Erik Quinn: The Heart of a Family: January 2008

Thursday, January 31, 2008

Stick a Fork in Me

Warning: The following is venting. I don't want to talk about it outside of this post. In fact, I may turn my comments off. If I do not vent, my head will explode like one of Gallagher's watermelons. This remains my online journal, and I have never nor will I ever keep anything from it that comes to my fingers as I type. If you feel like calling me or e-mailing me, please make sure you have a good diet cocktail recipe or hilarious joke ready. I love all of you. I'll be just fine. And thanks.

I refuse to lie to you. The last few days have been pure hell on earth. In fact, I am crying at this very moment, so you will have to excuse a possible lapse in my writing ability. We are snowed in today and have been all week. This will be at least the fourth day of school Erik has missed because of weather-related decisions that people living here for an entire eight minutes have made. Has anybody seen snow before or what? In fact, our city already spent the money allotted for snow removal this year on other things because we haven't had snow for a couple years, so they assumed we would not again this year. Freaking brilliant. Go home, you posers. All of you.

I am seeing some very disturbing things happening in terms of Erik's behavior. He is frustrated at being snowbound and today asked to leave the house, specifically in my car, so we could see my parents. I had to tell him no but that this might be possible tomorrow. I have been punished for this all day. I have been kicked in the stomach. I have been slapped. I have been pinched. I have been yelled at. He has thrown food that he likes all over the floor. He has destroyed his room. He has refused to do anything I have asked him to do. I had to hold him down kicking and screaming to get clothes on him and brush his teeth. He has again refused the things he loves just for the simple pleasure of telling me no. There is nothing I can do for him except take him to see anyone besides me, and he has made that very clear.

You know, this wouldn't be so terribly bad if it didn't happen hour after hour, day after day this week, but it has, and I am at officially at the end of my rope. I have read in the resources I have that this can be classified as typical WS behavior and that if I give Erik slack in terms of his outbursts that he will be "socially rejected" in the future (as if he isn't already, anyway). No pressure. In fact, I have read that a variety of studies have reported that 52% to 85% of WS children are classified as "potentially disturbed," although I am guessing there is another more politically correct term now. I have been warned about a "low tolerance for frustration," and I can see that very clearly now. I try to do the correct things as a mother, treating Erik like I would any other child and focusing on the positive, but I'm certainly not perfect, especially in this kind of uncharted territory. What sucks is that no matter how I respond to him, he continues the same behavior--kicking, slapping, and growling, punishing himself by refusing things he enjoys in order to hurt my feelings, although I try not to let it show. He yells all of the things I have said at himself within earshot and even seems to come up with things I have never said at all (Stop it! Right now! Don't touch that! Go to sleep! Don't do that!). All are negative things, despite the fact he consistently gets praise and love daily. I tell myself that I need to continue being consistent in love and discipline, even though it doesn't seem to be working at the moment, hoping that it will eventually set into his brain that I am not weak or kidding. But, God, I feel so weak. There are weeks where I have moments alone in which I find myself looking at the ceiling or the sky and saying, "PLEASE HELP ME!"

What behavior is "normal" and what behavior stems from WS? I have learned that it is impossible to find much that isn't affected by WS in some way. The low tolerance for frustration. The impulsivity. The anger. I have been told by other parents that what Erik is doing is completely normal, yet in my eyes it has an underlying flavor that is DEFINITELY NOT NORMAL. This is also completely new in Erik's personality when there was no hint of it before. Of course, he doesn't do any these things to this degree unless we are alone, so I suppose most people think I am either nuts or full of shit. I heard on the news today that Britney Spears was held on a 5150 at a psych ward, and I actually felt myself drift into a jealous little daydream. I can't help but remember when my concerns were dismissed by everybody and their dog when Erik was born, including his doctor, when I knew something was terribly wrong. Oh sure, he failed numerous hearing tests, screamed all of the time, and never smiled, but he was just colicky. There are actually people who have admitted to me that they initially doubted my ability as a mother and wondered why I couldn't hack it. I have heard this from several people, and I love their honesty (and their typical children). However, my heart hurts more than just a little bit when I hear this.

I just know that when I was a child I would never walk up to either of my parents and pinch them or slap them on the back of the head as they sat in a chair. Hearing stories from the parents of older children with WS, I relate to everything they are saying. I just know I'm not nuts.

Today I tried so hard. We read books, most of which Erik insisted he disliked and wrestled with me in order to close, destroying some of them in the process, finger painted, played with water in the kitchen sink, and made a sorry attempt to play with toys, most of which he has no interest in at all. He made it quite clear that absolutely nothing I did or tried was acceptable to him or made him happy, throwing ugly fits all the way. What makes this worse is the fact that he does not seem to enjoy typical things, so I have to think outside the box. There isn't much outside the box at the moment. Erik, I'm trying so hard, baby, but I can only do so much. I'm sorry.

Yeah, yeah, I know. Perfectly normal. Typical childhood behavior. Late terrible 2s. Ha ha. Oh, I am in for it now. Oh, yes, I have heard it all. I'll certainly try to deal with it like most mothers. I'll get right on that and try to nut up like the rest of the women around me do. Oh, and can someone tell me what I am supposed to say when I am out with a group of women, they are bragging about their children, and I feel like disappearing into the floor because I don't know how to talk about my own kid without making anyone feel uncomfortable? Yeah, the last time I tried to talk about Erik and how amazing he was, I got this: "That's so sad." I can't even talk about my own kid.

Oh yeah. I almost forgot.

