Erik Quinn: The Heart of a Family: February 2007

Wednesday, February 28, 2007

Past Perfect

Dad, Mom, & Me (I'm a fetus) -- circa 1970
I have been thinking a lot lately about the past. On my daily drive to pick up Erik, I pass beautiful and outrageously expensive Colonial and prow front homes that line the river. I see historic buildings being razed by new owners and newer, much fancier structures rising from the destruction. Remodeling here seems to mean gutting everything until there is only a gluttonous skeleton ready to consume state-of-the-art appliances and furnishings. Heaven forbid something is ten minutes old here! My hometown as I knew it in the glorious 1970s and 1980s is long gone. For instance, the mill that churned out wood products throughout my childhood is hardly recognizable now. It's a trendy collection of shops and restaurants. Instead of the sound of the 5 o'clock whistle I grew up hearing through the pine trees as I played, there is the sound of impatient drivers beeping their horns when a parking space is stolen from them in front of Bath and Body Works. Don't get me wrong--there are some fabulous restaurants and shops there I enjoy on a regular basis, but I fondly remember the days my family rode our bikes there in relative silence as the sun sunk behind the mountains and the ducks followed us along the riverbank. I will never forget those evenings. Although it's sad the past is gone, we are creating new memories with a new backdrop now, and I'm sure I'll cherish those, too.

My parents' house looks pretty much the same as it did when I was growing up. In fact, when my mother's oven went cold in the middle of cooking Thanksgiving dinner last year, she wondered aloud where she would find another oven in that particular shade of poppy red to match the fridge. She loves her kitchen, and although the sink, linoleum, and counters have been recently very tastefully updated, she sees no reason to give up the appliances that she loves. Frankly, neither do I. When they want to improve something, they enjoy doing it, but they do not let the latest trends dictate what they love. I have great respect for that. My father's 1973 Chevy pickup gleams in the driveway as if it just rolled off the lot, and the 1967 Camaro he bought brand new (see photo) is equally cherry, resting safe in storage. They have taught me to appreciate and take care of what I have as well as to appreciate the fun, new, shiny things the world has to offer. We also greatly cherish what the old things in our lives remind us of. My brother and I grew up exploring the quiet, dark upper floors of the museum where my parents work, and we learned about local history out on the sage and juniper-dotted desert. We had so much fun. When I turned on the television last Halloween, I saw my father being interviewed on the news about George, the ghost that haunts the museum where they spend each day working and teaching others about history. George definitely makes his presence known to my parents by bringing them lost items and helping them in their research. Our family has never been afraid of touching and honoring the past. Even Erik enjoys his meals in my old wicker high chair and has had many diapers changed in a family baby buggy that is nearly a century old.

After Brian and I got married, I sold the house I bought five years earlier and was surprised to hear from the Realtor that it was a shame my kitchen had not been updated. Looking around, I realized things hadn't been replaced since 1988, when the house was built. I was completely blind to it because I was perfectly content with what I had and things were built to last back then. It also makes no sense at all to me to discard things that work well to have the latest and greatest. What a waste! I guess the apple doesn't fall far from the tree.

Yesterday I asked my father to retrieve my doll collection from the attic. My parents kindly kept virtually every toy I ever owned. He brought down three dusty boxes containing my formerly most valuable possessions. Everything looked as if I had just packed it away minutes ago. We had a great time going through my things and remembering all of my dolls' names. I found "Baby This 'n That," a doll that waved her arms like a dying cockroach when you squeezed her white baby booties. Unfortunately, my 1974 "Baby That Away" met her demise not long after she was received one Christmas. My little brother accidentally dropped her on the hardwood floor of my bedroom, the hidden door in her crotch flew open, and plastic shrapnel and batteries exploded out of her innards. What a horrific sight! She never went "that away" again. When I moved her arm yesterday, the plastic disintegrated, and her whole extremity came off in my hand. I also noted that most of my dolls with nylon hair looked a bit like Phyllis Diller. Apparently, being in an attic for 30 years gives you the worst case of bed head ever. The best treasure we found required no batteries at all. My teddy bear (Bear) and Snoopy emerged from a box, all of their fur loved off. Bear lost his felt tongue long ago and in its place was a red smile made of yarn lovingly stitched in place by my mother. Both of them have sutures in various locations all over their bodies where they wore thin. I have to thank my parents for keeping things for me and going through them with me yesterday. It brought back wonderful memories.

