Erik Quinn: The Heart of a Family: August 2007

Thursday, August 30, 2007

Insomnia Update

I completely survived today! Go, me! Oh, sure, I'm a rambling idiot due to lack of sleep, but I'm still smiling. I'm sure my glass of merlot is helping.

Tomorrow is a big day. We have a hippotherapy appointment at 11, come home to eat lunch, and then head back to Erik's school across town to meet with his new teacher, set up a bus schedule, and check out the classroom. I plan on working somewhere between then and Saturday morning. I just may fire up that margarita maker this weekend.

The best part of my day today was discovering that the orange pile that sat on the freshly-shampooed living room rug while I worked was cat vomit, not excrement as I originally suspected. Seriously. Best part of my day. I called Brian and let him know he could pick Erik up from my folks' today, as I had work waiting for me on my computer, I was too tired to drive, and I had some stain removal tips to acquire on line. Oregon State plays for the first time tonight, and there is an adorable, blond 2-year-old and a hot, Hawaiian style pizza with skinny crust coming my way soon. Oh yes. I am officially getting into my The storm is hitting now, and hopefully it will be over before bedtime.

Today didn't turn out too bad! Wish me luck tomorrow.

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Nocturnal Wandering

It's not even 3 a.m. yet. We now have flashes of dry lightning illuminating the dark rooms of this house. Erik cried off and on until 2 a.m., and I eventually found him standing in the corner of his room sobbing and repeatedly muttering "fireworks." I put him in bed with us, which I never normally do, but now I can't sleep. I listened to Erik's heaving, sob-filled chest slowly relax and his breathing deepen before I got out of bed and went to lie down in his. I finally gave up on sleep, and here I am.

I don't know if I can do this another night. The weather report doesn't look good.

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Wednesday, August 29, 2007

A Scent of Hell

Since we moved into this house three and one-half years ago, we have called the police four times: For (1) a yet unidentified amateur sniper firing a shotgun three times into the front window of the house next door, (2) a young, furious drunkard in the same house screaming bloody murder at 2 a.m. and plunging his limbs through yet another of his own windows because he was locked out, (3) a Marilyn Manson lookalike in black attire ranting and raving for hours and attempting to sneak water from our house before holing up in a cave across the street, and, tonight's excitement, (4) FIRE. Ah, life in the country.

Tonight the thunderstorms came one day early. There is a "red flag alert" for tomorrow, which always sounds like "double secret probation" to me. They were wrong about the timing. I was working at my desk around 7 p.m. when the scent of smoke rolled in, probably from a distant fire sparked by lightning. The sun began to set, and the sky blushed a deep orange/pink. Bugs began to fill the air in some sort of freaky, desperate air dance, and I could suddenly hardly breathe, even from the place I found to sit on the porch outside. A curtain of darkness soon came in with a bizarre, hot wind, and cracks of thunder began to shake the house after blinding bolts of lightning began. I sat down in a chair on the back porch and saw a thick, jagged, blinding bolt spike horizontally across the sky in front of the mountains and veer towards the earth. Brian joined me on the back porch, and I explained what I saw. Shortly thereafter, he said, "I see flames." We stood and walked to the far end of the porch to witness orange and yellow fire shooting up around a ponderosa pine above a dark, scrubby line of junipers and sage. We called 911. I felt a little sick to my stomach, as I knew if it didn't rain, we could be in real trouble. Everything was as dry as death. In addition, a car had stopped across the street, and a stubby fire engine soon stopped behind it for reasons we never did quite determine. They had apparently also called 911, and there may have been yet another strike there. The air was soon filled with weird, white noise followed by a barrage of giant raindrops. The gutter next to me began vomiting gallons of runoff from our steep roof. The flames across the street quickly died, and the silhouette of the victimized tree went dark. Everything was soon soaked.

Erik is still crying, and there isn't a thing I can do for him. I turned on his Veggie Tales CD and tried to explain sirens and thunder, but the thick wall that is WS remains between us in situations like this. Logic does little to soothe away the type of anxiety he is manifesting, and explaining relaxation techniques to a severely delayed 2-year-old seems ridiculously premature, although I still try. I laid by his side in his little bed and talked to him, but he just sobbed.

Uh-oh. More sirens. I had better go check on him.

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News at Eleven

This weekend when Brian was hiking Erik a toy football, it went whizzing by, and Erik said, "I missed it!" Brian and I both stopped in our tracks and looked at each other totally surprised. He has a lot to say these days with "No want it" and "I want-___- please-okay" being a couple of his favorite phrases.

The big news is that he is really picking things up in his occasional days spent at daycare (besides germs that almost kill me). He has napped for this woman every time and Monday actually ATE BROCCOLI AND CARROTS. You may remember that I call Erik a "cookievore." Once I overcame a slight twinge of jealousy, I was so thankful! Since he has gone to this woman's home with the other children, he has successfully napped here once again. Yesterday I bit the bullet and put a little ranch dressing (oh, how I miss ranch dressing) and some quartered baby carrots on his plate at lunch, and he ate them with only a little coaxing. I almost fell the freak over. For his morning snack, I had given him a couple Nilla Wafers and milk, which is something I rarely allow, and I'm thinking that perhaps I need to remove the stick from my backside and relax a wee bit. It paid off! I am learning a lot from daycare, too!

