making my tortured gut do flip-flops. I swallowed a half charred hot dog and three cheap, watery beers earlier, and I can feel them sloshing around, not even beginning to digest. Stress has been taking its toll on me. I have watched myself withdraw from the world around me and have become more antisocial than ever. I just don't feel like dealing with anything. My friends are even beginning to worry. I haven't been returning phone calls or e-mails. I can hardly even concentrate long enough to blog. My head is a mess, and I am finding it more and more difficult to perform tasks more complicated than locating my car keys. There is a lot going on here outside of Williams world for once, and I am not coping well. In fact, I cannot bring myself to talk about the feelings I have about life at the moment. They are too raw, painful, and personal. At least for now, anyway. For now, I am in survival mode. That's all I can do.

I have been having some fun lately, despite my desire to become a complete hermit. Yesterday was Brian's Kung Fu San Soo demonstration. I found myself sitting on a flimsy folding chair in a small Martial Arts studio in which the air was hot enough to fire pottery. Thankfully, my friend Shaena sat by my side, easing any anxiety I had about being immersed in a social situation with people I don't know. Our husbands have been friends since second grade, and they apparently got into a fight soon after they met. I found it more than humorous that we were about to watch them beat each other up again. When we were informed the bathroom downstairs had been used by one of the guys and overflowed its banks, Shaena and I scurried over to the biker bar next door to use their powder room. After a very brief discussion in which I'm unsure if any actual words were exchanged (we communicate telepathically at times), we ran up to the bar to swallow one fiery shot of Jack Daniels each followed by swigs of ice-cold Pepsi on the way out the door. The spiky sensation of the carbonation felt wonderful inside my dry throat. We then ran back across the softening, sunbaked asphalt to the studio housed in a cinder block building in the middle of the industrial part of town as our deodorant and hairspray threatened to fail in the heat. Shaena's slow cooker full of baked beans was plugged in near the bottom of the stairs, and the delicious scent of the food was just beginning to waft through the air, serving as a reminder that we would have a celebratory feast soon.

The demonstration began. We received a brief introduction regarding San Soo and the art of street fighting. The word "violence" was used quite casually several times and seemed to hang in the air. Being a survivor of a violent crime years ago, I detest violence but have developed a strange obsession with it and fully appreciate some of the methods used for self-defense. There were two groups of people there. Our region wore the traditional gi, a double-weave cotton uniform that is about as heavy as the lead bib they drape over your chest at the dentist right before they fire up the x-ray machine. Our group was soon dripping in sweat but looked sharp. The group of men from the valley wore red polo shirts and black pants, interrupted by thick belts in colors that indicated each man's classification or rank in San Soo.

Watching men's sweaty bodies collide like competing rams during mating season immediately took my mind off the temperature of the room. We clapped and yelled enthusiastically, and the atmosphere was surprisingly comfortable and supportive. Violent, yet warm and fuzzy. The action was slowed down for our benefit so we could witness the techniques used, and the grunts and groans were purposefully exaggerated. I was thankful I attended because I could see what a wonderful, healthy emotional outlet and escape this could be for my husband. I also pity the fool who tries to snatch my handbag at the mall. After the demonstration and the awards ceremony that followed, during which Brian received his yellow belt, we went to pick up Erik from his day care provider and drive to a nearby house with the other participants and their families for a barbecue. Erik was in constant motion except when he located a wheelbarrow on the side of the home. He spun the tire on it for extended periods of time, sometimes flipping onto his back in the wet grass to use his feet, creating a gnarly, wet stain on his clothing. When I went to check on him several times, the other children, who ranged greatly in age, were gathered around him talking to him or playing nearby. Surprised, I smiled and went back to my chair with the adults. Erik often gently grasped the hand of the beautiful older girl who played with the group, and she graciously let him trail her around, even coming back when her family was leaving to say goodbye to him. The only time I felt anxious was when Erik repeatedly encountered the one step from the deck to the walkway in the center of the party. I would yell, "Step down!" in the middle of my conversation with another partygoer, and he would careen off the thing at mock speed, miraculously landing on his feet and continuing his path of motion without skipping a beat. He is simply horrible with steps. Several people laughed and commented on how active he was. It was hard to tell if anybody picked up on the fact he was different, although I thought it was pretty darn obvious. One man labeled him a "real character," and I cheerfully agreed. He refused to stop long enough to enjoy much dinner, and we let him run and play. He chased the dog around, asking the poor animal a relentless string of questions a la Geraldo Rivera.