Still no phone call from church. I'm not finding comfort in much of anything associated with religion anymore. After this week, I probably get to tell the church that I once loved, where I learned Bible verses as a child, where I sat in a pew with my folks over the years, where I was baptized, and where I was married at age 30, to go fuck itself with great gusto. I suppose it's time. After all, I reached out for help just a mere two years ago.

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Wednesday, January 30, 2008

Going to Rehab

I scheduled Erik with a pediatric rehabilitation specialist in April. This appointment materialized after his private physical therapist reported his body was much more rigid these days and his pediatrician, although I have a lot of faith in her, doesn't seem to know jack about WS. However, Erik's pediatrician was more than happy to refer us. When the paperwork went through, an unusually pleasant woman named Audrey called the house to set up an appointment. We were not able to get in until April, but I explained to Audrey that since we are unable to see a WS specialist on a regular basis (we seem to be living in the wrong region for that kind of thing), I would like someone to give Erik's poor old body a once over just for his mother's sake. No hurry. It's hard to know what I am supposed to be doing with little to no guidance from medical professionals in this region, but I'm following my gut. It was my gut that led me to this diagnosis in the first place almost two years ago.

I already feel better.

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Monday, January 28, 2008


We attended a birthday party for our friends' 1-year-old girl yesterday, and Erik did very well in a very crowded, noisy setting. In fact, I felt relaxed when we left and could honestly report he had a great time. He even smiled and greeted the other children. The only time I felt like screaming was when an older boy insisted on staring at Erik as I held him in my lap and fed him during the party. Now that I think about it, I'm sure Erik is beginning to look a little strange being spoon fed while we are in a noisy setting. He will not eat in this type of environment otherwise, and I take the opportunity to cram as much food in him as possible while he is distracted! He dove into the quiche and fruit salad! He does just fine feeding himself at home, although he is maddeningly picky about what he puts in his mouth.

There are eight inches of snow on the ground now. Finally. It is supposed to snow all week, and I am hoping the school district keeps things open for Erik.

Church Update: I received two voice mails from the deacon trying to assist me over the last week. The first explained that she had not received an answer back from the person she thought could help us, and the second was that she was unable to arrange anything at this point but would continue to try. I am getting the feeling that the high school girl declined to watch Erik during Sunday school. This is exactly why I feel like a problem that needs to be addressed. I spoke with Brian about accompanying Erik to Sunday school myself, but I predict I would leave church more depressed and more stressed out than ever. I have no desire to sit in that type of environment trying to be a soothing, calming presence when I am need soothing and calming (and perhaps some Jack Daniels) myself. I'm sure that once Erik attends more typical classrooms and events, I'll be more acclimated to it all, but right now it's an overwhelming, depressing challenge I am not ready to try. I am happy being immersed in just special ed for now. One step at a time. So far, this is not worth the trouble. We can teach Erik what we think is important in the comfort of our own home.

Our big screen television went on the fritz, and my best friend's husband, who is an electronics expert with his own shop, came to do surgery on it today while I played with his children. The parts we need will take a couple of weeks to arrive, so my BBC America afternoons are on hold. To entertain myself, I retrieved my copy of the recipe book called the Sneaky Chef in the hopes I can hide more vegetables in Erik's diet. I spent the morning whirling blueberries and spinach in my food processor, incorporating them into brownies (also whole wheat flour and wheat germ). I felt like dry heaving while I stirred melted chocolate and butter into the spinach mixture, but the house smells of nothing but chocolate now as they cool on a wire rack, looking like any innocent batch of brownies. I attempted the peanut butter and jelly muffins made with yam and carrot puree this weekend. Erik ate them but was less than excited about them, making the amount of work that went into them questionable. We'll see how these go over.

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Friday, January 25, 2008

New Dreams

There are some things that I will never have the opportunity to do as a mother. I spent the last two years digesting each of those losses like little deaths, and they have all hit home now. The moment we were diagnosed, I could almost hear hundreds of doors slamming shut. Opportunities ripped from me. Dreams destroyed.

However, I accept the fact that I will likely never jump up and down in a set of bleachers cheering for a son who is the quarterback of his high school's football team. He will likely never play on a football team at all. I accept the fact that I will likely never take him to the DMV to get his driver's license. I accept the fact that I will never have the opportunity to watch my son graduate from medical school. I accept the fact that I will likely never attend his wedding or have a daughter-in-law. Lastly, I am very slowly learning to accept the fact that I will likely live my entire life without being somebody's grandmother.

However, as I have watched Erik grow, I have witnessed him flinging doors open on his own, touching the people around him in a way I would never imagine was possible. He received two pieces of mail in one day this week. That's pretty decent for a kid who is only 3. He loves animals and is amazing with them. He loves music and seems to have the budding desire to create it himself. He still occasionally goes into a deliriously happy trance when he sings a new song. This week he began singing "Deep in the Heart of Texas" and "Old Suzanna."

Slowly but surely, my dreams for the future are once again materializing in different forms. I visited You Tube yesterday and searched for videos on Williams syndrome. Two years ago, I saw only my personal videos posted on this subject. Now I see familiar faces with button noses and gorgeous eyes like Erik's. When I find a new video, I feel like jumping for joy. Yesterday I discovered this video of a young man who can drum up a storm. While I watched him perform, I realized I was less focused on his incredible talent and more transfixed by the joyous "woo hooing" in the background.

It was then that I suddenly had a little realization of my own.

No matter what Erik decides to do with his life, it is very likely I will have an opportunity to stand up in a crowd and cheer after all. My son has a chance to do things typical children find amazing. He has a chance to follow his own dreams and will likely need to work twice as hard as other children to accomplish them. I have all of the faith in the world in him and know he will blaze his own trail to happiness. The future is one big unknown for Erik Quinn.