Erik is retrieving his step stool so he can stand at the kitchen sink now, and I sometimes put warm water and bubbles in front of him to play with. Oh, sure, I mix in a couple dirty cups now and then for him to wash, but he doesn't seem to notice or mind. He ran inside last night when I announced it was bathtime (he usually sobs when it's time to come inside) and has very quickly and quietly lowered himself into the bathtub when I turned to get a towel in the last couple of weeks, diaper and all. That boy loves being in the water.

Our IFSP approaches on September 10th, and Erik will attend school and likely take his first school bus ride the very next day. I'm trying not to be a wreck, but I am anyway. My mother told me yesterday that she was a wreck when we went to school for the first time, so she didn't see why I shouldn't be. That made me feel a lot better. It's funny how my time revolves around Erik progressing and succeeding, but when it actually happens after all of that work, it's so frightening! I'm a happy wreck these days.

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Tuesday, August 28, 2007


Stacey, my ex-neighbor, whom, strangely, I have never actually met in person and just recently met through this blog, tagged me. Thank you, Stace, for including me in your first tag, and to Heidi for introducing us. To everybody else, if you would like to participate, consider yourself tagged.

What were you doing 10 years ago?

I was lonely. I was also in the process of purchasing my first house and moving out of my one-bedroom apartment that was located in a building that smelled like feet and onions. My new home was a tiny, 3-bedroom house with blue vinyl siding and a nice yard filled with wild rosebushes, day lilies, and willow trees. I still drive by the place almost on a daily basis, and even though where we live is much nicer, I will never forget the feeling I had the day I turned that little gold key and stepped inside. I remember standing there alone in the quiet for a few minutes and enjoying that moment, knowing it was important to me. I sure miss that little place.

What were you doing one year ago?

I was planning Erik's second birthday party and settling into my fairly new transcription job at home, happy at last to be out of an office and away from urology and the wonderful world of prostates. Things were definitely looking up. I had Erik fitted for orthotics, and once they were on him, trips to the store were never the same. My little boy pretty much woke up one year ago.

Name five snacks you enjoy.

Weight Watchers giant cookies and cream ice cream bars, baked Doritos and salsa, Laughing Cow cheese on whole-wheat Ritz with tangy, green grapes and a giant glass of red wine, those nasty, greasy, fried jalapeno and cream cheese wontons at the restaurant down the street (Ohhhhh yesssss!), and Ben & Jerry's Cherry Garcia (it's a good idea to stay away from me if I am eating that particular snack). Hey, at least I started out healthy.

Name five songs you know all the lyrics to.

I can't state with certainty that I know all of the lyrics to five songs. Erik knows more than I do. Here are some songs I know well: Anything by Gwen Stefani and/or No Doubt, ballads by 1990s hair bands, "Elmo's Song," "Happy Birthday," and, of course, all of the songs I have made up for my son over the years. I mean, who can forget such homemade classics such as "We Brusha, Brusha, Brusha" or "There's a Skooby in the Bucket?"

Name five things you would do if you were a millionaire.

I might enroll in medical school so I can be the only freaking physician specializing in Williams syndrome in this particular region, hire a full-time therapist for Erik, quit the ridiculous medical transcription field and write full time, buy my great-uncle's old apartment in Paris so I could stay there whenever I felt like it, and drink good wine all of the dang time. Either that, or invest in a few good electrolysis sessions (getting old bites).

Name five bad habits you have.

Using my sarcasm/dark sense of humor as a defense mechanism without thinking of the consequences, occasionally pretending I smoke cigarettes in a social setting, skipping church for a year or two at a time, not returning phone calls even though I intend to, and losing my temper too quickly.

Name five things you like to do.

Cook/bake something new, go out with friends, watch trashy movies, write, and sleep without dreaming.

Name five things you will never wear again.

Anything sleeveless, liquid eyeliner, thong underpants, a bridesmaid's dress, and maternity clothing.

Name five favorite toys.

My iPod, computer, steam hair rollers, food processor, and margarita maker.

Where will you be in 10 years?

Hopefully, the urban sprawl will have overtaken us and we will be living comfortably elsewhere in town in a home with a private place for our growing, increasingly independent boy, who can live with us for as long as he likes.

I hope that we will all be happy.


Sunday, August 26, 2007

New Beginnings

For once I woke up this morning not feeling like a frumpy old lady hiding in baggy clothing. My new attempt at taking care of myself has paid off in three months. Big time. I am unable to state I simply reached my weight loss goal anymore, as I have lost much more than I imagined I could or would. Once I set my mind to it, I lost a grand total of 30 pounds through good old-fashioned diet and exercise. I am a walking Weight Watchers advertisement. When one of my friends suggested I join with her three months ago, I never imagined my life would change like this. I don't do meetings, so I signed up on line and have been tracking myself. The eating disorder I have been babying for years that has kept extra weight on my body died a surprisngly quick death. All I needed was some sort of direction. Some sort of battle plan.

