Erik Quinn: The Heart of a Family: September 2007

Friday, September 28, 2007

My Desktop Free View

Rosemarie is an extremely patient, kind woman. She knows I am hit and miss with tags and blogging activities but took a chance on me with this one anyway.

This is an interesting sort of meme. The instructions (see below) are to post a snapshot of what your computer desktop looks like right this very second. I was intrigued by this until I realized revealing what sits on my desktop felt sort of like telling the world what color underwear I have on. Once I got over my very unexpected e-hangup, I decided to participate. Why not? Besides, just yesterday I safely retired my Chippendales Dancer computer wallpaper in exchange for something fresh and much more refined (yes, I am kidding).

If you don't know by now, I am a medical transcriptionist. This involves sitting at a computer for hours at a time, often ignoring natural physiologic cues for food and potty breaks in the interest of making twelve cents a line typing operative reports, progress notes, and lab results. It's a physically and mentally draining job that isn't for most people. Most of the transcriptionists I know are a few french fries short of a Happy Meal--myself included. I have often joked that someday when I grow up, I would like to have a career you can't order from a television commercial. Unfortunately, more seasoned transcriptionists like me are being replaced by much cheaper, lower quality outsourcing services on the other side of the planet or by voice recognition. For the most part, I absolutely love what I do. I provide a much-needed service, and it has taken very good care of me in return. I have worked in almost every field of medicine over the years. I'm also quite talented at diagnosing and treating friends and family with various ailments and injuries (I diagnosed my neighbor with Raynaud's syndrome a couple months ago). Not only is the job tedious and draining, it's sometimes depressing, depending on the patient. While I work, I often choose to go to my happy place mentally, which changes daily. I often put photos of places I have been on my desktop, and half of my brain is often there, sometimes in a beach chair sipping whatever brains like to sip from a plastic coconut shell with a day-glo paper umbrella in it. I can type in a sort of autopilot mode almost faster than I can speak, and I often find myself thinking about two or three things at once, my happy place usually being one of them.

Let me introduce one of my happy places to you. No, this is not an adobe meth lab, although I realize it might appear to be at first. This is actually the Zane Grey Pueblo Hotel on Catalina Island not far off the coast of Southern California. Zane Grey was an American writer who wrote adventure/pulp fiction novels, many of which were about the Wild West, a region close to my heart, in the early 1900s. He was also one very talented fisherman. This hotel was once his home. I was lucky enough to visit Catalina Island on our honeymoon and took in the fabulous view of Avalon Bay from the quiet, empty pool area at the hotel. This ain't the Hilton, baby. It's old and drafty and probably home to a few very rowdy ghosts. Of course, I fell in love with it immediately. There are no TVs, phones, or clocks in the rooms, and standing on the balcony makes you feel as if you have traveled backwards in time.

I would like to actually stay in this hotel someday. As a new bride over six years ago, it would have been a waste on me, as most of the trip was, as stress had covered my hands in bumpy hives and I had been shaking like a nervous poodle nonstop for three days at that point. Someday I'll go back, and I plan on reading Riders of the Purple Sage by the pool in one sitting.

In my tradition of not wanting to pressure anyone or leave anyone out, consider yourself tagged if you wish and follow the instructions below.

My Desktop Free View Instruction:

A. Upon receiving this tag, immediately perform a screen capture of your desktop. It is best that no icons be deleted before the screen capture so as to add to the element of fun.You can do a screen capture by:

[1] Going to your desktop and pressing the Print Scrn key (located on the right side of the F12 key).

[2] Open a graphics program (like Picture Manager, Paint, or Photoshop) and do a Paste (CTRL + V).

[3] If you wish, you can “edit” the image before saving it.

B. Post the picture in your blog. You can also give a short explanation on the look of your desktop just below it if you want. You can explain why you preferred such look or why is it full of icons. Things like that.

C. Tag five of your friends and ask them to give you a Free View of their desktop as well.

D. Add your name to this list of Free Viewers with a link pointing directly to your Desktop Free View post to promote it to succeeding participants.

List of those who participated in the tag:

maiylah’s snippets
The Ramblings of a Woman
Miscellaneous Matters
Erik Quinn: The Heart of a Family

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Thursday, September 27, 2007

Ring Around the Mommy

Erik woke up at 6:15 today ready to hit the ground running. As I groaned through a case of worsening exhaustion and tried to dissolve into the couch underneath a blanket in front of the news this morning, Erik literally ran circles around me, singing "Ring Around the Rosy." He allowed me to cuddle with him two seconds at a time here and there. I later tried to grab a minute for myself to use the bathroom and closed the door behind me. Shortly thereafter, I heard Erik's footsteps approaching on the other side of the door. I then heard his slightly muffled voice say, "DING DONG!" He is quite fond of doorbells these days and expects doors to open when he imitates one. I had to laugh.

I am slowly adjusting to my crazy new schedule. I dropped Erik off at school this morning, after which I headed straight to the gas station and then the salon, planning to pick up work on my way back across town with a little free time before the school bus pulls into the driveway. I did it all in one trip today! I'm finally making this work somehow!

The salon always lifts me emotionally. The ambiance was sullied only by the skunky scent of perm solution. I spotted the odoriferous offender sitting primly under the dryer right by my stylist's work station. I have been Carole's client since high school. We both sported gravity-defying, hairspray-soaked manes of giant hair in the 1980s and early 1990s. Our hairdos are much smaller these days, but we cackle through my entire appointment, obnoxious as ever. I love making her laugh. That is one place where I always get a hug. It always surprises me when she puts her arms around me as I hand her money, but it's something I never get tired of.

Lastly, as always, thank you for all of your comments. You all make me smile. I'm not nearly as nervous as I was, of course, about Erik's echo as I was a year ago, because I know he doesn't have ASD. However, there was narrowing in one area that we were concerned about, and there is always the fear of seeing anything new. My anxiety mostly comes from this town not being very large and the doctors here seeming to be completely uninterested in monitoring much of anything. I once had to practically beg for a urine calcium test (they told me a serum test was unnecessary). The results are not something I can control, but I know we are so very lucky to have a strong child without many problems thus far.