It's fascinating to take a look into the past. More people should. Either they don't because it brings back unpleasant memories and makes them uncomfortable or they are too busy living in the moment working to acquire the latest and greatest things, throwing the past away without a second thought. Maybe people update things so often to forget. I find that incredibly sad. I am lucky to have many more good memories than bad, and I realize that not everybody does. Of course, I suppose I'm pathologically nostalgic. I prefer my house and the things I own to have some ghosts in them. Will I keep every little memento I acquire and live in the past? No, but my heart breaks a little bit to give some of my old things away and discard chubby, broken-off doll appendages. I will forever hang onto some of the memorabilia from my childhood--not because any of my old things have any monetary value but because they remind me of who I am and how I got here. I adore shiny, new, fancy things, but I'm not afraid to appreciate what I have and take care of it for a lifetime. That's what my parents raised me to do.

Thanks, Mom and Dad.

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Tuesday, February 27, 2007

Quote of the Day

Disability is a matter of perception. If you can do just one thing well, you're needed by someone.

-- Martina Navratilova

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Monday, February 26, 2007

Complaint Du Jour

Erik and I returned from a shopping trip to Target. We had a great time being out and about. I purchased some outdoor toys, including a tiny rake, sifter, and shovel. I wouldn't be surprised if he found something of historical significance lying in the dust around our yard, as there is an old military camp across the street. I am looking forward to playing in the dirt with him when things warm up. I also was pleased to see a magnetic drawing board on sale and bought one of those, which he finds fascinating.

Excuse me while I vent now.

I would like to take my son out in public just once without a complete stranger approaching us and telling me how red Erik's cheeks are. Just once! Yes, I know this is a seemingly trivial matter, but please allow me the luxury of venting about something superficial for once. I am weary of having people unknowingly remind me about my ongoing battle with Erik's eczema. It happens on a daily basis. Sadly, I'm not kidding. Yes, I realize he's as cute as a button with his darling red cheeks, but come on, people! I fight his skin problems on a daily basis with prescription creams and preparations that feel and smell like lard. I never really had the opportunity to use all of the sweet-smelling creams and potions made for babies I received at my baby shower or that beckon to me on shelves from their cute packaging at the store. Our creams are located in the geriatric skin care section, and they don't smell like lavender or baby powder. The backs of his arms, while not strikingly erythematous, feel much like the skin of a freshly plucked chicken. His face flakes and turns angry scarlet if I forget to apply hydrocortisone. His legs are covered with more subtle but equally persistent bumps. During the winter I just can't seem to get a handle on this and have halfway given up. A lot of the kids at Erik's school have the same slapped-cheek appearance. Some of them have weeping sores all over their bodies from cases of rampant eczema. In parent group, we often share war stories of our battles with this particular type of mysterious dermatitis. We have tried dietary changes, wet pajamas, oils, creams, and natural cure-alls to no avail. It's aggravating.


It seems like just yesterday perfect strangers were coming up to me and commenting on how ORANGE my kid was. At that time, he had problems with eating solid food and was full of Gerber dinners, which are packed with carrots, resulting in a cheery, day-glo hue. The last time I heard, "Oh my! He must be crazy about carrots!" I could feel the pulsating walls of the arteries in my temples threatening to give way and kill me on the spot. Being a generally polite, nice person, I simply took a deep breath and smiled pleasantly while I stood in the checkout line and indulged in a delightful little fantasy about producing a bejeweled .38 from my diaper bag. In the end, though, I found myself ecstatic when I saw that one morning Erik's Sunkist-orange color had completely faded away.