When cardboard boxes full of colorful, largely unfamiliar bottles of wine and liquor were produced and our grilled meat sandwiches and salads had been consumed, I finally made the motion to leave. I was afraid that if I stayed another few minutes, I would join the friendly, testosterone-soaked mob in the festivities and end up asleep on the attractive landscaping behind me.

(Next in this strange, reality-dodging series of posts: I finally water the Chia Pet I received for Christmas. Stay tuned.)

Labels: , ,

Friday, August 08, 2008

Alone Time

I had the afternoon to myself today. First, I stopped in to a dark, windowless bar the size of my living room I discovered recently to tune the world out, play video slots, and have a whiskey with a handful of the geriatric set having lunch. The girl tending bar remembered me from the single time I had hidden there one afternoon not long ago, and she made a nice fuss over me, patting my shoulder and making sure I was comfortable. The busy, well-lit places I used to go every couple of weeks have recently closed their doors. Times are tight. Despite the troubled economy, I won $1.10 after playing for about an hour, cashed in, and said my goodbyes. I then escaped out of the heavy, halfway hidden wooden door back out into the humid afternoon and drove to a used bookstore I have never stopped in but have wanted to for four years now. I made myself at home in the stacks and selected a true crime novel about a criminal profiler, a Stephen King book of short stories I never heard of, and some true stories about the American West by Zane Grey. I always wanted to read Zane Grey but never have. With the male half of my personality satisfied, I applied lipstick and declared it official girlie-girl time. I headed next to the ugly, bustling little strip mall to visit the salon and slipped cash to the merciless woman half my size who takes me to the back room and rips off most of my eyebrows. She displayed the muslin strips covered in my former facial hair like trophies and shook her head. Despite her stern facade, I laughed and told her I had missed her terribly.

It was glorious time well spent.

While I did this, I tried not to think about my friend lying inside an MRI machine imaging his lungs, which turned out to contain food and debris he can no longer seem to funnel down the correct tube because of his ALS. He has a resultant infection and needs to be on IV antibiotics, as the normal ones do not seem to have much effect anymore. He seems to be constantly battling lung infections now. I now wait for a phone call to see whether he is hospitalized or not.

Life is so strange. But I'm ready to face it again after just a few hours to myself.

Labels: , , , ,


My last post shed some light on why I have some of the issues I do about childbearing. Watching myself type the word rejection was what Oprah would call a "light bulb moment." To me, there is almost nothing worse than feeling rejected. Especially by my own child for days/months/years at a time when all I ever wanted to do is love him and have a natural, loving relationship with him. This started in the days after he was born when he looked right through me and when my own milk seemed to be an acidic poison in his body. We didn't naturally mesh back then, either. It seems that my defense mechanisms have kicked in, as my heart would not survive this all over again. All I can do is the best I can and tell him I love him each and every day. I know the kid loves me back, and I cherish the moments he drags his blanket out after his nap to cuddle with me or rubs his nose against mine and giggles. We just really struggle some days to connect and communicate, and it hurts. The last couple of weeks have been really difficult this way. I get angry because I have to work so hard on the simple things that should just HAPPEN for both of us.

I guess this blog is good for something after all.

On that note, I ended up going to support group last night. We were going to meet in a local park, but it stormed off and on all day and was raining cats and dogs by the time our meeting was to take place, so eight of us sat around a large wooden table in a bustling corner store that has been converted into a trendy little store/deli/pizzeria in the neighborhood where I grew up. It was nice. Just being in the presence of these women was relaxing. However, times like these I realize how horrible I am at verbalizing anything at all. Being alone most of time probably doesn't help me any. I would have an easier time knitting a sweater while roller skating. Yes, it feels that awkward. I'm really much better writing things down. I have a lot to say but once it's my turn to speak, I can't seem to find the right words to do my thoughts justice. If they think I'm crackers, they sure don't let it show and are quite gracious.