To celebrate, Shaena accompanied me to the neighborhood tattoo/piercing parlor Friday, and I chose a small, bejeweled stud for my navel. Even through I have four holes through my ears, they were placed eons ago in a jewelry store. I don't recall setting foot in a tattoo parlor before. I sat on a sparkly red bench in the sunlight streaming through a window draped with plastic stars while a couple very quiet, hip-looking, nervous young women stared at me, likely wondering what in the Sam Hill a woman my age was doing in a place like that. A very voluptuous, liberally studded young thing invited me back into a room with many windows and had me lie on a table that brought back brief but unpleasant medical memories. The young things looked on through the doorway as I lifted my shirt slightly and she examined my stomach. She stood me up in front of a mirror and marked on me with a purple ink pen before inviting me to relax again on the table and placing drapes around my freakishly deep belly button, talking nonstop through the whole procedure. I am unable to tell you exactly what happened next, as I decided to stare at the ceiling. Shaena stood at my side and watched clamps placed on my flesh, which I found quite uncomfortable. I was told to take a deep breath in and then slowly exhale, at which time she apparently pushed a giant, hooked needle through me without any sort of warning (or anesthesia) whatsoever.


I felt a strange rush of warmth to my stomach, as if I had just consumed a shot of tequila. I pondered exactly what was happening to me physiologically. My body seemed to be under the impression I was wounded, but the sensation quickly passed, and I stood up. Done.

I was off to a fajita dinner with unbuttoned britches.

Today I turn 37. I feel pretty good about that because I feel like I'm healthy once again and I'm ready to let the world see me just a little more. I am over 10 pounds lighter than when I became pregnant and weigh about what I did when I walked down the aisle with sparkling hopes and dreams from the implied promise of a perfect life waiting for me. In a way, I feel like I'm starting over and stealing some of those hopes and dreams back. My innocence is long gone now, and I am old enough to know that life isn't as perfect as I once hoped. I can accept that, for the most part. At least I'm learning to.

I have new strength and a pretty, new battle scar.

Bring it on.

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Friday, August 24, 2007


Wednesday, August 22, 2007

Open Arms

So now I come to you, with open arms
Nothing to hide, believe what I say
So here I am with open arms
Hoping you'll see what your love means to me

-- "Open Arms," Journey (1982)

This is just a note to express my gratitude to everyone who e-mailed me, called me, and commented on my recent post. Even some very friendly lurkers spoke up for the first time! Welcome! In fact, the response was so incredibly overwhelming that it was not possible to spend the time I wanted to in order to respond to each and every one of you the way I would have preferred. This will have to do for now.

I suppose the mixture of emotions in my heart now is to be expected in this long process. However, blogging brings a very interesting twist to it all. Since I have been writing my feelings down here and so many people are reading them now, I am truly experiencing some degree of guilt about what I am expressing. I know some of the things I write many people would personally keep to themselves. There is also the fact that I am developing a teensy-weensy case of stage fright. For those of you who have never met me, just two years ago I was nearly too shy to go to the grocery store. I actually dreaded the social interaction! One of my friends will insist I look quite confident in a nerve-wracking situation, but I wear a triple coat of pit stick before speaking to strangers or giving a speech. The irony of what Williams syndrome means socially in my own child is not lost on me. Ha ha. Very funny, God. There is no longer the remote possibility I can successfully slip by unnoticed in a public setting when Erik Quinn is with me. I suppose that is also true on line. After all, he is the reason you are reading this now. There would be no blog and very little of my writing without him. I would still be hiding at home.

I have thought long and hard about what to say here. There is no way I can really voice the gratitude I feel for all of your support and encouragement without sounding like I am reading the lyrics off the back of a Journey album cover, so I will cease and desist for now.

Thank you.

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Time Saving Recipe #1

These are the easiest rolls to make EVER. Last night I made white chicken chili and found this "recipe" to serve with it. Totally delish, and nobody would know you cheated.


4 cups Bisquick
one 12-oz can of beer
1/4 cup sugar
2 tsp sesame seeds

Preheat oven to 425. In a large bowl, dump the baking mix, sugar, and beer; mix well. Spoon equally into 12 muffin cups that have been coated with nonstick cooking spray. Sprinkle with sesame seeds. Bake for 15 to 18 minutes, or until golden. Serve warm, or allow to cool slightly, then remove to a wire rack to cool completely.

(195 calories, 6 g fat, 1 g fiber = 4 WW points)


Tuesday, August 21, 2007


I can't speak for my son, my husband, any member of our families, or my friends. I speak for ME here. I will never intentionally pretend to know how anyone outside of this particular woman named Nancy is feeling.

Today I asked myself today why I continue to keep a web log. Something is changing.

The answer: I blog because it is socially expected that I smile sweetly in public when I feel like screaming, sobbing, or assaulting someone related to my emotions that stem from the horribly cruel birth defect that my beautiful son happens to have. I have very successfully put on a brave face through therapies and children's birthday parties and parent groups and doctors appointments and IFSP meetings when it was the last thing I felt like doing. I believe that I have jumped through the correct hoops at the correct times, and I have acted appropriately and ladylike. I have prayed the appropriate prayers, and I think I'm a pretty decent mother. I have been invited to be on boards and attend meetings outside of what is normally expected for a special needs parent. I don't believe I have embarrassed anyone. I have even kept my tears to a minimum lately in order to minimize any discomfort I may cause the people around me.

However, these emotions and thoughts have to go somewhere.

If you see me on the street, it is very possible that out of politeness and in the interest of saving your valuable time I may serve you up a white lie and report that life is a beautiful bowl of cherries when I feel like curling up in my closet under a blanket for the rest of the day. Thankfully, because I have this outlet, I get up and face this big, old world every glorious day. I'm not alone. I do this just like all of the mothers I know who wear similar shoes. If we didn't, we would be missing out on a lot of what is right and what is beautiful in each day. You just have to wade through some ugly to get there, and the right and the beautiful, as it turns out, are even more wonderful after that.