But for now we are red. Someday when Erik is a normal color I'm sure I'll reminisce about such classics as -- "Oh, my! It must be cold outside! Your cheeks are sooo red! How precious!" OR "I have NEVER seen such rosy cheeks!" I have been tempted to tell them Erik's simply drunk, but I know that wouldn't be wise. Tempting, though. My sense of humor is not for everyone.

Sigh. Yes, I know. They mean well.

On one especially trying morning at the physical therapy office, I actually told one woman who commented on his blush, "Yeah. It's a rash." I immediately felt terrible after I said it, but sometimes I just can't control myself after the second, third, or fourth time in a single outing hearing the same comment about my son's poor, tortured skin!

Hey, at least he's not orange anymore.

Sunday, February 25, 2007


Samantha & Erik
Our trip over the mountains to visit my soon-to-be 90-year-old grandmother was placed on hold because of an approaching storm that looked like a pulsing, chartreuse booger on our meteorologist's radar screen on last night's news. It did snow here all day Thursday, but we don't have much to show for it now. Thursday was the day we had pool therapy in the morning and a home visit just an hour after we got home from that. It was insane. On top of everything, I grocery shopped, worked, shoveled snow, cooked dinner, and rescued a stray dog that refused to leave our property and sat in the storm all day. I am happy that we survived the week, although I'm now exhausted. I'm glad that our IFSP has been rescheduled for March.

Erik stacked some blocks this morning, but he is more into demolition than construction. Last night I built towers, and he systematically destroyed them Godzilla style. Each time a tower met its demise, he would exclaim, "Oh no!" or "Oh nuts!" He later fell off the love seat like a seasoned stunt double, crawled up onto my lap, and said to himself, "Poor baby!" What a character. I laughed a lot yesterday.

Since my computer's hard drive kicked the bucket, I had to reconstruct an updated backup of my blog to store on a CD. It was interesting, to say the least, to revisit what I have written here. I have nearly 200 pages of written material now. I was genuinely surprised to see just how far I have progressed over the last year. My bad days are few and far between now, although they still sneak up on me. I am glad I have a place to sit and write how I feel. I cannot share my feelings verbally to this degree with anyone, even if I pay them good money to listen. I have always had a difficult time expressing how I feel verbally.

Most of my fear now comes from the unknown, especially when it comes to Erik's future health. I have learned to take one day at a time in that regard and enjoy my moments with him as fully as humanly possible. I can also do nothing in terms of predicting what his level of functioning will be at this point except for hope for the best and attempt to teach him the best I know how. This requires a great deal more creativity than I anticipated in terms of helping him understand the world. I imagine it's hard for some people looking at my life and reading how I feel to understand why I write what I do. I can't describe how difficult it is to simply enjoy things like most mothers when I am being instructed how to teach my child to speak by speech pathologists, how to walk by physical therapists, and how to eat, dress, and even play by occupational therapists. Erik and I are both being evaluated and scored. The truth is, this has simply sucked a lot of the normal out of being a mother. No, I don't enjoy things like most mothers. I never will. However, I feel less and less sorry for myself as time passes. Why? What I discovered long ago is that I actually treasure each smile, word, step, and accomplishment more than most mothers ever will. Watching Erik reach each milestone is simply extraordinary, creating in me a first-man-on-the-moon-type of feeling in my heart, releasing a thousand butterflies in my stomach, and making me feel I could easily walk on air.

I remember being pregnant with Erik and driving home from the hospital after we found out we were going to have a boy. I have always wanted a son, and even though I was alone in the car, I actually said out loud, "God, I'm not worthy of this!" I had tears running down my face, and I was the happiest girl on the planet. I wanted to fall to my knees. At that moment, I was imagining a very different life for our family than the one we live now. I had no idea where Erik would take me and how many wonderful people he would bring to me. Despite all of the challenges that we face, I still feel the same way every day. I'm incredibly blessed to know this little boy, and it's a true honor to be his mother. I'm still not close to being worthy of such an incredible gift and such gigantic responsibility, but I take great comfort in the fact that I know I am doing my very best.