Anyway, I would like to welcome the women I consider beautiful warriors. Thank you for visiting me here and being so incredibly kind to a freak show like me.

Labels: ,

Thursday, August 07, 2008


Life ain't always beautiful
Tears will fall sometimes
Life ain't always beautiful
But it's a beautiful ride

-- Gary Allan, "Life Ain't Always Beautiful"

Erik and I are having a rough week. Erik's favorite thing to do these days is to slap me repeatedly and yell no. He did both without warning after I made him a sandwich and presented it to him for lunch this afternoon. I concluded that he wanted peanut butter instead of cheese and just didn't have the words to express his disgust. I'm looking forward to the beginning of school when we have a full schedule. I have support group tonight, but I don't feel like talking about anything Erik-related today. I found myself here instead, and so I type, surprised that there are actually words coming from my fingers.

When Erik was a baby, I remember absolutely nothing about being a mother coming naturally to me like I was led to believe it would. I remember holding my limp, horribly skinny little baby on my lap and gripping onto his wonderful, wide feet, pumping them up and down while I asked my own mother, "What am I supposed to do with him? Am I doing this right?" She said that she thought that I was, but I always suspected I wasn't doing the little things correctly. He didn't give me the feedback other babies seemed to give their mothers. Maybe that's why I never wanted another child. I simply can't stomach the rejection again. I just attended my 20th high school reunion, and a few of my old classmates asked me if I was going to have another baby. There were three pregnant women there. I automatically told them how fabulous my life was and that it wasn't on the agenda. Nobody needs to know what's really happening in my head or how messed up that topic is for me.

Some things have changed since I had a newborn, but some things have stayed very much the same. My husband called me from work today to chat, and I admitted I still have no idea how to play with our kid. He is not thrilled with toys, doesn't understand the concept of playing a simple game made for peers his age, and would rather destroy things around the house most of the time than do a structured activity. We still have locks on our toilets and toilet tissue for this reason. While Erik is sticking his head in the toilet giving himself swirlies and spinning glorious, pale loops of toilet tissue into the air, his friends are learning to use these items correctly and have moved on. It just kills me. A friend showed me how to lock my computer so I didn't have to turn everything off, and Erik spent the morning at my desk pounding on the keyboard, despite my strict warnings not to. He had a borderline violent physical reaction each time I told him no and took him to his room but continued to do it, anyway.

What do I do with him instead? You tell me. I can't take him to a McDonald's to get coffee and let him play because he clings to me and hates every second of it. Sometimes he'll even beg me to go home. I can't take him to the playground because he gets run over by the other children, and I die inside after watching the other families, although lately I have been forcing myself to go for his sake. He is beginning to enjoy making his own fun. He sometimes plays with the filthy bark chips and is developing what may be an obsession with the park sprinklers but rarely wants to use the equipment made for children unless there is something to spin attached to it. We inevitably end up alone in the corner of a park, trapped in his own world. He now enthusiastically greets the families riding by on their bikes, and most of the other children ignore him or look at him like he is a freak after he says random things to them or shouts hello 50 times in a row. I no longer care how other parents looking at us, but the other children still kill me. Our outings to get groceries are almost history. He almost doesn't fit into a shopping cart anymore, especially with his plastic orthotics on, and I am unable to control him in the store without him being strapped down. He reaches out to grab everyone who passes by and will not let go of them, which can be quite frightening/embarrassing. And don't even ask me about how toilet training has gone. He will be FOUR soon, and I'm still changing diapers with no end in sight, being kicked in the chest while I try to care for him. Maybe we'll go to the library again soon. That went well last time.

I know that once his IEP rolls around, I can ask for help again. One more month.

His birthday is in October, and he will be visiting the cardiologist. At the convention I learned that ALL people with WS have what is called "elastin arteriopathy." That's a type of general arterial disease. We just need to know if this currently affects his health or not. No biggie, right? In addition, we have to sedate Erik to keep him still during the echocardiogram. Our attempts at unsedated echoes in the past have failed miserably and ended up requiring an additional appointment. Sedation in itself is risky, too. In one afternoon, the procedure itself or the results of the procedure could alter our lives forever. While I know things will likely turn out just fine, I just detest waiting.