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Wednesday, September 26, 2007

Yearly Torture

I bit the bullet and called Erik's cardiologist's office today to schedule his sedated echocardiogram. I did this after receiving a cheerful "friendly reminder" postcard in the mail to prompt us to do this. It was the kind of reminder I receive when I am due to have my teeth scraped, I have a date with my gynecologist, or my cat needs her shots. It seemed so...casual.

I admit it. I'm still slightly put off by perky office staff who do their jobs quite professionally but don't seem to realize our very lives depend on the results of the tests performed by their doctors. Dammit, there should be more fanfare upon our scheduling these appointments and our arrival at the door with a child who has been n.p.o since midnight. Angels singing? Free chardonnay for nervous mothers? I mean, would it kill them to offer parents a sedative? Tranquilizer dart? Brown paper bag to breathe into? Bong hit?

For God's sake, shouldn't there be hugs from a certified counselor at the door?

No. We're on our own and can't control a thing. We must accept that. We sit and attempt to appear as completely normal according to society's standards as possible and enjoy a copy of Highlights Magazine from August of 1983 (which will likely be upside down in my hands, anyway) while we smile at patients and staff who enter the lobby as if we are having high tea, not knowing if our kid's arteries have deteriorated. We must sit on pins and needles, knowing the doctor will run the ultrasound wand over our sedated child's slicked up chest in a dark room steeped in complete silence for what seems like an eternity before there will be any relief whatsoever. Wow, sometimes I REALLY hate being an adult.

There is a little relief for me just knowing that the date is set.

November 9, 2007, at 8 a.m.

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Tuesday, September 25, 2007

Leaky Feet

Random Thought of the Day: If crickets are supposed to be good luck, then why do I scream when I see them and fight the urge to smash them to bits? My biggest fear is bludgeoning a big, juicy one with the bottom of my huge tennis shoe and then finding a miniature top hat and cane next to the oozing husk. That's the only thing that keeps me from doing it, really.

I'm waiting with my delicious diet beverage for Erik's bus to pull down the dusty driveway. I wanted to update today to report the sudden surge in language that is happening in Erik. The complete sentences are coming fast and furious now, such as --

"Where's puppy?"

"I broke it."

"I love you, too!"

"I'll find it."

"I'll get it."

"I see it."

I also would like to pose a question to your parents out there in Willie World about skin and nail quality. Erik's toenails and skin break down easily. His toenails are stronger than they used to be (they split when he was a baby), but the skin on the ends of his poor toes wears completely through with very little trauma if he doesn't wear shoes, leaving trails of blood all over the house. If Brian ever disappears and there is Luminol employed during the investigation, I will be in BIG TROUBLE. The place will light up like a Christmas tree. I am constantly mopping bloodstains off the floor. Does anyone else have this problem? I thought it would improve since he began walking and not crawling so often, but the problem has actually not changed at all! He is still covered in mild eczema, mostly on his limbs, which consists of tiny, almost invisible bumps. His face gets bad in the winter, which tends to look a lot worse than the rest of his body. It's red and scaly.

I highly recommend 1 cup white vinegar to 1 quart water for mopping hard surfaces, by the way. Just in case you are wondering how to remove bloodstains.

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Sunday, September 23, 2007


There is a special place in life,
that needs my humble skill,
A certain job I'm meant to do,
which no one else can fulfill.

The time will be demanding,
the pay is not too good,
and I wouldn't change it
for a moment, even if I could.

There is a special place in life.
A goal I must attain,
a dream that I must follow.
Because I won't be back again.
There is a mark that I must leave.
However small it seems to be.
A legacy of love for those
who follow after me.

There is a special place in life,
that only I may share.
A little path that bears my name,
awaiting me somewhere.

There is a hand that I must hold,
a word that I must say,
a smile that I must give,
for there are tears to blow away.

There is a special place in life
that I was meant to fill.
A sunny spot where flowers grow,
upon a windy hill.

There's always a tomorrow and the
best is yet to be, for somewhere
in this world, I know there
is a place for me.

-- Author Unknown

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Saturday, September 22, 2007


Williams syndrome (also Williams-Beuren syndrome) is a rare genetic disorder, occurring in fewer than 1 in 7,500 live births. It is characterized by a distinctive, "elfin" facial appearance, along with a low nasal bridge; an unusually cheerful demeanor and ease with strangers, coupled with unpredictably occurring negative outbursts; mental retardation coupled with unusual (for persons who are diagnosed as mentally retarded) language skills; a love for music; and cardiovascular problems, such as supravalvular aortic stenosis and transient hypercalcaemia. The syndrome was first identified in 1961 by Dr. J. C. P. Williams of New Zealand.

(From Wikipedia)

The beautiful photo of my baby above was taken by my mother last weekend while Brian and I were away. Brian and I were talking last night, and we both seem to be on the same page regarding Erik's rapidly changing behavior and his frightening angry outbursts that seemed to begin overnight. For example, if I ask Erik to do almost anything at all, there is often a fierce battle that follows. Yesterday I was kicked in the stomach while I tried to brush his teeth and then later (twice) while changing his diaper. He looks directly into my eyes and almost smiles at me when he strikes at me and these outbursts occur. This behavior is very definitely not Erik-like, and I find it extremely upsetting. I have adopted a deliberately cool demeanor when it occurs and simply put him in his room for five minutes when it happens, but I'm not sure if this is the right thing to do or not. Yesterday when he was asked to find the car at the stables, he went face down in the parking lot and refused to move in front of everyone. Unfortunately, he becoming too heavy to carry very far! Luckily, most of that particular incident came out of being stubborn, not angry, and had a very normal (albeit frustrating) feel to it. His behavior became more aggressive after I carried him to the car. I worry about days when he suddenly seems very angry at me and the world without any warning at all. You may ask why I need to sort out what behaviors are related to my child's syndrome and what are of the normal 2-year-old variety. My answer to this question would be that I need to confirm that these outbursts are WS related because they are heartbreaking. I need to know my own child doesn't really hate my guts. I need to confirm that these are common WS issues that can be successfully dealt with and are not the result of something I did or didn't do. I need hope and reassurance. Pretty simple.