Unfortunately, a lot of what I say isn't pretty. It's not supposed to be.

When nobody knew I was writing here, I wrote anyway. At this point, there are more people reading my thoughts here than I would have ever imagined would have bothered with me. That's really frightening sometimes. The side effect of this is a new sense of shame and guilt when something un-pretty comes out of my head. I have come to love many of you who come here. Never in my wildest dreams did I imagine that would happen. All I can do is warn you that you will never hear lies from me here, and I hope that I do not upset someone with my own thoughts. I am not sure what to do with these new feelings besides making this journal completely private from this point forward. I'm not ready to do that. So I just issue the warning that this is my journal and these are my raw thoughts. They are true, and I want to put them down so that, God willing, I can look back on my life and see how far I have come as a mother. I am so incredibly lucky to be a mother.

Okay, at this point, Ted Kaczynski's manifesto was more succinct and made much more sense. What I'm trying to say is this: You are witnessing a woman grieve. You are seeing someone bleed gallons of sticky, copper-scented blood. You are watching someone heal twisted, ropy scars. Some of you have no idea what I'm feeling, but you come here anyway, and I always attempt to take you with me on this ride through my writing. In this sense, my blog has turned into something fabulous, because I never feel alone. Ever. There are those of you know exactly how I feel and have similar scars. Frankly, I am hurting right along with you, and, dammit, I truly believe many of us are making progress. It's not a pretty process. If it is, then something isn't quite right. That's my opinion.

This is the most incredibly personal thing I have ever dared to do, and it's only because of the wonderful feedback I have received that I have kept baring myself in a very public forum under a very bright spotlight. Much of what I write is happy, but much of it is not, and I will not apologize for it. That wouldn't be fair to the people who come here to read my true thoughts or to myself. There is poison inside of me, and when I write, I feel normal again. That's a pretty amazing gift in a life like mine. I have always grappled with my struggles through writing. After I am finished typing here at my desk, I am almost euphoric. I feel like I have just been violently ill but know I will not be sick again for some time. I then get up and go on with my daily life, and I am thankful for who I am and what I have. It is good. I am a fairly happy person on most days. I pray that you can feel the same emotions if they apply and can let them ebb and flow just like I do in order to heal and move on. I don't want to depress anyone or cause them sadness. Maybe I'm completely flattering myself, and I haven't made a dent in one single moment in one single day of one single life. You know what? I'm really completely okay with that. However, I have a knot in my stomach and would never want to hurt anyone with my words. This just needed to be said. If I'm doing more harm than good, I'm hanging it up and will continue to write--in private.

Whatever happens, thank you for loving me, scars and all.

By the way, I love you, too.

-- N

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Sunday, August 19, 2007

Breaking the Law of Averages

He came toddling out of his bathroom, deftly maneuvering around the toys strewn over the shiny floor in a way that would have made his therapists proud. In his strong hands was his little green and blue plastic stool. He rounded the kitchen island to where I worked and put the little step in front of my heavy, pistachio-colored mixer. Amazed at what he had just accomplished for the very first time on his own, I nudged the step with my toe a couple inches to where he could best see me work. He confidently planted his brace-sturdy foot and stepped up, grabbing the counter firmly and craning his neck to see over the rim of the shiny bowl. Almost. Not quite tall enough yet.

I read the article again today. My brain finally absorbed that one sentence. The one that stated that what is written on my child's chromosomes means his lifespan would be, on average, 50 years. From all I know now, this was not a surprise to me. However, seeing this in print written by a stranger made me inexplicably angry, which was a complete surprise to me. I suppose I had never dared ask anyone, even the geneticist, that particular question before because I didn't want to hear it. Now I had the answer, and I didn't want the damn thing.

I coaxed the sticky honey from the measuring cup with a rubber scraper, making a ridiculous show of it for his benefit, like Tom Cruise mixing drinks for the beach bunnies in that old movie. I found myself humming "Kokomo." I held the measuring cup high in the air and let the honey drip down like a thick, gold ribbon into the bowl. Up and down. Up and down. He laughed and said, "S'mixer!"

It's not like he has serious health problems yet. His upcoming echocardiogram will hopefully soothe my blooming fears. Hopefully. I hate not knowing exactly what missing an essential component in his body will mean as he ages. Looking at the big picture, I can see that we are the lucky ones. There are some beautiful kids with this who are very ill. I should be on my knees thanking God we have it so good! This kid could very well live to be one very friendly, old fellow.

I pushed the stubborn switch on the mixer to the right and watched the cage-like attachment whirl to life. The motor's growl made him jump at first. After that, he was very calm and interested. I stooped to pick him up in my arms and held him so he could watch the separate ingredients swirl into a thin, sweet mixture. After they were adequately combined, I put him back on his step and tipped my plastic bowl to sprinkle the dry ingredients into the sweet batter to thicken it.

Besides, even if he was "average," which he doesn't seem to be, that's half a century. If his kidneys or cardiovascular system did magically fail at that milestone, I'll be 84 years old. I might not even make it that long. Maybe we will both go at the same time, and I would never need to live a day without him. Living without him would be like living without my heart.