So here I sit, trapped at home. Lonely but wanting to be left completely alone.

Labels: , , ,

Tuesday, August 05, 2008

Back to Reality

Today Erik said, "Poop."

I became very excited and asked him if he needed to use the potty. Yeah, I'm that naive. I should have known.

He looked up at me and followed up with, "There's poop on the Jeep, Mama."

He then held his toy Jeep Wrangler up for me to see. Sure enough, there was a Hershey's Kiss-sized dollop of cat excrement on the left rear tire that had mooshed up onto the fender. It was a nice, rich brown with chunks of prescription rabbit and pea cat food mixed into it, and the smell was gawd awful. Horrified, I grabbed the tiny SUV and headed to the laundry room sink to mix up a bucket of bleach solution to plunge it into. As I crossed the kitchen floor, I saw my beautiful seafoam-colored rug had a straight, regularly interrupted stripe on it. On closer inspection, I could see the miniature tread marks of the tire of a small vehicle that had just completed a safari through the laundry room. Next to the cat box. Through a pile of cat sh*t. For a good mile. Into the master bedroom.

Oh it's good to be home. Sometimes I just have to laugh.

Labels: , ,

Monday, August 04, 2008

A Glance Over My Shoulder

Talking about the convention has been like attempting to create a beautiful mural on a cathedral ceiling with a miniature paintbrush. I find it impossible to describe everything to my satisfaction here, but I hope I was able to make those who were not sitting by my side feel like they were. It was an intense experience I do not regret and will remember my entire life.

To wrap things up, I'll share some photos. Enjoy.

Labels: ,

Saturday, August 02, 2008


catharsis [kuh-thahr-sis]

1. The purging of the emotions or relieving of emotional tensions, esp. through certain kinds of art, as tragedy or music.

2. Medicine/Medical. Purgation.

3. Psychiatry. (a) Psychotherapy that encourages or permits the discharge of pent-up, socially unacceptable affects. (b) Discharge of pent-up emotions so as to result in the alleviation of symptoms or the permanent relief of the condition.

You thought I was done with the convention, didn't you? I have been putting off writing this last post as long as humanly possible before the memories fade. In a way, I wish they would. I don't want to think about my last day in California. Not at all. It's eating at me, though, so I must close this chapter and move on.

The hotel felt like a ghost town on Sunday morning. The majority of the convention attendees went home the night before. We checked Erik into his program and walked to the ballroom for our last continental breakfast and morning announcements. Dr. Helen Tager-Flusberg came to the podium and gave us an overview of what was taking place at the International Professional Conference on Williams Syndrome following our convention. Researchers from the United States, Canada, Germany, and Japan would be gathering to share information on medical, cognitive, and neurological components of Williams syndrome. Dr. Tager-Flusberg went through a lengthy outline, during which some of her wonderfully dry humor emerged, explaining the genetic research being done on people with WS. She reported that "knockout mice" were being engineered which were missing just a small portion of the deleted genes in WS to determine the purpose of each gene in human beings. She also explained that the brains of individuals with WS are being imaged via PET/CT/MRI to analyze structure and function. She mentioned the ethics of discovering a cure for Williams syndrome and said that although this is a controversial subject, eliminating the sometimes deadly health problems that accompany it is less so; therefore, that is where some of their attention is apparently directed. Although I considered myself enlightened and open from the week's experiences, I doubted I would ever find myself standing outside a laboratory protesting a cure or prevention for Williams syndrome. Then again, you never know. Give me a couple decades to think that one over.

And that was that.