I now know one thing for sure. And I'm certain it's true.

Moms like me get to "WOO HOO," too.

Thanks, Devin, for sharing your talent with the world and providing our family with another hero of our own.

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Thursday, January 24, 2008

The Tao of Nancy

I reject your reality and substitute my own.

-- Adam Savage

I'm in a strange spot spiritually these days. While the defensive numbness brought on by Erik's diagnosis continues to recede, I am suddenly able to profoundly feel many of the things I have anesthetized with trivial distractions and compartmentalizing all that occurs in my world. What worked for me before in order to shove things aside no longer is effective. It's obviously time to grow up and move on. Looking back, I see I was totally and completely numb for months at a time out of necessity. There are now many lovely things I am once again able to enjoy fully, yet there are a lot of feelings I no longer can hold back that simply hurt. This has been happening slowly over the past couple of years, but the process seems to be quickening now.

I talked to a mother whose daughter is severely mentally retarded. She told me that her experience with her child eventually brought up unresolved childhood issues of her own as she cared for her daughter. I want to talk to her more about her experiences and plan to meet with her again next month. I'm still waiting for some sort of lightbulb moment, but I find that knowledge and wisdom arrive at their own pace, no matter how badly I want to possess them. I'm still a complete novice. I'll let you know when I'm smart and wise.

Please don't hold your breath.

Importantly, I reached out to my childhood church yet again. I seem to love banging my head against a wall. I can't bring myself to post what I wrote the day it happened, as it is just too personal, but it seemed to be a positive experience. However, as I find myself searching for something within the walls of what would be considered traditional in terms of religion, I find myself eventually feeling completely forgotten. It seems we are not victims of cruel intentions but of simple bureaucracy. I find it very difficult to believe that if the traditional path is impossible for our family, we will all perish screaming in a lake of fire somewhere down the road. Sorry, but I just don't buy it. It is strange feeling closer to God than ever through Erik and yet even further away from what I grew up believing what my spiritual life would look like. I can honestly say, though, there has not been one day since Erik was born that I have ever been angry at God. My miscarriages prepared me for what would come. I knew when Erik was born that sometimes things just didn't turn out "perfect." I have arrived at a place where I am actually thankful that nature saw I did not carry those babies to term and that my body did what it was supposed to do--perfectly. By the time Erik was born, I had accepted the fact that things go haywire genetically, which took a little of the sting out of what ended up being an extremely very painful experience. I learned to adopt a more scientific outlook on a very personal subject. I know that Erik survived because he was strong enough. Even perfect enough. I am thankful for that. I will never jump for joy or consider Williams syndrome a gift but can really visualize and appreciate the blessings he has brought to my front door on a daily basis. Maybe in the end it will be a gift after all. I'm not there yet and may never be. That's okay.

Last week I once again made my feelings known to a church deacon who happeend to call our house in the role of parish leader and very innocently asked if there were any issues to pass along to our pastor.

Sigh. Here we go again.

I explained our situation once again in graphic detail to this poor woman and voiced my concern that families like us are falling through the cracks, finding themselves isolated at home. This will be the fourth or fifth time I have tried to explain our inability to simply attend a church service. In December we received an invitation to attend a Christmas service for those who were grieving and/or experienced loss. I explained that while this was appreciated, we were obviously not being heard! After my lengthy monologue, the reaction from this new deacon was promising, and I felt hopeful. Erik has now been tentatively matched up with a high school girl who may take him to Sunday school while we attend services (which, in itself, is a dream come true for my son, the ladies' man). Once again, I have my naive hopes up that we will fit in somewhere like other families do. I felt uncharacteristically optimistic about this, as it was the first time it seemed we were visualized as an exciting opportunity, not a challenging problem.

It has been days since my request, and yet another Sunday looms large ahead of us with no answer. It is hard for me to accept the fact that something as simple as attending Sunday services hinges on the desire of a teenage girl to help us out, but I suppose that's life. It would just be nice not to feel like a freak show just for one Sunday.

My new theory: Erik's hearing remains painfully sensitive while the people around me are completely deaf.

There has got to be more to this spiritual thing than putting my heart out and getting it stomped on by people who can't seem to hear me or think I should do things a certain way. If there is anything I have learned in the last three years, whomever is up there can hear me just fine from my shower or my Jeep (these seem to be the best "wireless hot spots" for me).

In closing, while my phone sits silently in its cradle, I feel like an idiot for believing this would work. If I haven't figured out that things don't work out the way I planned them by now, I'm even more dense than a freaking neutron star.

So this is it. I have poured my heart out and offered myself to others as I was raised to do, but if we get lost again, I'm done for the time being and will consider starting my own bizarre cult.

F*ck bureaucracy.

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Tuesday, January 22, 2008

Fifteen Minutes of Fame

I'm not really as bad as they say I am. I'm actually a really nice person.

-- Juliette Lewis (as Mallory Knox in Natural Born Killers)

I met a friend at a brewery downtown last night. This one, which I mentioned before, was converted from an old Catholic school. I passed through the gap in the tall, wooden fence by the parking lot through powdery snow much too cold to think about melting and past two small but angry fires captive in pits under metal screens. The bartender fed pieces of dry pine to each of them under the stars, looking up at me and saying hello as I entered the courtyard. I felt as if I was in the middle of a wintry scene from The Chronicles of Narnia. I smiled a little too shyly and quickened my pace. Anybody who drank beer in 16-degree weather without a football game in front of them was out of their tree, I thought.