As Erik would say, "All right! All right!"

Sheesh. Somebody pass the freaking Kleenex.

Today I plan on watching the storm swallow the mountains, and I'll start a batch of chili eventually. You are welcome to join me! I wish you all could.

White Chicken Chili

1 T vegetable oil
1 chopped onion
3 cloves crushed garlic
1 can (4 oz) diced jalapeno peppers
1 can (4 oz) chopped green chiles
2 tsp ground cumin
1 tsp dried oregano
1 tsp ground cayenne pepper
2 (14.5 oz) cans chicken broth
3 cups chopped cooked chicken breast
3 (15 oz) cans white beans
1 cup shredded jack cheese

Heat the oil in a large saucepan over medium-low heat. Slowly cook and stir the onion until tender. Mix in the garlic, jalapeno, green chiles, cumin, oregano, and cayenne. Continue to cook and stir the mixture until tender, about 3 minutes. Mix in the chicken broth, chicken, and white beans. Simmer 15 minutes, stirring occasionally.

Remove the mixture from heat. Stir in the cheese until melted. Serve warm.

(You are what you eat. I like mine hella spicy. You can substitute mild green chiles for the jalapenos to tone it town, if you'd like.)

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Thursday, February 22, 2007

The Girl on the Other Side of the Glass

BREAKING NEWS: Erik drank from a straw for the first time yesterday! I jumped up and down.

This week the three of us went to a nearby pizza parlor for an Oregon State University sports presentation. I usually stay home to care for Erik, but the setting seemed casual enough for Huggies and sippy cups, and I was extremely hungry for a few slices of Canadian bacon and pineapple. After a quick assessment by the admissions staff at the door, Erik was admitted free of charge. That was a gigantic mistake on the university's part. Despite his size, he ate man-sized servings of pizza as fast as I could chop it up and present it to him. We all did a great deal of Van Damage to the buffet table. When the social hour came to a conclusion and the presentation was about to start, Erik and I excused ourselves and headed for the play room, a wood-paneled room filled with screened-in, alarmingly dusty 1980s playground equipment, various video games, and a miniature electric merry-go-round. I noted it was the first time it was not 4000 degrees inside. Usually the combination of electronics, red-cheeked children sweating buckets, and lack of circulation creates a dripping rain forest in this particular room. I took in a deep breath of cool air and realized too quickly that although the temperature was perfect, everything still smelled like thousands of feet. Shaking off my disgust, I made myself comfortable on a wooden bench and let Erik stand in front of me, free to do as he pleased. He only clung to me tightly as children zoomed by, screaming like banshees and throwing stray balls from the ball pit at each other. Erik was less than impressed. Frankly, so was I. He began his anxious rocking and threatened to melt down, but he held it together for a few long minutes before the inevitable bout of scarlet-faced sobbing came. I scooped him up and took him out of the chaos, closing the door behind us. Luckily, the extra event room was empty except for tables of pizza and beverages, and the restaurant staff said we were welcome to make ourselves comfortable there. We found a chair next to a bank of windows looking into the play room and watched the children play their demonic little games, all of their screeches muffled by panes of glass. It wasn't long before a hyperactive boy pounded on the lever on the emergency exit and an alarm began to shriek. I muttered a quick prayer of thanks that we were still not sitting on the bench in that room.