We agreed we need some new techniques and tools to help us cope with this worsening problem, and I found the book Understanding Williams Syndrome: Behavioral Patterns and Interventions by Eleanor Semel and Sue R. Rosner on line. Hopefully, it will answer most of our questions and promises solutions to behavioral problems common in children with WS. I'll post my input on it when I'm finished. The following is taken from what Ursula Bellugi had to say in the foreword in the book. That was the most compelling selling point for me, as I have great respect for the woman.

...the first comprehensive source book on the behavioral patterns of individuals with Williams syndrome. Not only does it summarize and analyze the research literature, it...provides problem-specific interventions, general guidelines for addressing problems...and innovative techniques for developing the potential of many individuals with Williams syndrome....combining research findings with real-life examples, clinical observations, and anecdotal reports...[it] goes beyond generalities by describing variation among individuals with the well as subgroups...[The authors]...are the ideal people to pull these strands together, both with respect to research and to intervention...

—Ursula Bellugi
Cognitive Neuroscience Laboratory, The Salk Institute

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Thursday, September 20, 2007


I am unable to determine whether Erik enjoys preschool or not. I imagine he does on some level, but I'm sure if he was asked, he would choose to attend adult functions with me during the day over soaking his fingers in globs of paint and drinking watered down juice from Dixie cups with people his size.

We bundled up today and drove to school. Jeff shouted hello from his perch behind the window of the school bus. Once we were inside, I ran into the EI parent group moderator. She attempted to strike up a conversation with Erik, but he largely ignored her and sunk into silence. I led him to his cubby in the classroom and asked him to unzip his jacket, but he stood there and stared at the floor. I removed his jacket halfway, which prompted him to reach up and pull it off completely. He went through the motions of hanging it on a hook in his cubby with my hand over his, which was impressive to me. At this point, things went quickly downhill. We were fairly early, so there were only a couple of children in the classroom at the little table that held a tiny, wooden train set. Erik's subsequent meltdown was a complete surprise to me. I craned my neck from where I stooped on the floor to see what had caused this outburst. A girl played with a relatively pleasant musical toy, and I could only guess that triggered his hyperacusis. My boy's face turned tomato-red, and his bottom lip stuck out in a fleshy shelf. Tears began to squirt from the corners of his eyes as if he was in agony. I wrapped my arms around him as he continued to sob. The teachers began a maddening but sympathetic game of "Guess Why He's Upset?" I finally speculated out loud that it was the musical toy that pushed Erik over the edge. As the explanation was coming from my lips, Jeannie intercepted the electronic toy and switched it to a lower volume. She then told me I could do what I needed to do, giving me subtle permission to leave the room. I kissed Erik on the forehead, and he reached his arms out for me. That killed me. I said goodbye and walked away. I knew that he would calm down quickly once I was gone.

I wasn't in a fabulous mood to begin with this morning. I'm feeling overwhelmed, and little things are causing me to snap like a dry twig. For once I welcomed the voices in my head when I got back to the Jeep as I tried to sort my feelings out. I thought long and hard about all that Erik and I have been through in that building. In retrospect, it is quite clear that the old days were so much darker. One year ago, he slumped over and was motionless every day he was there. I remember pounding the door open and sprinting to him thinking he was having some sort of seizure when he was just playing dead around the other children. We both cried a lot. Today had a very similar feel to it, but I concluded that Erik has come leaps and bounds from where he used to be and that there will be days like this. Yes, they still suck, but they are better. Satisfied with my own self-help session, I took a deep breath and turned the key in the ignition.

As I drove across town, my cell phone rang. I answered it as if I was Mary Poppins on Prozac, hoping that pretending I was in a better mood would make it true. It was Jeannie. She reported that Erik had calmed down but was silent. One of his goals is to play with other children, so she is pushing him a bit in that area, but he wasn't having it today. She said he watched them intently, refusing to join in and looking like he wished he was somewhere else. Anywhere else. She was honest but strangely reassuring. Knowing he wasn't sobbing took some of the sting away. I said a heartfelt thank you and hung up.

I turned the car in the direction of the grocery store. I suddenly felt like visiting the cleaning aisle and sniffing the new dish soaps and laundry detergents to drown my sorrows.

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Tuesday, September 18, 2007


I went to see the preacher
To teach me how to pray
He looked at me and smiled
Then the preacher turned away
He said if you want to tell him something
You ain't gotta fold your hands
Say it with your heart
Your soul and believe it
And I'd say amen

-- "Bang a Drum" Bon Jovi

I have no idea where to start with this post, so I will just start typing and see what happens.

Saturday Brian and I drove to Corvallis for the Oregon State/Idaho State football game. We dropped Erik off at my parents' house before we left town. We found a nice parking spot in our usual lot next to an emerald-green park and unloaded our little barbecue. The meat had marinated in a cooler on the drive, and we cooked up juicy slabs of chicken and steak. We were soon joined by Brian's friends from work and their friends in the spot next to us. When it was time to go to the game, we walked to the stadium and hit the bookstore on the way to purchase some OSU gear. I was initially very concerned because the afternoon started out very cloudy and cold, but the sun soon emerged and I didn't end up getting frostbite after all.

The game was not the most exciting match I have ever witnessed, but I enjoyed it, anyway. I admit that the most entertaining part of the whole experience was the group of bear-sized gentlemen in front of us. They enjoyed an impressive array of snacks and smokeless tobacco and continuously spat at their feet into a brown reservoir of Copenhagen under a layer of floating sunflower seed husks. One of the men in their party, whom I named "Mr. Random-Man," shouted insults at whomever was in front of us on the other side of the retaining wall. Sometimes it was a player practicing kicking a football into a netted cage. Sometimes it was the crowd control monitor. Sometimes it was the cheerleaders. As the game progressed, his comments seemed to become more random and more frequent. I wondered what the cup they passed around contained. He also freely exchanged the name of Pocatello, Idaho for "Poke-A-Fella," much to the delight of the visiting team. Another man in this party, who was apparently trying to look tough in his oversized novelty football jersey, took off his hat and revealed he looked exactly like Mr. Weatherbee, the principal of Riverside High School, from behind. The young man of skinnier stature in the group had lips that peeled back to reveal a wall of pink gums and tobacco-yellow teeth when he smiled.