I unlocked the bowl from the body of the mixer and turned to spoon the batter into the mini muffin cups that glistened with nonstick spray under the kitchen lights. Erik traveled with me with his step to watch this and actually obeyed my instructions not to plunge his thick fingers into the batter for once. He just watched quietly and let me think.

God, I hope I never have to bury my son.

I opened the oven behind us, reminded him that it was very hot, and slid the wide baking pan full of cups of batter into the heat. The door shut with a clunk, and I pushed the button on the console to illuminate the oven's innards so he could watch the muffin tops grow dull and swell. Looking out the kitchen window, I saw his baby swing gyrating in the wind and rain as if it held a hyperactive ghost, and the little yellow straps that used to go around his tiny body hung limply. No more baby.

I'm almost 40 myself.

I returned the containers of dry ingredients to the baking cupboard above the oven and pushed a damp sponge across the counter tops, smudging tiny drifts of flour dust into drying, annoying swirls. I washed the sponge and began scrubbing again until they vanished. He lost interest in my new chore without any spinning equipment and disappeared, off to find another rainy day adventure.

Fifty's simply not good enough.

I slowly filled my lungs with the warm air of the kitchen and the undeniably cheerful scent of grated lemon peel. I flipped the lights off and followed him around the corner into the unknown.

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Saturday, August 18, 2007

Paper Jockey

Glancing at the white parent notebook we were provided by early intervention around the time Erik was diagnosed, I noticed for the first time that it looks suspiciously as if it is pregnant. Its metal binder is now bulging with all sorts of papery goodness. Honestly, I had no idea how much paperwork having a child with special needs would generate. I am quite positive that our family is solely responsible for the destruction of thousands of acres of trees used to manufacture the tomes necessary to keep us informed, updated, and instructed on how to best care for our son. Our kid automatically came with a manual, a newsletter, fundraisers, feeding instructions, and physical/speech/occupational therapy instructions. I collect paperwork on each individualized family service plan (IFSP) and save every newspaper article that relates to WS in any way. I previously shook my head in disbelief upon hearing stories concerning elderly eccentrics who were crushed to death under stacks of newspapers in their cluttered apartments, undiscovered for weeks. I can quite honestly understand how that might occur now. I have only been at this a year and change, and my stack grows daily. Months ago, I cleaned out Erik's closet shelf, which housed all of the books and paperwork we were provided at the hospital pre-diagnosis, as none of it seemed to apply to our family and triggered depression in me, and I sent it all to a speedy execution in our rusty burn barrel. In its place are stacks of books on special needs, developmental delays, speech, fine and gross motor skills, bilateral brain half stimulation, and Williams syndrome. I am now a freaking walking library of information, and I have only gone through half of it all. I failed to mention our growing video collection. Our den has several copies of A Very Special Brain and Growing Up Different, which I occasionally lend to curious friends and family. This doesn't include the bottom drawer of my desk in which there are reams of insurance documents. We receive them weekly relating to doctors' visits and our weekly physical therapy sessions. If I don't keep up with them, the ominous stack of white envelopes with the glossy windows accumulates by the phone and eventually spills over onto the kitchen desk.

I guess my point is that it is quite possible to feel utterly overwhelmed by the waves of incoming paperwork, be crushed by it, and lie undiscovered for weeks underneath it all. Most of my collection is put away on the top shelf, behind a closet door, or in a closed drawer so it isn't staring me in the face 24 hours a day. It is overwhelming at times. Our next IFSP is scheduled for September 10th. In addition, I will be attending a class entitled The IEP Dance, Learning the Steps this week, where I will likely collect more reams of paperwork instructing me how to successfully complete yet more paperwork as we begin our interaction with the school system. Personally, from what I understand, I would call it less of a dance and more of a fist fight. I already feel a little anxiety percolating in my stomach about this, but we have a couple full years to prepare for it all. I just have to remember that it's okay to feel a little nervous and overwhelmed (who wouldn't?) as long as I can close the drawer on it all occasionally and wrestle with my son, tickling him until the choppy, high-pitched giggles come pouring from him. You may remember me mentioning that little log cabin with the red and white gingham curtains in my daydreams where Erik and I used to go to escape the therapists and doctors at the beginning of this journey. Although the place is mostly shuttered and a little musty now, we still go there occasionally to bake banana nut muffins and lie on the braided rug in front of the fire. In those daydreams, I never once had the desire to open the curtains to discover what was outside. This particular daydream was an essential part of my survival in those early months. If there's one thing I have learned, it's okay to keep the curtains closed from time to time. Besides, I suspect if I had yanked them open to see what was behind them, I would have likely seen giant snowdrifts of paperwork.

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Wednesday, August 15, 2007


Funny. Nobody seems especially interested in assisting a woman on the brink of death today. I began to suspect I had a kidney infection as I began spiking a fever today and developing sweats. I called my gynecologist's office, and the nurse said that nobody could see me but that I was welcome to visit the hospital laboratory to drop off a urinalysis. She then informed me that it would take up to 72 hours for the results. Frustrated, I called the clinic where my primary care provider is located. I normally avoid that place like the plague, as it is my old place of employment. They said they would be happy to see me on Monday. As I have felt like Gravy Train for nearly a week now, I felt my emotions began to seep to the surface, voiced a brisk thanks but no thanks, and hung up the phone. My next option would be sitting in our urgent care center with Erik. The last time I did this, it took a full four hours to be seen. Desperate, I loaded Erik into the car and we visited the hospital laboratory, where my anger was quickly extinguished by the surprisingly delightful, helpful women at the desk who seemed to fall in love with Erik, gave him stickers, and actually cared about my plight. Erik and I retired to the laboratory lavatory, and I completed my urinalysis. He was such a patient little guy through all of it, and I felt so bad for boring him to tears all week thus far that when we arrived home I slathered him in sunscreen and let him push his dump truck around the property for a half an hour. There was no work for me to do today, so I relaxed on the porch.