I said goodbye to new and old friends, and we walked over to pick up Erik for the last time. I hugged the volunteer who seemed to focus a lot of attention on Erik during the week. She seemed surprised by this gesture, but I refused to slip into my usual self-conscious, shy mode. She was getting a hug, dammit. She should consider herself lucky I didn't kiss her squarely on the mouth after all of the work she did. She smiled and motioned to a chair heaped with beautiful handmade blankets and quilts made by Project Linus, a group of volunteers who "provide love, a sense of security, warmth, and comfort for special children through the gift of new handmade blankets and afghans lovingly created by 'blanketeers'." I chose a colorful fleece blanket with chunky, fringed edges, and we left the child care area for the last time. Erik went back to the room with my parents, and Brian and I sat in the restaurant downstairs and enjoyed appetizers, lunch, and a gooey chocolate sundae, after which we headed to the deserted swimming pool, rolled up the legs of our jeans as best we could to expose our pale skin, and relaxed on lounge chairs in the sun like true Oregonians before heading back to the room.

My brother John and his wife Su joined us for an early dinner. Our group walked to Joe's Crab Shack. The noisy, party-like atmosphere inside the restaurant seemed to bother Erik's ears, and I was pleased to see they had outdoor seating with large tables. Erik and I headed for the adjacent play area, and he actually climbed up onto the equipment with some encouragement. However, I felt my mood slip slightly when I witnessed a little girl get in Erik's face and repeatedly ask him to say things to her. He merely stood there and silently stared at her. I realized I was more sensitive at that particular moment, but we had been in the real world for 20 minutes, and I was already having a hard time adjusting. Our family was once again a freak show already.

We enjoyed our meals and walked back to the hotel, where we sat around a table in the downstairs restaurant and ordered cocktails from the bar. One of my favorite young men with WS wandered by, and he beamed when we waved at him. He joined us at our table. We ordered him dessert as he ducked to avoid his father, who was craning his neck looking for him as he cruised the lobby. I did not have a chance to talk to this young man at length during the convention, but he was obviously a very happy person, which made me smile and drew me into his presence many times. I was surprised to find that our discussion eventually stalled on the topic of vacuum cleaners, an apparent obsession of his, and we discussed canister vacuums and suction. He was very pleasant to talk to, however, and he told us his desire to eventually own a top of the line Oreck vacuum cleaner. He then shared his excitement regarding his plans to ride a real fire truck for his birthday. I smiled, but my heart began to ache.

He was turning 30.

My mother eventually made the first move to leave. For some reason, everything I feared had suddenly become visible inside of the precious person sitting across from me. The anxiety. The difficulty with social skills. The obsessions. Even some manipulation. I shook his hand and told him we enjoyed his company, but he expressed his annoyance at the fact we did not buy him dinner and were leaving so quickly. I fought off the guilt I felt and the urge to fix everything, politely ended the conversation, and turned my back. I quickly asked my father to take Erik back up to the room in the elevator. I even missed the opportunity to say goodbye to my little brother and his wife. Instead, we seemed to scatter, and I went directly to my mother's side.

I looked at her and said as nonchalantly as possible, "Well, that was pretty hard."

She said, "You think?!"

With that, she validated all of the agonizing ache that had settled into my chest.

Her hand found mine as we found the familiar, nondescript metal door that hid the stairs. We walked up seven flights, hand in hand, as we cried hard and washed from us all of the emotions that had been suppressed for days under our smiles. I knew that there was no stopping it this time. Actually, it was a relief to see somebody else cry for once.

When we arrived in the room I went straight to that Project Linus blanket lying on my bed and crawled underneath it, pulling it tight around me, crying harder than I think I ever have in my life. Emotion seemed to come from me with such violent force that I felt as if I was going to die in the process. I physically HURT. My mother comforted me for just the right amount of time, said just the words I needed to hear and nothing more, and then left me alone, confirming she knows me and my heart very well. The door shut behind her, and I found myself only sobbing harder. I heard those voices that have been silent for so many months in my head begin their chatter, perfectly clear above my pathetic bawling.

There is no end in sight to Williams syndrome.

Your baby never has been and never will be normal.

People are going to call your child a retard.

Your child will always be childlike.

There is no rest for you.

No relief from this agony and perpetual worry.


By the time I was no longer alone, I had pulled myself together, for the most part. The had tears dried, the voices had ceased, and we all got settled for the night. I dozed off and on, despite taking something to help me sleep and put me out of my misery. By the time the alarm sounded and we had to drag our belongings downstairs for our trip to the airport, I felt as if I had slept mere minutes.

But we were finally going home.

Labels: ,