I opened the oversized wooden door to the small cottage that looks as if it could have been a garage or some sort of outbuilding at one time. Another more serious fire blazed in the belly of a cast iron stove, filling the place with warmth. As I made my way past the narrow bar and a couple tables surrounded by beer sipping, cigar smoking patrons, the conversation abruptly ceased, and I felt eyes on me, making me wonder if I had something hanging from the tip of my nose.

Once I found my friend and our usual table in the back of the place, I threw myself into savoring some specialty red wine served in a fat glass that filled my palm perfectly, gazing at the snow behind the building through panes of leaded glass. Music that caused my thoughts to drift to the antics of the Manson Family poured from the speakers around us, thick with some type of jovial but sinister-sounding type of organ. I suddenly pined for the knee-high go-go boots collecting dust in my closet.

It was then that the face of a strange-looking man, whom I would best describe as Bruce Vilanch's twin, suddenly came around my left side, orbiting past my ear and coming to a stop a foot from me like a furry, gibbous moon. A small knit hat strained to remain atop his head.

He said, "Yup, you sure do look like her!" And then he disappeared again.

My friend and I looked at each other, blinking in a couple seconds of silence, and I then laughed, explaining that I get this all of the time. I apparently look like a lot of women. I have been stopped on the street and in stores, although it is rarely explained to me just why. Perhaps this is the reason I cannot pass through customs entering the country without threat of a rigorous cavity search and the contents of my luggage spilled out on a table for all to see.

A slightly more intoxicated stranger later plopped herself down in the booth next to me without warning, interrupting our conversation yet again and flattening my jacket, which was loosely piled beside me, with her generous buttocks. She squinted a bit and scrutinized my facial features before explaining that she and her friend were debating on whether I was, in fact, the actress Juliette Lewis. She came back to determine once and for all if I were indeed Ms. Lewis or not. Poor Juliette. I can't imagine strangers' noses almost touching my own or having people at less than arm's distance breathing all over me on a regular basis.

When the time came for these people to leave, the man walked back to say goodbye and offer a half-apology. I reached out across the table to shake his hand, instantly putting their silly, beer-infused mystery to rest.


Sunday, January 20, 2008

Seven Weird Things

Thanks, Rosemarie, for the tag! I didn't think that there were many weird things about old, boring me, but, as it turns out, I'm a complete bundle of weirdness!

The Rules:

Link to the person who tagged me, list 7 weird things about myself and then tag 7 others to play along. And, most importantly, let them know they have been tagged.

1. I am hopelessly sentimental. I tend to feel blue when my surroundings or circumstances are altered, even though I do very well with change over time. For this reason, I'm completely surprised I'm not a hoarder living in a house filled with mountains of aging bric-a-brac, boxes of used Zip-Loc bags, and stiffening gum wrappers.

2. I'm a perfectionist, and this causes me to put things I would like to accomplish completely off or neglect people if I don't feel I have the perfect amount of time or energy they deserve from me. I'm all or nothing this way at times, and it can make me look like a jerk or lazy when I don't consider myself either of these things.

3. My imagination runs rampant. As a child, I was my very own source of entertainment. I have always been a daydreamer, and my mother still has one of my grade school report cards that confirms this. If I don't like where I am, I simply go someplace my mind.

4. I prefer to sit with my back to the wall in a public place, if possible. I also feel uncomfortable in the presence of strangers wearing bulky coats, especially when I can't see their hands. That's what a little posttraumatic stress disorder tends to do to a person. This has become a fact of life and usually doesn't affect me terribly, but about once a year I'm in a restaurant or bank and have to get up and leave.

5. I'm all about olfaction. When I am feeling sad or upset, I light candles, clean, or open a window to have certain scents around me. I have been known to drive to the store for a particular scented candle, perfume, lotion, or cleanser. Since my pregnancies, my nose has only become more sensitive, which can be a real pain. There are black beetles that live around our house which occasionally find their way inside, and I can smell them for an average of three days, even though I can rarely locate them, while my husband usually cannot smell them at all. I sometimes end up with a pounding headache. The scent of chlorine makes me sick to my stomach because of my experiences at swimming lessons as a child. My favorite scents are cut grass, baking turkey and stuffing, Clinique Happy perfume, Pine-Sol, wet sagebrush, baby powder, leather, vanilla, citrus, and gasoline/motor oil. My least favorite: The particular type of perfume some former horribly catty roommates used to bathe themselves in, wet dogs, blood, apples, rubbing alcohol, horses, and body odor. When we moved here, there was a dead kitten in the wall, which only I could smell on hot days for three years. So, also on the least favorite list: Dead kittens.

6. I can't stand a completely quiet environment unless I'm reading a book, in which case it must be perfectly quiet. Since I lived alone for so long, I have always needed the television or radio on at home or in the car.

7. I am in love with words and word origins, especially Latin. Medical words really get my motor running, especially words like salpingo-oophorectomy, disdiadochokinesia, and sphygmomanometer. Color me a hopeless nerd.

As usual, I am not tagging anyone in particular but invite anyone who needs a fun distraction to play along. Let me know if you do!


Saturday, January 19, 2008

New Today

From the fabulous, model-puffy lips of Erik Quinn for the very first time:

"Someone's here!" (in response to the doorbell)

"I can't reach it."

I'm on cloud nine today. I worked out for an hour, cooked a big breakfast for the boys, and cleaned the house, and then we all went to the strange, short-staffed A&W at the nearby gas station for lunch as a family (Who knew diet root beer floats were only 4 points on Weight Watchers? Score!). Brian and I put Erik down for a nap when we arrived home and played a rousing game of Scene It on the DVD player. He is now asleep in the sun on the love seat with his Sudoku book, and I have my alone time.