It's weird, but I actually feel better. Maybe the Tylenol is kicking in. I suppose it will be nice to know my guts aren't frying, too. Just a mere 72 hours until I find out. I might as well be in a covered wagon on the Oregon Trail with this kind of health care at my disposal.

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Tuesday, August 14, 2007

Death Becomes Her

Erik is doing exceedingly well at daycare. He has gone twice now, and I was amazed to hear that he took naps when instructed, something he seems unwilling to do at home. He loves the children there and talks about them all by name.

The bad news is that I am still feeling very ill. For the last six days, I have felt completely fatigued with a break here and there of feeling like I was recovering. False alarm. The sore throat I had came and went within 24 hours, but I remain so incredibly exhausted that performing my daily routine and an afternoon/evening of work is becoming more than I can manage. My parents are away this week, so I must work half time around Erik's naps and the time Brian is home, and I am simply spent. I planned a trip to the craft store with Erik this morning to begin gathering components for the decorations for his birthday party in October but barely made it to pick up my work and back home before collapsing. Loading and unloading my child from the car and walking him in and out of the medical center while juggling correspondence and audiotapes took every last bit of strength I had left. I am now unable to complete the daily morning workouts I have mastered over the last four months and find myself under a blanket on the couch instead wishing for a speedy demise.

Erik remains terrified of the sound of sirens and sobs inconsolably if he is in bed when the sound of them fills the evening air. Since the surrounding landscape is seemingly aflame every ten minutes, this is a common occurrence. I spent some time lying in bed with him this evening trying to distract him, talking of our visit tomorrow with our neighbor. My neighbor's 18-year-old son leaves for Marine boot camp Sunday, and she will visit us tomorrow, undoubtedly arriving in the sputtering golf cart with Max, the wiener dog, for Erik's benefit. I anticipate serving bloody Marys at an unholy hour and dispensing many soggy, genuine hugs. I hate to say it, but sometimes Williams' syndrome has a gorgeous silver lining. I will never need to know the pain or anxiety of watching my baby boy leave for military duty.

I called a number in the phone book that correlated with the name on the trucks speeding down the private drive on the back side of our property (see previous post in which I mentioned screaming at the top of my lungs at the work trucks traveling 85 mph). I left a voice mail respectfully requesting they slow their pace, as I have a 2-year-old who toddles around our property and was concerned about his safety. Today the stream of trucks passed by at the almost ridiculous speed of a somber funeral procession, and I was taken aback. When I related the story to a visiting friend who stood at my window watching them pass, one of the workers apparently extended a rudely stiffening middle finger seemingly right on cue, aimed directly toward the back window where I sat. That's it. This is war.

If this feeling of exhaustion does not pass by next Monday, I will get blood work done. Something just isn't right. At this rate, if I have to kick somebody's ass, I will need to hire a general contractor to do it for me.

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Monday, August 13, 2007

I'm Not Dead Yet

For the last week I have been plagued with gradually increasing fatigue, the likes of which I have not known since my pregnancies. It soaked into all of my bones and eventually toppled me into a pile on the love seat, the place I normally go to die quietly. I spent the majority of the weekend there under a blanket watching trashy movies. I managed to go about my duties during the week, including a business lunch and an outing to the martini bar, but I felt something was horribly wrong. I made a mental note to call my doctor and have blood drawn to make sure I wasn't the next in our familial line of women with a fizzling thyroid. Yesterday I awoke with a slightly sore throat, and my situation suddenly became very clear and much less sinister. I apparently have been fighting the germs Erik had picked up at day care one week ago. All week long he cried and shot impressive streamers of mucus from each nostril. He has taken a liking to sucking water from the straw in my Weight Watchers water jug. Since Erik continues to drool all over me daily, anyway, I thought there was no harm in that. Now that my illness has manifested itself in the form of a common cold and I have stopped fighting it, the fatigue is subsiding and I feel like me again. Erik, of course, is back to his old self.

Yesterday I got myself together and attended Dominick's 3rd birthday party. Overall, I enjoyed myself immensely, even though Brian had to leave early for his fantasy football draft meeting across town. Anything involving other children is and will likely always be difficult for me to attend. There is always an emotional hangover of varying severity hours to days later. There are some situations I avoid entirely, such as baby showers, which I will likely never again attend. I never know how a birthday party will affect me, but I am usually up for finding out. I wouldn't miss Dominick's for the world, anyway. Kathy called before the party to remind us to bring Erik's swim trunks for the Slip n Slide. I brought his pool therapy bag with us but knew deep down he would not participate in that activity, as he would simply get run over. When we arrived, I poured myself a glass of red wine and found a chair under a tree, where Erik sat on my lap and we watched the party unfold. I was able to coax him into playing with a toy monster truck and later an abandoned pile of plastic tools while the other children swarmed the play equipment and Slip n Slide. There were other 1 and 2-year-olds there, walking around like they had done so for years, which always makes me giggle but gives me a giant case of the creeps, too. They still look like walking fetuses to me. The worst, though, is the soft coo or loud squealing of babies, which remains foreign and strange to me.