Once the game had finished and Idaho State was thoroughly beaten, we walked back to the truck and began a drive down dark highways in bright rivers of horrendous traffic to our favorite casino. When we arrived, we were easily spotted in our orange Oregon State gear and were greeted by people who wanted to know the final score. After freshening up in our room, we hit the casino floor. Brian hit the craps tables, and I hopped from slot machine to slot machine. After a dinner of fried food (oh, how I miss fried food) at the cafe at nearly 1 a.m., we hit the sack. In the morning, we started all over again, and I walked out $150 richer.

Sunday was my father's birthday, and we stayed for dinner at my parents' house when we made it back to town. It was good to see Erik, and Brian and I agreed he looked bigger somehow than the last time we saw him.

I was in Erik's way yesterday, and he said, "Excuse, mommy" as he went past. His language is evolving now at light speed. Tantrums are becoming more frequent, which scares me. I can't determine what is normal and what is Williams, although I suppose it doesn't make much difference. I only wonder because they are sudden and seem completely out of character for Erik. From what I have read, with the correct response, they will diminish with time, and angry outbursts followed by feelings of great remorse are quite common with this syndrome. As I sat in front of a slot machine this weekend, I couldn't stop thinking about him. Even mindless gambling isn't mindless anymore for me, as my brain no longer shuts off. No matter how far we travel or what we do, the brick in my brain that is WS is palpable and something I must carry with me at all times. Some days it feels lighter than others, but it is always present.

It was good to get away, but it was good to come home, too.

I sure missed that little guy.

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Friday, September 14, 2007

Precious Moment

The sun began to sink in the sky and flooded through the living room windows yesterday afternoon. Erik played quietly with his toy tractor on the floor.

Suddenly, I overheard him blurt out, "HELLO, ERIK!"

Curious, I looked his direction just in time to see he had greeted his own shadow.

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Wednesday, September 12, 2007

First Day

Okay, I admit I have been a little more stressed than usual regarding Erik's first day of preschool at the tender age of 2 (he's 3 soon). I worried about the fact he isn't toilet trained, can barely hold a crayon, and doesn't always express his needs, especially in a setting with other children, in which he often sits expressionless and motionless for hours at a time. After I was through worrying about those things, I then went on to worry about the fun things, such as getting his birthday photo session scheduled. I purchased new clothing and ordered new shoes in the next size to go over his orthotics for the first day of school. I then stopped worrying altogether, as I recognized I would be dropping him off at the very same building as before for early intervention and have been doing this weekly for a year and a half without much thought at all at the end of this time frame. It would be no different. No worries.

Oh, Nancy. You poor, naive girl.

Monday was Erik's IFSP meeting. Brian dropped Erik off at day care and met me at Erik's school. They neglected to tell us they would be completely retesting Erik and that he needed to be present. In the past, we had simply filled out paperwork. We were instructed to sit in that horrible little room with the two-way glass where our lives began changing almost two years ago. If I hadn't been so annoyed, it would have bothered me more, but I still was acutely aware of that little piece of me that I lost that day still floating in the air like a piece of morbid confetti, trapped and haunting that room forever. We rescheduled the second half of testing and filled out paperwork with the two therapists present (speech and OT/PT). Many of the skills they asked us about were just emerging in Erik, as he is quite young for preschool. I don't miss the days when we answered "No, he doesn't do that yet" to every single question asked.

Tuesday I awoke at 2 a.m. with a now rare case of insomnia. I simply couldn't sleep as Brian and the cat roared through the night snoring. The three hours I was able to catch before awakening for the last time were less than high quality hours. I skipped my workout and had a tiny plate of comfort food--a multigrain waffle, berries, and light syrup. I watched video blogs until the rest of the world caught up with me. My body tingled with exhaustion, and my brain felt as if it was full of smoke.

I dressed Erik in his new clothes, and he came out to the kitchen to ask for a glass of water ("Want some water-please-okay."). As he looked up at me, I experienced a strange moment. I saw his syndrome so very clearly in his face for just a second, making him appear like all of the Williams kids I know combined. I actually saw flashes of them all and could name some of them. He smiled at me, and it only became more pronounced. I felt like I had seen a group of friendly ghosts. I knew then that I was being reminded that the parents with kids like mine had gone through the very same motions that very day to prepare for school. I suddenly felt far from alone. It was strange, to say the least. Maybe it was purely due to sleep deprivation.

We loaded into the Jeep and we began to drive into the most perfect fall day. As we turned the corner in front of Erik's school, we saw the bus sitting silently in the loading area. A round man wearing suspenders stood guard in front of it. His face seemed to display a combination of kindness and sharp-edged strength. I was guessing this was Jeff, Erik's new chauffeur who would be taking him home. He greeted us as we passed and guessed Erik's name correctly. Erik stood with eyes as large as saucers, staring at the large man and the even larger vehicle. In fact, Erik said absolutely nothing and could only walk very slowly backwards as I coaxed him away from his new friend, through the double glass doors, and into the dark hallway of the school. Jeff waved the whole way.

Inside, Brenda, the family advocate, oohed and ahed appropriately over my son. She voiced amazement he had grown and graduated from the early intervention program as we turned the opposite way from his old classroom with the stream of older kids and their parents. Monday one of his EI therapists admitted they would be watching out the windows to catch a glimpse of Erik walking into the building. He is missed already.