Feeling better yet. I started another post about what occurred yesterday regarding my church, but it's long-winded and emotional, so I'll save it for later after a bit of editing.

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Friday, January 18, 2008

Fresh and Blood

You live you learn
You love you learn
You cry you learn
You lose you learn
You bleed you learn
You scream you learn

-- "You Learn" Alanis Morisette

Yesterday Erik's teacher, Miss Jeannie, rushed up to me as I dropped him off at school. She told me that as the little bus came to a stop in front of the school Tuesday, it let out a sharp hiss. Erik quickly replicated the sound and blurted, "Air brakes!" Sure, my boy may have difficulty removing his own jacket or using a toilet, but he is more than familiar with the intricacies of conveyance braking systems.

I don't have a lot to report this afternoon. The world around me is still a dirty, grimy mess, but I have accomplished some early spring cleaning. I cleaned out the coat closet. I unscrewed the light fixtures from the master bathroom and washed them all in the kitchen sink. A friend called to report that his wallet was missing after a visit to our house, so I removed all of the couch cushions, plunged my arm into the bowels of the furniture, and vacuumed everything out almost violently with the long wand as if I was performing liposuction on our living room set. Instead of a stray wallet, I found a book, a hair comb, a DVD wrapper, and enough crumbs to reconstruct an entire pastry. I sorted and bagged unused and outgrown items from Erik's ridiculously roomy closet. I cleaned out his toy boxes. I spritzed the entire house with Febreeze. I dusted. I caught up on laundry. I even worked a little bit on some surplus medical reports that my partner sent my way and made a couple bucks.

I have continued to work out each day with my tiny, blonde personal trainer, who yells, "Faster! Run!" He works out along side of me intermittently until his attention span gives out and he gets bored. He then spins in circles until he collapses into a drunken, giggling heap. I have made avoiding his careening body part of my workouts and am getting a bit more graceful and agile myself in the process.

Erik continues to challenge us daily. He kicks. He hits. He growls. He tells me he doesn't want me to do the things for him that he enjoys just for the sake of telling me no. Yesterday as I shut his door after I struggled to get his diaper changed without getting a black eye and he told me to turn the music off that I know he loves during his nap, my heart ached. I went on with my day, though, and thought that today might be a little better if I tried harder to connect with him somehow. I think we both tried harder. Overall, we had a great morning at physical therapy with the horses and hanging around the house. I'm constantly changing my approach to the daily tasks that set him off. While this doesn't always guarantee success, it saves my feet and my feelings from being stomped upon.

It's nice to see that the sun is shining again. The wall of dreary clouds has dissipated, and the mountains are gleaming in the afternoon light again, at least for the moment. When I can see them, I always feel anchored somehow.

Slowly but surely I am feeling better.

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Thursday, January 17, 2008

Sweet Talk

Last week Erik and I went to the grocery store for a few things. From his perch atop the shopping cart, he worked the crowd at the store, chatting to the ladies in a very different manner than he did the gentlemen. When a man failed to turn his head our direction, he went through his usual routine of replicating the noises an all-terrain vehicle would make, "vroooming" and practically begging for attention. I went about my business plucking items from the displays and shelves, politely nodding and smiling at the new friends we made, feeling another remnant of my shyness shrivel up and fall away, as it tends to do on any public outing with Erik. Remembering how horrified this used to make me feel makes me smile in itself.

In the baking aisle I bent down to grab a package of walnuts. As I did this, I heard Erik greet someone new who had ventured down the same aisle.

"Hi, sweetheart!"

I straightened up and tossed the bag into the cart, turning my face up to see an attractive woman about my age with a surprised, amused expression on her face.

I grinned at her and said, "You'll have to excuse my son. He's a bit forward sometimes."

She giggled as if she had just met Brad Pitt, and we continued on our way, leaving nothing but new friends in our wake.

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Tuesday, January 15, 2008


It seems like every day’s the same
and I’m left to discover on my own
It seems like everything is gray
and there’s no color to behold

-- "Fine Again" (Seether)

I dropped Erik off at school today after having weeks off due to the holidays and the weather. I absolutely dreaded doing it, knowing the break would set us back eons in terms of his coping skills. Thankfully, I arrived 15 minutes early, beating the chaos of the school buses and most of the other families, and we were able to loiter a bit on the way into the building. I allowed Erik to stall for time and provided my usual zippy commentary on the things we saw. He admired the leftover snow and puddles that had transformed into patches of icy-black glaze overnight. I finally convinced him to enter the building, and we were greeted by a few members of the staff. After I unzipped his jacket, he took it off without any help whatsoever. I helped him hang it up, kissed him on the cheek, and made my way out of the classroom. The women who had greeted us led him off, talking in soothing tones and apparently giggling in response to his charming banter.

That was easy. Now what?

The world outside my car and my home is so gritty and filthy now. I have always loved winter, but the clean, white snow that sparkled like iridescent sequins in the sunshine years ago seems to be a distant memory now. There are only rounded scabs of aging, dirty ice, and piles of leftover cinder rock used to sand the roads turn everything the color of dried blood.


Instead of home, my Jeep took me to the parking lot of a local department store. They had remodeled the building, and everything was new and bright as I walked in the door. Paperback novels were on sale, and I chose three of them, something I usually never let myself do unless I'm trapped in an airport somewhere. I wheeled my cart through the pink and red Valentine's Day displays and inhaled the sweet but cloying scent of cheap, waxy chocolate. As I passed the footwear section, I spotted the shoes I wanted to buy Erik, which were almost half off, perched on a top shelf as if they were waiting for me to find them. Score! I bought two pairs in different styles and a couple new sweatshirts for him to wear to school and day care. Next, I crouched down in the makeup aisle and located the undereye concealers. Apparently, the one I chose before is specifically formulated for slightly stressed-out grade school girls, because it doesn't begin make a dent in my dark circles. Instead, I end up looking a bit like a figure in Madame Tussaud's wax museum. Perhaps that's why Madeleine Albright comes to mind when I look in the mirror these days.