These thoughts, of course, played in my mind in the background as I enjoyed the company of my friends and their extended families, which many years of events like these have made me a permanent member of. As the children whacked at an impressively fortified Curious George pinata built to withstand more force than an M4 Sherman tank, my friend Kathy asked if Erik would like a try. I almost hugged her for thinking of him but was unsure how to answer this question. Erik was in the driveway quietly playing with toys and wouldn't know if he missed out or not, but I shrugged and said that he might. My heart began to pound, as I had no idea how he would react, and I was trying this for the first time in front of a crowd. I retrieved him and placed him in front of the pinata. I wrapped his thick fingers around the broomstick and raised his arm into the air, pushing it forward, feeling the wood connect gently with the surface of the pinata. By the second whack, I felt the muscles in his arm contract and his arm move forward ever so slightly under its own power under my steadying hand. When I felt this tiny movement, I smiled. One more whack, and we were done. Erik enjoyed the cheering and applause and then went back into his own world again. I returned to watching the walking fetuses swinging sticks with ease in this slightly disturbing birthday tradition, Tootsie Rolls beginning to bleed from punched-in holes in the body of the ailing paper mache monkey. Once the candy spilled en masse from a giant crevice, I watched the other kids scramble forward to stuff candy into their pockets. Oh, what the hell. I ran forward as well, gathered a few candies, and returned to Erik in the driveway. I placed a few small pieces I had unwrapped into his palm, and he immediately turned his hand over, scattering them onto the asphalt. He returned to rolling a plastic screwdriver on the ground. I felt my heart sink but knew that I had to try. I consumed the remainder of the candy myself.

On the drive home, I thought long and hard about my friends, some of whom were holding brand new babies who slept peacefully or gurgled and cooed like all babies should. My heart swelled for them and I actually thanked God they will never have to go through what we go through on a daily basis. Even though I am horribly envious, I am now able to look outside myself and be genuinely happy for them for the very first time.

I have looked back at my survival over the last year and have determined that, for me, survival has been comprised of a few essential components. Firstly, I stick to a predictable daily routine, which provides me comfort in its monotony and predictability. I avoid situations that trigger unmanageable depression, such as baby showers, while I let myself attend others that have a more unclear outcome. If there is a negative result, I can always alter my game plan later, at least until I am ready to try again. I now take better care of myself, which includes getting fit and occasionally indulging in good wine or getting my toes/hair done. I can see now that my personal relationships are suffering greatly, but I hope that I will learn to better care for them with time. I honestly don't know how to remedy that at the moment. Right now I am still busy learning to heal but see that next on the horizon.

All I can do it attack this one gentle whack at a time.

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Monday, August 06, 2007

There He Goes...

Today was Erik's first day of real-life daycare. Brian took him on his way to work and brought him home, so I was free to relax, drink coffee, and watch soaps. NOT! I took this opportunity and ran with it. I worked out, showered, and hit the house with vigorous scrubbing and straightening. The place is gleaming! I was free to leave cleansers on the very edges of counters and toilet bowls open without fear of Erik sampling handfuls of Ajax or administering self-inflicted swirlies in the commodes. I accomplished much without setting foot out of the house today at all. My afternoon, of course, was consumed by work, and I transcribed upstairs while enjoying a warm summer cross breeze through my office until the boys arrived home for dinner. When they arrived, Erik placed Stinky Puppy, his favorite decomposing stuffed animal that never dries out, in his toy Jeep Wrangler and gave him a ride without any prompting. I consider this pretty good for a child who is only beginning to understand the concept of pretend play. Brian and I were pleased. I sipped a glass of red wine, watched the news, and cooked skillet lasagna for dinner. I boiled a tiny pot of mini-elbow macaroni with some leftover spaghetti sauce, but Erik turned his nose up at it all and ate homemade bread instead. I was less than satisfied with this but was so happy to see his sweet face that I let it go. He talked about the children he met at daycare, mentioning each of them by name. He also apparently decided not to fill his diaper all day until he returned home and did so with great panache, confirming my suspicion he has a serious case of shy bowel. However, our child seemed happy, and Brian reported he talked about me on the way home. I believe that being around other children seems to have already stimulated him, and I have hope this will work wonders on his body and mind.

Not to mention my bathroom grout!

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Sunday, August 05, 2007

Family Resemblance

I received a very special e-mail today. The subject line read, "My son looks like your son!" I opened it and found a wonderful letter from a WS mother in Australia who watched videos of Erik on You Tube. In fact, she said he looks so much like her son that her other children were confused as to why their brother was in a video on line speaking in a strange accent! To access photos of this little boy, I joined the Australia WS forum but have yet to be accepted and see them yet. I never dreamed I would meet such wonderful people from so many different countries! It is strange their children look a lot like my own and yet it makes me feel like we are part of a giant family. HOLLA to all my friends in Australia! The map on my blog is lighting up with your energy!