Erik's classroom was busy. Two parents sat on a couch in the corner supporting a standing boy Erik's size and smiling almostly manically at him, seemingly completely oblivious to the chaos in the classroom. They wondered aloud if he should be put into his walker or wheelchair. I winced as I saw the room was full of wheels on strollers and equipment to help kids ambulate. Jeannie, Erik's new teacher, greeted me easily and accepted the plastic bag with two of Erik's diapers in it. As much as I was put off by her the last time we had met, she instantly put me at ease. I inadvertantly stepped into the path of a little girl with the familiar features of Down syndrome and a new bobbed haircut. I kneeled in front of her at Erik's level, and Jeannie introduced her as Abby. Abby was obviously not very taken with me but seemed slightly curious about who Erik was. Erik said nothing for a minute but then suddenly and confidently repeated her name. I wondered if Abby knew just what she was getting herself into. We continued into the classroom, and I sat on the floor by a very tightly-wound boy with blond hair. At this point, Erik was attempting to melt into my legs and become part of my attire. The anxiety was beginning to manifest in muscle tightness and an almost invisible tremor, and I could feel both of them against my body as he reacted to the other children in the room. I picked up a colorful, plastic block and inserted it into a musical toy but was immediately scolded by the boy who informed me I hadn't done it properly. In fact, he seemed highly annoyed and slightly agitated by the fact I had touched it at all. I suddenly knew this would NOT be Erik's best friend and scanned the room for Abby, who had disappeared into the miniature crowd. I was happy to see some kids with genetic syndromes of different flavors, some of which I was unable to identify, although Erik, of course, seems to be in a completely different group from children of any kind. He doesn't mix well with children in general while the rest of them seem to do it so easily. I reluctantly left him there on the floor in a state of shock next to Mr. Neurotic and informed Jeannie I was sneaking out. The women at the front desk called out, "Enjoy your morning!" and I bit my lip, looked back at them, and said, "I don't know about this!" They laughed, and I escaped into the sunshine, which was exactly what I used to do when I was terrified of the place. This time, however, I didn't want to go.

Once I reached my Jeep, I hurried inside and sat for a few seconds in the warmth of the sun. My heart was pounding, and I was shaking worse than Erik was. I did a quick inventory. Physiologically, something was happening to me that I was not comprehending. Was I sad? Not really. Happy? Sort of. Anxious? A little. I felt my tear ducts start production, and I grabbed my cell phone without knowing who I would call. My mother? A genetic counselor? Our pastor? Our accountant? Oh, God, Nancy, pull it together. No tears had spilled yet. I resisted the urge to drive to a nearby restaurant and have a Bloody Mary and watch Fox News in an empty bar. I called my business partner, confessed where I was as I began to pull into the street, and informed her I had no desire to fall apart. I told her that I would like to discuss today's work load. That did it. Much better. After our conversation and formulating a plan for the day, I stopped by the grocery store to buy the ingredients to bake a creamy, homemade hamburger casserole and an expensive bouquet of sunshine-yellow lilies, rust-colored mums, and blushing carnations for myself. I also restocked my dwindling supply of diet ice cream bars.

My cell phone rang three times over the course of the morning. My mother called once to ask if it would be okay if they waited with me for Erik to come home, which was a wonderful idea. Erik's teacher called twice--the first time to inform me that Erik was quiet but doing fine and the second time to inform me that he had been placed on the bus and was still quietly doing fine. I couldn't believe the sensitivity of these people! I made a mental note to write them into my will and constructed a shopping list of items I would need to bake them all cookies.

My mother and father arrived after noon with a transparent bag containing Subway sandwiches. We sat on the front porch and waited for Erik's bus to arrive after class. Soon thereafter, the shiny, banana-yellow bus pulled into the gravel drive and began making its way to the house. When it stopped, the door silently opened to accept me. I greeted Jeff and noted the oldies music playing on the surprisingly high-quality sound system. The scent of brand new vehicle met my nostrils. Everything gleamed. I couldn't see my son above the high-backed bench seats, and I took a couple steps down the aisle. There he was, grinning from ear to ear. Erik was the only one of the group left, buckled into his seat and looking even more relaxed than he does atop his favorite horse. Jeff unbuckled him, and I grabbed him to carry him off the bus. No therapeutic stair-walking today. Jeff offered to pick him up for school anytime in addition to bringing him home, and I thanked him.

And that was that.

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Monday, September 10, 2007

Blog Awards

Rosemarie at Voice on Miscellaneous Matters and Kathi over at My Life as I Live It both presented me with a brand new blog award. It's called the "Nice Matters Award" and is for "bloggers who are nice people; good blog friends and those who inspire good feelings and inspiration. Also for those who are a positive influence on our blogging world."

I admit I have been horribly negligent about passing on awards but wanted to express my gratitude to both Rosemarie and Kathi, two very amazing women. Thank you for calling me "nice!"

I was also nominated some time ago by my friend Camille over at Here in Holland for the "Courageous Blogger Award." She is a fellow WS mother I greatly admire. Camille, this award is indeed very dusty, but it is loved, and I haven't forgotten about it. That was incredibly sweet of you to do! I consider myself much more honest than courageous, but I accept this award in the hopes it will make me more of the former. I value our budding friendship more than you know. Someday we will have a glass of wine together and enjoy an episode of Sex and the City while the boys nap!

I have mixed feelings about blog awards in general. Don't get me wrong--there is nothing sweeter than getting some recognition from people I admire. However, I feel like it's 1987 all over again and I have been invited to go to lunch off campus with the popular kids with cars instead of enjoying lukewarm tater tot casserole in the cafeteria. Being included isn't a bad thing, but I can't ask everybody I love and admire to eat with me. That's the only problem I have with blog awards. I have met some of the most amazing people here and am thankful for every one of you. For this reason, I'll try to pass the awards to some new recipients as I express my love for all of you in "Willie World" (Williams syndrome) as well as the friends I normally visit frequently.

Today I'll pass the awards on.