I eventually made it over to the grocery section and found a package of bean sprouts, rice stick noodles, and bottled fish sauce to put into the shrimp Pad Thai I am creating for dinner this evening. Another wonderful distraction from my problems I have rediscovered is cooking. Since I adjusted my diet and began to lose weight, I have only enjoyed cooking that much more. Last night I baked a bulging Mexican-style pizza piled high with black beans, peppers, jalapenos, spinach leaves, onions, and low-fat cheese. Brian gave it a thumbs up.

After the checker very patiently bagged my things in the fabric bags I brought, I drove home through the grit and realized how much I want spring to arrive. I want Easter baskets, the Kentucky Derby, cherry blossoms, and the birds to begin migrating back home. I want...

I want the world to just be clean again.

I twisted the stereo volume knob and felt the first song on my iPod begin pulsing from the speakers around me. I made my way through the morning traffic, hiding behind my dark glasses and feeling my stomach growl, reminding me I was still alive and quite well.

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Monday, January 14, 2008

Girls Only

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

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

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

We should probably purchase another bottle of Patron, too.

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Thursday, January 10, 2008


Erik and I spent the morning making brownies from a Weight Watchers recipe (with a mixture of Kashi soy cereal, butter, and powdered sugar on top, which he immediately plucked off, put to the side of his plate, and said, "Put away!") and playing with dishes in the kitchen sink, creating a massive flood on my floor.

I still feel really off today.

Erik's appointment went fairly well. Today was the first appointment I didn't feel like Brian needed to go with us for any sort of education or support. There is no longer any point. Unfortunately, this doesn't make it easy. I dressed Erik in a pair of good jeans without holes in the knees, a nice shirt, and a denim jacket, skipping his plastic leg orthotics in lieu of socks and his black suede Vans. I figured there was no point in sticking out any more than we would, anyway, in the waiting room. We checked in, and Erik smiled at the girl at the desk, telling her that he was going to see the doctor. We took over a seat in the large waiting room next to a playground-sized jungle gym type setup and waited. The other kids ran in bee-like swarms, whizzing past us and missing us by centimeters on nimble legs, seemingly failing to notice our presence at all. Suddenly I felt like Jane Goodall, peeking in on another foreign world through a layer of jungle foilage. I felt a rush of adrenaline enter my bloodstream as I glanced around the room, stirring up hot, poorly directed fury at the other parents with perfectly typical children. I let the emotions wash over me and enjoyed the evil heat of them for once in a public setting. I felt angry and high.

I noted all day that Erik experimented with sound. He repeatedly clapped his palms over his ears to listen to the radio, the television, and my voice, asking me to repeat certain sounds or phrases. In the waiting room this continued, only he kept his hands sealed firmly over the openings of his ears to block the sounds coming from the other children in the room. He laid across my lap, stiff and motionless like a pale bundle of kindling. I tried to reposition him so he could at least watch the other children playing in the room, but upon being lifted into the air, his legs stuck out perfectly to the sides like metal prongs and then quickly wrapped around my chest. I felt frustrated and annoyed. He clung to me like a parasite and refused to move. He simply buried his face in my neck the remainder of our time there. A father stared with me with eyes the color of molasses as his wife spoke fussed with a baby in a car seat, and an adorable collection of bundled-up newborns were carried in from the wet afternoon by their shockingly young mothers. I smiled at them but felt my stomach turn.

A nurse propped the metal door with her small tennis shoe and called out Erik's name. I pried him off of me, and we walked slowly through the doorway into the nurses' area. We tried to stand Erik on the scale, but he promptly began wailing, his face transforming that familiar ruby red. We finally resorted to sitting him on a layer of tissue paper on the infant scale. Stiff and screaming, he weighed 32 lbs, 9 oz. He absolutely refused to stand against the wall to be measured for height, even though I made a complete ass of myself measuring the length of my own body. The blood pressure measurement turned out to be a complete disaster. I began wondering why we were in this place at all.

We were escorted to a room where we answered a myriad of questions about milestones. Thankfully, I no longer need to answer them all negatively. Yes, Erik can jump. He can speak in short sentences. He eats protein. He drinks milk. He sleeps well. He knows the names for things. He can count to 5. In fact, he can count to 20 if he wants to. Yes, he eats a very minimal amount of fast food. He is fond of the seven-layer burrito at Taco Bell. For the first time I felt like I appeared like a healthy, put-together mother who slept regularly. Although I was on edge in this place, I smiled. I have come a long way in a year. As she went to inform the doctor we were ready for her, I pulled out my cell phone and played the new Britney Spears song Erik loves and I detest. He asked me to play it again and again. I obliged him and laughed as he said, "Again! Again!"

Dr. G came into the room and greeted us. She said she was thinking of us recently and was delighted to see us on the schedule. After some initial pleasantries, she attempted to examine Erik's ears and listen to his heart and lungs with her sthetoscope. If she did glean any information from this brief examination, it would be miraculous indeed. He absolutely refused to let her touch him, despite an impresive offering of stickers, which Erik doesn't know what to do with, sweet talk, and her own examination of my own heart, lungs, and ears. The good news is that I am completely healthy and do not have any variety of otitis media or a heart murmur. We did manage to get Erik's pants off and his diaper unfastened enough to examine his manly bits, which were reportedly fine. He continued to wail the entire time.