My parents returned yesterday from working on one of the Northwest's biggest bicycle tours, a yearly tradition for them. They brought back a generous offering of leftover fruit and sugar cookies. I am now down over 25 pounds but made sure to sample the cookies (totally worth it). I put many of them in the freezer for Erik's birthday party in October. To put some of the fruit to good use, I baked an apple-cinnamon bundt cake and a moist apple Hanukkah cake this afternoon, and the house smells wonderful and cinnamon-y. I will send one cake to Brian's office tomorrow and serve the other after a pork tenderloin dinner this evening with my folks.

There is a lot churning in my brain right now. My mother spoke with a relative of Mary, the local woman with WS, during the trip, and she mentioned that Mary's mother, the one who wrote the newspaper article I posted earlier, speaks often about how very difficult it is to be a parent of a child with WS. I admit that hearing this took my breath away and made my stomach sink. Just exactly what was I expecting this woman to say? That with time, it all gets unbelievably easy and you don't think twice about it anymore? Maybe. In my mind, she is a supermother with all of the answers. The fact that she is human just like me is terrifying. Knowing this will be difficult forever is also a pretty bitter pill to swallow. I know the truth but facing/accepting it is a completely different ballgame and much easier said than done. Thankfully, there is nothing that says we must accept or face anything on any set timeline, and as long as I do not compromise Erik's health or happiness, I will keep my hopes and dreams alive. There are days I need to stoke the fire in this regard, but that is to be expected.

I have yet to connect with Mary or her mother but am anticipating this will happen in the near future, and I have complete faith that hearing bits and pieces about her is just one more step in preparing me to handle it all. Things seem to be falling together for me, as they always seem to do. It has been difficult hearing rumors about this family for years now. There are times when I think I should just pick up the phone and call her to get it over with, but I don't have her number. Waiting is becoming a form of torture. Hopefully my phone number has made its way to her through Mary's aunt, and she will call.

For all I know, she may be reading this very post.

Saturday, August 04, 2007


Little Things

She drew her legs up to her chest and firmly embraced her knees as she sat on the porch. The sharp sound of crickets began to rise from the grass--a pleasant sound that slowly gained momentum and threatened to become abrasive to her ears. As the sun crept lower in the smoky sky and cast grapefruit-colored light across the desert, she suddenly felt like she was drowning but was too tired to fight the sensation or talk herself out of the rising panic in her chest. Exhaustion had soaked into each and every bone, deep under a burning layer of her aching muscles. It took effort at this point to move at all.

The dinner she had once again gathered ingredients for and poured herself into preparing for her son sat untouched in its yellow plastic bowl at the bottom of the kitchen sink, mixing with warm tap water and gradually becoming a cloudy soup of garbage. They had instead filled their son's growling stomach full of random bits and pieces they had found in the kitchen without much thought at all. Tears had threatened to spill from her eyes when he refused to place any of the food she had prepared in his mouth. It had been months since he had eaten much of anything she had prepared for dinner. The cheese quesadilla she fixed for him earlier for lunch was lying in a rejected, hardening ruin at the bottom of the kitchen trash can. She remembered that when her son was born, her breast milk had transformed into battery acid in his tiny throat, causing him to yowl in agony and develop burns on his chin. He had not been able to consume that, either.

When you are in agony, the little things bring you to your knees.

The top arch of the sun finally sank behind the dark wall of mountains, and she drew in a deep, greedy breath of evening air, clearing her head again. The crickets were practically screaming now, and her head felt like it was going to explode like a rotten pumpkin. She rose from her chair and went inside to lie on the bed to await dark, numbing waves of sleep and the hope of one more morning. To her, awakening to a brand new day was like opening a Christmas gift. Every day.

When you are in agony, the little things keep you going.

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Thursday, August 02, 2007


If you ever catch on fire, try to avoid seeing yourself in the mirror, because I bet that's what really throws you into a panic.

~Jack Handey (Saturday Night Live)

I was working yesterday in my sauna of an office when my neighbor called from her car driving our direction. She was obviously quite excited about something and asked, "What's up with the fire?" Since it was hot, my blinds were closed to shield me from any afternoon heat. When I opened them, this is what I saw. As the last post contained enough profanity to last us a month, I will spare you from what I said. Because the wind was blowing the other direction, even though the fire was quickly spreading, it was headed away from our house. However, I did do a quick mental inventory of things to throw in the car in case the wind shifted. The lumbering rumble of borate bombers began over our house, casting eerie, floating shadows over the ground as they flew over and making me feel as if I was in a war movie. Brian witnessed one drop a scarlet cloud of fire retardant over the flames as he drove home from work.

It's funny because the last time my old neighborhood caught fire, I was also blissfully unaware of the orange flames shooting up through the trees less than one block away. My friend's husband called me and was surprised I was still at home. When I looked out the window, there were indeed flames snaking through the branches across the street, and soon firefighters had blocked off our little cul-de-sac, so there was nothing to do but watch and pray they knew what they were doing. I should probably look out the window more often!

This morning my throat is scratchy from breathing smoke all night, but there is only a thick, low-lying cloud of leftover haze obscuring the site of the blaze.

* Update 8:05 a.m. The wind has now shifted, bringing in choking clouds of smoke and haze. According to our local news, the fire is apparently not close to being contained, but they are still working on it. When I took the photo yesterday, it was at a mere 10 acres. It's now 200 acres! Thunderstorms are due this afternoon, which won't be helping things. So far, though, we are out of danger.

* 4:50 p.m. Fire 30% contained at 589 acres and looking good.


Wednesday, August 01, 2007

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.


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