Okay, I need audience participation here, as this is an interactive post. Firstly, to attend this awards ceremony, it is necessarily to picture me in a vintage Valentino gown with every inch of my exposed skin dripping in sparkling diamonds. I'm standing behind a Lucite podium, and Celine Dion has just left the stage after belting out one of her haughty but grand ballads (we will have a slap fight backstage later when I accuse her of completely faking her French-Canadian accent). Of course, as I announce the recipients of each award, I fully encourage enthusiastic applause. Hopefully, my performance will be of higher quality than Britney's at the Video Music Awards last weekend. And I promise I will not lip-sync. Or sing!

The recipients for the Nice Matters Award are:

Stacey at Confessions from a Scrapbook Junkie. Funny story here. I lived virtually next door to this woman but have never met her. She has now moved to the next town, and a mutual friend hooked us up in the Blogosphere. We are planning on lunch soon. I highly recommend her story about her bald chicken Lucy as well as the one about her hurdling a fence in a very delicate, advanced state of pregnancy. She has a very tender heart for humans and animals alike, even the rabid ones without plumage. If you scrapbook, she has some great tips as well.

Lazy Blogger. His home base is in the Midwest, but he and his wife travel often and post about their adventures, often detailing the history of their region of interest. I love to escape from my world from time to time, and I travel vicariously through his blog. He has dubbed himself "Lazy Blogger" because he doesn't participate in the usual silly Blogosphere activities but has shown me nothing but kindness through e-mails and posts (he's less lazy than he lets on...shhhh).

Leslie at Super Duper Jack. She has an almost 4-year-old son who happens to have Down syndrome and weaves a beautiful family story via her blog. The photos alone are worth stopping by to admire. They are a gorgeous expression of her love for her child. I am anxious to read more about Leslie and her family.

Michelle at Big Blueberry Eyes. Her daughter has Down syndrome as well, and, again, the stories and the photos she offers to her readers are beautiful. Her husband, Joe, has recently departed for military service, and she is pregnant with their second child. She offers information on Down syndrome as well as fun tidbits, such as recipes and stories about her family. Bravo!

Dawn over at Because I Said So. The world has recently discovered her through writing hilarious descriptions of eBay items for sale, one of which was a set of Pokemon cards unknowingly added to her shopping cart by one of her six children. She has been featured lately on radio talk shows because of her writing. If you need a good laugh, visit Dawn. Good lord, this woman is funny. She has actually brought some of her readers to urinary incontinence through her posts.

And now for the Courageous Blogger Award, which is "for those bloggers who are battling or have battled with physical and mental illness, those who are survivors of abuse, poverty, or who have overcome other challenges in life. Those who serve in the military or work/volunteer in dangerous situations in order to provide a service or to help others. This award is for the strong, the brave, and the courageous." I am passing it on to someone in Willie World who has been in my thoughts and prayers lately. Her name is Kim over at Ava's Garden, and she has a beautiful granddaughter with Williams syndrome. That's how we met, anyway. Since then, she witnessed a very traumatic event most of us could never begin to imagine. Kim, I hope you get your voice back soon. I don't recognize you to put pressure on your writing in the least, but I just wanted to know I think of you so very often.

This concludes my little ceremony for now. If you are a recipient today, the instructions state you are to pass on the love (7 for the Nice Matters and 5 for the Courageous Blogger) if you feel the desire to do so. Feel free to display your award on your blog!

I must go, as P. Diddy has insisted he can't start his after party on his yacht without my presence, and the limo is waiting.

(Raising glass of fizzy Krug Grand Cuvée)



Saturday, September 08, 2007

Only God Knows Why

I have had volumes to say lately but apparently lacked the strength or the knowledge required to transform my thoughts into words on my computer screen. I will keep some of my thoughts private, as I just can't imagine letting the sunlight hit some of them at all.

In essence, my brain is in overdrive before our IFSP meeting Monday and the first day of preschool Tuesday. I was invited to attend a fundraiser at the stables where Erik receives hippotherapy by a friend I met courtesy of our kids' respective syndromes. I declined via e-mail, as I was feeling incredibly grouchy and the last thing I felt like doing was writing this admittedly wonderful facility another personal check. After she received my somewhat vague and probably uncharacteristic response, she called to check on me. As much as I didn't feel like talking to or seeing anyone, it was surprisingly good to hear her voice. I told her I couldn't quite put my finger on the sudden, week-long bout of clinical-strength depression I seemed to be experiencing. It was then that she admitted to me that there are times when she stops and wonders exactly what in the hell has happened and how she came to be where she is today with her child. We agreed that we both were formerly under the impression these kinds of genetic anomalies our children have simply didn't happen to those around us and that we were exempt from anything besides having a perfectly normal child with beautiful fine and gross motor skills and every single one of their genes. Before Erik, I had no idea a person could be missing genes! What ended up occurring certainly wasn't included in the play books when we were selecting our nursery themes or sipping pastel-tinted punch at our baby showers. Before I gave birth, I once told a friend that the worst thing that could happen was to bear a child who was mentally retarded, as I wasn't nearly strong enough to handle it. I stated that with smug confidence, as I knew it simply wouldn't happen to me, anyway.

I was wrong about a lot of things. It can happen. It happened to us.

Yeah, yeah, I know. We established the fact that much of what has occurred simply sucks long ago, but the way she put it into words really struck a chord in me. She is a positive, strong person who rarely complains. There are just moments when moms like us look up from the routines we have come to consider perfectly normal (Windexing playground grit off of our child's orthotics, covering tiny ears to protect them from upsetting noises other children don't seem to hear at all, administering medicine to control problems that usually occur in the elderly, pulling our child from the sunlight more readily than other children to prevent serious vitamin D and calcium issues, and singing songs over thunderclaps as our inconsolable kid sobs) to stop and say, "Hey! Just wait a cotton-pickin' minute!"

Just what in the hell DID happen? Am I really doing all of this? Is this a dream?

It just doesn't seem real sometimes. However, after a moment like this, reality eventually crashes in on me, and I am coming to the realization that this is forever. There will be no end to it all--and that's if I'm lucky. Pardon me while I learn to breathe again so I can survive the panic attack I seem to be experiencing.