Once the screaming subsided and Erik began carefully examining the lights in the ceiling and the floor vents, which seem to blast air the temperature of the deepest level of hell, I asked about an orthopedist, and she began filling out paperwork to refer us to a pediatric rehabilitation physician in town. She asked about Erik's hippotherapy and if I was frightened to see him on a horse. I laughed loudly and immediately answered no. It always surprises me that even most physicians don't really have a grasp of what my life is like. I told her to recommend our physical therapist to other parents, and she took notes. The nurse returned with a fistful of Erik's immunizations, and I held his struggling body down while she deftly stabbed his muscular thigh with the loaded needles. Overall, I was impressed by her speed and technique, and she was impressed by Erik's brute strength. As we packed up to leave, she mentioned the other person in town who has WS, now an adult, and how beautiful the starbursts in her eyes are. When she realized I knew of this person, she looked slightly alarmed and said she could not disclose any more information because of a potential HIPAA violation. The trouble is, there aren't other people like Erik in this region. I informed her I knew whom she spoke of and that we had yet to meet but that I knew she was doing quite well. As we left, Erik began to wail again, upset that he could not examine things on the way out. As I reminded the nurse to update our immunization card over the screaming, she commented to me how patient I was and what a great job I was doing with my child. I felt like laughing, crying, and bitch slapping her at the same time. I said goodbye as she held the door open for our departure and next poor pediatric patient.

I came home, sat Erik in his chair with a giant sugar cookie and a serving of our freshly-baked brownies, and poured myself a generous whiskey and Diet 7-Up, refreshing it just halfway through. I ruffled his hair as he quietly munched on his treat. Wet snowflakes began smacking the ground outside the kitchen window, and the sky blackened.

I smiled and felt the alcohol enter my bloodstream, numbing everything I felt earlier.

Our next appointment at the pediatric clinic would occur in 2009, as Erik turns 5.

Thank God.

There is simply not enough whiskey or sugar cookies in this world.

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Wednesday, January 09, 2008


I am in a relatively sour humor today. I feel as if I could snap at any given moment, and I detest that feeling. It's poison in my blood. I have a heavy, strange feeling of impending doom. I feel a lot like Michael Douglas in the movie Falling Down, right before he exits his car and abandons it on the freeway in the festering traffic jam on his way to get a hot breakfast and a new semi-automatic weapon. I think it's a combination of stress, being trapped indoors, and fighting the cold Brian has had for a week. Of course, I haven't received the full-blown version. I have been taking my vitamins and working out daily, so my body is just really busy being exhausted and fighting it. It would almost be better to just get it over with. Luckily, you can't really tell I feel like soggy cat food in the photo above because sick eyes disappear right into black and white.

Erik has a doctor's appointment tomorrow. We see doctors so infrequently that I think my tolerance for them has actually lessened. I hate the waiting rooms filled with cutesy crap that Erik doesn't even notice, the cheap furniture teeming with billions of microbes, and the chance the nurse who assists won't know what the hell she is doing, wielding a needle as if she is Luke Skywalker with a light saber, merrily twisting it around in my child's tender flesh. Oh yes. Hopefully by tomorrow I will feel a bit more like Ms. Merry Sunshine and less like Jack the Ripper. Now that I think about it, most of my mood probably stems from knowing I will have to sit in that waiting room. If that doesn't make me feel like going on a shooting spree, nothing does. I hate it. I hate it. I hate it. I hate being immersed in that environment against my will. I hate it. Erik tries to mingle with other kids, and they end up staring at him or scaring him to death with an unexpected noise. The last time we went to this particular office, a very sweet little boy said hello a little too loudly, and Erik began screaming and ran to me. God. I hate it.

We don't have an orthopedist, but my gut is telling me we probably should. I will ask about this tomorrow and perhaps contact the children's hospital in Portland or a Williams clinic across the galaxy for suggestions. As Erik is the only child in town with WS, I don't expect to get even a single answer I need tomorrow, but I feel like I need to at least figure out where to go from here to ensure he is growing properly. I'll run it up the flagpole and see what happens.

Erik is enjoying the pool at physical therapy this afternoon. I'm glad he got out of the house today, as I feel I am boring him to death. At therapy when his PT swims him over to the thermometer in the water and asks him what it says, he confidently and consistently announces the temperature is 92 degrees. Apparently that was what the thing said months ago, and Erik never forgot. It's very Rain Man and makes us laugh.

Today Erik came up to me out of the blue and loudly announced, "I have a question." I have no clue why or where he picked up this phrase. When I looked up from what I was doing and let out a snort, he began to laugh, too. I love my little Random Man.

I was invited to a girlfriend's house for margaritas, chicken enchiladas, and an afternoon watching ridiculous movies and sitting in the hot tub Saturday. I'm so in. It's when I'm edgy that I usually let my worries go and have the most fun. Re-reading what I wrote just now, I think I am getting a tad bit crotchety and need to remove the two-by-four from my posterior.

Jose Cuervo, here I come, baby.

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Tuesday, January 08, 2008

California Dreamin'

It has been snowing all day today. I got my buns on the treadmill early this morning thinking Erik would have school. However, as I watched the news over the din of my ancient exercise equipment, it was pretty clear the two-hour delay would mean we would have a snow day today. When I grew up here, it would take about two feet of snow to cause even a two-hour delay. Pansies.