Last week I was feeling especially sorry for myself and my child. I squeezed my eyes closed and let my brain marinate a bit in my blue soup of thoughts, even though I know that's a dangerous and crazy thing to do. When I did this, I saw something completely new. I pictured myself 20 years from now standing in front of a neat line of Tupperware containers on my counter, and I was filling each of them with hot, homemade food to place in Erik's freezer. I stopped my daydream long enough to wonder if he would know how to operate a microwave without burning himself. Would his teeth decay from a poor diet or his brain's inability to allow him to successfully brush both sides of the teeth in his mouth? Would he know how to fix himself a meal? If I was freezing him dinners, he might be living on his own quite successfully, but I would have the same work and the same worry ahead of me. Maybe even more of both!

What would be worse? Having to let him go or not being able to let him go?

I'm afraid of burning out. Of being so jaded I won't love my son the way he deserves to be loved.

Most of all, I'm afraid of never being able to rest. Of watching my friends' children leave home for shiny, new lives and careers as I assemble peanut butter and jelly sandwiches for my baby. I could hardly bear to think about it anymore, so I opened my eyes again.

The future is unknown for every mother, of course. There is no way to know at this point what Erik will be capable of doing or what his life will be like. It's not really up to me in the long run, although I help him when I can. I don't normally ruminate on these things constantly. In fact, I consider myself lucky I may have a mama's boy on my hands. He is a great companion, and we make each other smile. Lately I have needed to think, and my depression seems to be lifting as I sort things out. Perhaps part of what I am feeling is being afraid to let go next week--and of never being able to really let him go at the same time.

I have been wrong about a lot of things.

Even in the midst of my depression-generated daydream, my face was dry, and I looked happy and strong. There is no question that I will do what I need to do. I hardly know the woman in my daydream with my own face, but I hope that we meet up eventually and become one and the same.

I can handle this, and I will handle this. I guess all I can do at this point is let go of his hand and see what happens.

I have been wrong about a lot of things.

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Wednesday, September 05, 2007

Teaching Tolerance

The following is from the WSA message board. I still peek in from time to time, and I thought this was a gem that begged to be shared. Hopefully, Megan won't mind. I admire how she handled this situation with class and kindness when it would have been so easy to give the customer the verbal tongue-lashing she so richly deserved (or accidentally pull pepper spray from one's purse and discharge it in her general direction). I sometimes wonder how I will handle situations like this in the future. I have already handed out one of my little information cards I carry with me everywhere in my own purse. I am glad I have more seasoned mothers' footsteps to follow, and I hope I exhibit a fraction of the class and grace they do.

I own a deli/convenience store in a very small town. Everyone knows my son Conner, and, believe me, Conner knows exactly who they are before they even get out of the car. The other day during our daily lunch rush, Conner was going about his normal routine. As I'm running the cash register, he works the crowd (everyone standing in line). My customers love every minute of it as well. Standing towards the end of the line is a middle-aged woman just watching every move my son is making. And as I'm cashing each person out in the line I'm noticing that she is now talking to herself about how this little boy's mother needs to come and get control of him. She just kept talking aloud so that by chance someone might agree with her. So, I just kept one ear and one eye on this situation going on with this lady. She just continued making rude comments about Conner. She went from one thing to another. "This boy is out of control. He needs to have a foot up his a** for how he is behaving." Now, mind you, I am trying to tend to my customers and still trying to pay attention to this woman. I'm getting very angry by this point. As she is getting closer to my register, one of my regular customers comes walking through the door. Conner, of course, goes running up to her and hugs and kisses her, then he decides to give everyone in line a hug and kiss and tell each and every one in the store "WELCOME TO (name deleted) DELI". I'm laughing as he is doing this. He does this all the time, and my regular customers all expect it when he's there. Just as this woman approaches my counter to pay, Conner walks up to her and reaches his hands out to give her a hug. Well, she ignored his approach by fumbling in her purse. Conner then looks her in the face and yells at the top of his lungs, "Give me a hug!" She looked at him and said, "where is your mother? Maybe if she paid more attention to you, you wouldn't have to beg strangers for hugs." Now you can all imagine the fire that was running through me. I collected her money then said, "Conner, come help mommy bag this nice lady's food." As Conner was deciding what size bag to use, I very politely said to her, "I'm very sorry if my son's behavior offended you, but this is who he is. It's called WILLIAMS' SYNDROME. (I pulled my pen off my apron and wrote it down for her) It is a rare genetic disorder. Conner has a number of medical problems as well as developmental delays, and socially Conner is above and beyond where he should be." She said, "Oh, I'm sorry to hear that. What is WS? I've never heard of that. Is it like Down syndrome? Is he slow?" I just looked at her and smiled. I handed her the paper and told her to look it up on the computer. I told her she would have a different opinion about my son after she learned what WS was. I am not religious by any means, but I so many times tell everyone that Conner was given to ME for a reason. He reminds me everyday not to take anything for granted. We do the best we can with what we have been given. Conner then yells, "Yeh, mom, that's right!" and, "Give me high 5." So, of course, I did. She took her bag and I told her to have a good day. People are so quick to make judgements. People can look at my son and know that something is just not right with him. You know they want to ask, but they never do. Personally, I just tell people that "He has Williams' syndrome." I am not ashamed or embarrassed. It opens the door for questions. I feel one of my duties as a WS mother is to educate people.

Megan, mom to Conner

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Sunday, September 02, 2007

Eternal Love and Waterproof Mascara

We made it to church today. I worked out quickly and showered, and then our whole family ran frantically around the house, wet from the shower and in different, very shocking stages of dress. We would barely make it on time. It turns out the clothing I wore to church last time is now the size of a circus tent on my new body. Today was the very first day I was not upset about being late for anything.

We haven't been to church in some time, but we are trying to get there more often. Although I consider myself spiritual, I am definitely not a typically "churchy" person and often struggle with the concept of organized religion for a variety of reasons, none of which I will go into here, but I am fairly comfortable attending the church I grew up in when I go. I feel it is extremely important Erik feels loved and accepted, and Brian and I both agree church will be important as he grows. Who knows? Maybe I'll learn something along the way.