Erik and I were simply bored today. I sometimes feel frustrated that finding things to do with him in any traditional sense is difficult, and the entire day ahead of us alone tends to intimidate me sometimes. The Magnadoodle provided 15 minutes of entertainment, as he asked me to draw different variations of construction equipment. He did attempt to draw a bicycle upon my own request. We read books and played with the excavator his father gave him for Christmas, although he made me push the buttons to operate it (it's loud). He managed to give me a fat lip as he accidentally swung a toy at me later in the day. As I felt the rigid plastic crush my already generous bottom lip into the sharp ridge of my lower teeth, I wondered if I would ever feel like the normal little kid-things would not shove me directly over the edge of this ridiculous emotional cliff of mine I have been perched on for the past three years. We had one small, unimpressive battle over what would be served for lunch, resulting in one time out, but other than that, the acting out was kept at a minimum today. He has finally determined that I am no longer bluffing when I name a consequence for his next behavior, and, therefore, he is much more in control of himself, although he seems as if he wants to explode at times. I have made it clear to him that being frustrated and angry is perfectly acceptable and have tried to validate any emotions he is feeling but have also made it quite clear that punching, kicking, and hitting one's own mother is something one should avoid.

The snow is still streaking past my office window. This is not the kind of snow I sigh softly upon seeing while listening to Burl Ives holiday songs but the kind that pelts the world sideways, jamming in my satellite dish, forming a small glacier, and interrupting my afternoon of porking out on BBC America shows and merlot tasting. This may be the first day I make the trek out in my winter gear over the tundra to chip at it. Winter has arrived.

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Friday, January 04, 2008

News from the PT

I noticed that Erik is walking on his toes to the extreme now when he is free of his orthotics. Sometimes to the point where his bare toes curl under like a ballet dancer. His orthotics seem to have effected little to no benefit in the way of training him to walk correctly, although they do continue to keep his feet nicely flat when they are worn.

Today Erik's private physical therapist informed me there has been a definite change. Erik's body is stiff all over, likely because his long bones are growing faster than his soft tissues. This is not ominous news by any means, but I find it very scary at the same time, as I have seen older people with WS, including the humps, the slumps, and the strange muscular contractions. The little physical manifestations that make them appear like the elderly way before their time. Erik blew off the Williams growth charts months ago in the height category. Years ago. He has not gained weight in months but just seems to lengthen. Erik is plain tall, just like me, and yet is unlike his peers with the similar genetic deficiency. The deficiency that produced human beings that were perhaps once called "elves" or "pixies." All I can see ahead is more of the unknown in the form of a rapidly growing boy. How many WS parents have been told their child is tall, even by those who are unaware of this diagnosis? I can only do what is recommended and hope for the best, hoping the genes he has don't clash with the genes he lacks.

More stretching.

More slant board for the heels.

More protein.

More praying things will catch up in him.

I am fully aware that this condition makes any sort of typical change in his rigid little body a giant dip in this emotional roller coaster of mine. I'm trying not to worry. Easier said than done.

Grow, muscles, tendons, and ligaments. For God's sake, grow.

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A Morning at Our House

At 3 a.m. my husband, who has been struck down with some sort of tuberculosis-like ailment, snored so loud that the dishes in the kitchen rattled. Between that and the storm pounding against the siding and windows, I could no longer sleep. I grabbed my pillow and the Afghan throw from the end of the bed and immigrated to the living room sofa, where I dozed off and occasionally startled awake all night long, dreaming of informercials. I suppose I'm used to seeing them on the television when I can't sleep. When I awoke for the last time, I heard Erik's voice cheerfully chattering to nobody in particular in his bed, and the wind was still howling like a wounded dog. All 15 pounds of Gracie-Cat were atop my outstretched arm like a wet sandbag, and I realized I could no longer feel or wiggle my fingers. I pushed her off and slowly lifted my aching body from the couch. I made my way into Erik's dark room and crawled into bed with him, asking for some of the big, fleece blanket one of our friends made and brought to the hospital when he was born. I put the arm I could still feel around him and squeezed him tight.

He said, "It's windy out dere!"

Surprised, I answered, "Yeah, it is. I bet it's raining, too. Do you like the wind?"


"I like it, too. When it's windy, it sure is cozy here in your little bed!"

He stopped for a moment and asked, "Daddy's here?"

"Yes, he's here. He's in bed."

He giggled.

"Why is that so funny?" I giggled, too.

There was hissing and gurgling from the kitchen. He stopped, cocked his head, and said, "Coffee pot."

"Yup. Coffee pot."

"Go see dad. Bye, mom."

I held him tighter. "Wait! You have to give me a kiss first."

He pressed his soft, smooth cheek to mine and made the obligatory, adorable kissing noise he has perfected. Then he blurted, "Bye!," grabbed Stinky Dog, backed quickly out around the railing of his bed in the darkness, and transformed into a silhouette wearing footie PJs framed by the door.

I smiled as I watched him disappear. "Erik, I love you."


Then he was gone.

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Tuesday, January 01, 2008

I Should Have Said...

To the gentleman at the stables: Thanks for informing me five minutes after you met me that Erik "needs a sibling." Wow! I had absolutely no earthly idea. Now I can follow your advice and start being a good mother. In the meantime, though, please get out of my uterus. I am a very busy woman with things to do.

Oh, one more thing. NEVER label anybody's child you know next to nothing about "severely mentally retarded," like you did my son so casually, unless the parents say these words first, demonstrate they are comfortable with them, and/or they actually even apply. I know parents whose lips have yet to utter those words because of the pain and shock they felt the first time they heard them. I could care less what your credentials are, what your title is, or where the hell you happened to work in the past with developmentally disabled children. You seem like you mean well and have a good heart, but your words will undoubtedly someday destroy a parent who is new at this when you blindside them as you did me.


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