We dropped Erik off in the nursery and received an electronic pager that would summon us back to the nursery if necessary. We were ushered to an empty space in a pew, and the pastor instructed the congregation to learn the names of those around us. This is normally a nightmare for me, but my new self-confidence has made things much easier. I exchanged pleasantries with the woman next to me and listened as the service began, noting the satiny banner behind the altar was the same one I had picked as the backdrop the day we were married over six years ago. It features a brilliant, electric blue cross. My favorite color. The pastor began to walk the width of the stage and get himself into the spirit of preaching. I thought, dangit, this new guy gets me every time, but surely this time would be different. There would be no talk or videos of the disabled, hymns with seemingly hidden personal meanings, or messages that seemed to be meant for me and me alone. Surely God is too busy to send me these messages each time I attend church these days. I have sat through many sermons in that same sanctuary, largely unaffected but appropriately prayerful, and walked out completely dry-eyed with a cookie in my hand. Hundreds of times. Today would be no different.

We attend the more contemporary service--not because we prefer it, necessarily, but because it is early. They tend to play more modern Christian music, a lot of which I don't necessarily care for but I am warming up to. As I attempted not to be distracted by the one very passionate, animated woman in the front row dancing and gyrating unlike any other Presbyterian I know, I realized there was an old hymn playing. One of my grandfather's favorites. "How Great Thou Art." Okay, I thought, that's a little strange during this service. I enjoyed the warm fuzzy and sang very quietly so as not to alarm the lady standing next to me with my desperate search for the correct octave.

And then the sermon began. The pastor began talking of the story "Eternal Love" by Karen Bender. He explained the story as being about parents of a developmentally disabled daughter in her 30s who finds love with a developmentally disabled man. It wasn't so much about the love between the two but more about the mother and her relationship with her child. You see, it was her job for years to care for her child, and she set her marriage and even her personal needs aside for years. Although her husband was woefully neglected, he patiently waited for her to come back to him. She felt off balance because she would no longer feel like she had control of what happened to her daughter. She couldn't imagine what she would do if she had to let go.

You have got to be freaking kidding me.

It wasn't long before I realized I was going to cry. I can cry quietly until my nose decides to emit rivers of snot, after which it sounds as if I am greedily consuming a 44-ounce cherry Slurpee. When I saw the woman on the other side of Brian crying even harder than I was, it only made matters worse. By the time the pastor reached the part of the story about the new bride running to her parents' hotel room for her mother's reassurance on the wedding night, I was a complete mess. The mother reassured her daughter that she had their unconditional love and approval and then watched her go happily back to the groom. She then allowed her own husband to hold her and comfort her for the first time in years.

Oh, God.

This is the point when the lovely woman next to me in the peach blouse plucked a Kleenex from the pocket pack in her purse and offered it to me. I accepted it gratefully, and as I blew my nose, I silently granted her permission to refrain from holding my hand during the closing song.

I survived the service, and we headed down the hall to pick up Erik. We were told he had been taken to a private prayer room (I didn't even know we had those) because the environment was too loud and he became upset. I must have looked very alarmed, as I was instantly offered assurances he was fine. I plucked him from the arms of the girl who was holding him, and we made our way out into the sunshine, feeling a little bit more connected with each other and the world.

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Saturday, September 01, 2007

Chapter Two

Teacher (watching me write down Erik's date of birth): Oh, so Erik's 4?

Me: Uh, no, he's going to be 3.

Teacher: Oh. I'm not very good at math. That's why I teach preschool.

The weather has finally transformed into something much less volatile. The evening I posted last brought probably the most violent thunderstorm I have experienced in my lifetime. There were simultaneous thunderclaps and flashes of lightning over the house, shaking everything inside. It was like the unrealistic storms you might see in old horror movies. All we needed here to complete the evening was Vincent Price. Our power was out for nearly three hours, so the house was filled with candlelight and the sound of the football game on our little camping radio. Some fires flared up nearby, but the drenching raindrops fell again, extinguishing them before they caused any harm. I retired early under the influence of an entire Unisom tablet and was shaken awake several times. Where was Erik, you might ask? He was so exhausted from the night before that he slept through the entire thing!

We had hippotherapy yesterday. Erik looked like John Wayne sitting on his horse this time when he used to look like a precious, little cowboy-fetus who needed rescuing. His body seems so strong now. Besides a little poopy pants incident in the parking lot, it all went quite well. After lunch, Erik and I went to see his new classroom and talk with his teacher. She was nice, I suppose. When I initially met her a month ago, I liked her. However, this time she struck me as unorganized and scattered. She was unable to locate her business cards, and there were no adult-sized chairs to sit in to fill out paperwork. She instructed me to sit in "the red chair," a lilliputian piece of furniture in front of a table perfect for tiny tea parties. I'm almost 5'10" and have a very sore navel, so folding myself in half like a contortionist was not on my list of things to do. I obliged, however, and hunched over a stack of papers, signing where instructed. Some sort of classroom helper sat to my left and said almost nothing. I was quite impressed with the new speech therapist from Maine, who came to join us halfway through our meeting. He was a handsome guy with pewter-colored hair and lines on his face from smiling kind smiles. The teacher asked me to explain Erik's diagnosis to him, which went better than it ever has, even though it has been months since I have done this. I sounded like I was reading out of a book, but it all flowed automatically from me as the women nodded a little vapidly. I explained all of the points I wanted to, and he sounded quite interested. This man seemed highly intelligent and quite interested in Erik's strengths. Erik played with trucks and doll strollers quietly as we talked. When the speech therapist said goodbye and stood up, Erik looked up and said, "See ya next time." The man was quite surprised and laughed.

Brian attended the meeting on IEPs last week, as I was at hippotherapy earlier in the day and was completely burned out. He was told that the school district staff members are instructed not to offer extra services to parents of children with special needs unless they specifically ask for them--all in the interest of saving money. I shudder to think what happens to kids like Erik when their parents aren't as involved as we are or simply don't care. I am going to try not to think about that, because my heart will split in two.

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