I admit that sometimes I wonder if Erik was made just for me. I have said it before, and I'll say it again. I don't believe in the whole "God chooses mothers for special children" thing. I know a lot of people do and I completely respect that, but personally I never bought into that theory. For the most part, when I have been the recipient of that ancient platitude, it has stung badly. I felt isolated and singled out, especially when the well-meaning person telling me this has a gaggle of typical kids. On the other hand, I freely admit there are times I know I couldn't have a child more suited for me. In this particular case, we were both happier away from the noise, quietly drawing pictures of our family on napkins pulled from our table dispenser and enjoying just one more slice of Hawaiian pizza together. We sat like this for an hour, and my lap began to go to sleep under 30 pounds of a pizza-stuffed Erik Quinn. A little boy came to the opposite side of the window to look at Erik, stuck his tongue out, and crossed his eyes. I waved back at him, and he went on his way. When we glanced up to check on the action, kids scrambled all over the dirty, giant playground tubes like nimble ants on an ice cream sandwich. The loudspeaker occasionally blasted out diners' order numbers, making Erik and I jump. To ease the tension, I would repeat the numbers in different voices, trying to make him laugh. We ARE undoubtedly perfect for each other. Maybe this is just sour grapes. Would I be happy with a typical child? Yes. Do they appeal to me anymore? Not really, although there will always be an ache in my heart for what could have been, and I will forever wonder what Erik would be like with just 20 more genes. I can even see why some people think I was chosen for this. However, don't expect me to think this is fair. Ever.

Tuesday, February 20, 2007


The girl sitting beside me
tells her story
of her toddling boy
with the slanted face
and the holes in his heart.

Oxygen fills his nose nightly
while he sleeps,
and an alarm rings
when the sighing stops.

The woman across from me
prayed for me last week
because I was too quiet
and my face was too pale.
She says she had that look once.

This girl sitting beside me
explains she gave life to her son,
she will care for her son,
and she will bury him when all is done.

There are reassurances murmured
about advances in medicine
and how miracles will happen;
but we turn to each other,
and our eyes finally meet.

I see it there.

The truth is in her grasp,
and she is searching for peace
with what will come,
all the while patiently nodding
polite maybes back at them all.

Her stoic face is calm and dry,
and as the topic changes,
I am the only one to tell her
that this is so tough.

Then I am quiet and pale again.

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Sunday, February 18, 2007

To Erik

You are small but powerful.
A superhero in concentrate form,
A pajama-clad streak traversing the room at light speed --
A shooting star of my very own.

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Saturday, February 17, 2007

The Love of Language

Erik's language is suddenly peppered with adult phrases. Don't call the authorities just yet, though. They are all G-rated phrases thus far. What I find bizarre, however, is hearing them coming from a small boy who is light years behind in terms of every pediatric milestone known to man. After all, at 17 months, he had yet to say his first word. What is especially striking is that most of these phrases would be more commonly overheard on league night at the bowling alley or from a man who has been on his feet all day and is seeking a quiet, nag-free evening in his La-Z-Boy.

Over time, Erik talks progressively more to himself as he plays. On more than one occasion I have been listening to him play in his room and heard him suddenly exclaim, "Come on, baby!" He was hardly able to string two words together a few weeks ago but is now trying out new words and short phrases. This is where we have yet to determine how much he actually understands. From what I read, many people with WS use memorized words without truly understanding their meaning and often fail to use them in the precisely correct context. In short, their memories are incredible for language when their actual comprehension of words sometimes falls short.

For instance, Erik recently correctly identified every color on each page of a book about colors, including gray, and I was in the process of having a happy cow until I realized he had simply memorized the book and seemed to have no comprehension of the concept of colors, let alone how to identify them. I don't want to be a skeptic about his abilities like I was in the past, but I am cautious about what I accept to be true, as we have some scars that go with this diagnosis that instill a great deal of skepticism.

But then sometimes I wonder, as there are little moments like this:

Nancy (watching Erik playing with mops hanging on the wall): Erik, please don't touch those, honey. They might fall on your head.

Erik (as he leaves the room and firmly shuts the door behind him): All right! All right!

Nancy: (speechless)

You be the judge.

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Wednesday, February 14, 2007

Save the Date!

We are getting closer to our local 5K run/walk to raise awareness for Williams syndrome. This event will take place on Saturday, April 28, 2007, which also happens to be our sixth wedding anniversary!

Please e-mail me to let me know you wish to participate, and I will put you on the list to provide you with more information as it becomes available. Because it is still early, the information I have is currently limited, but I wanted to let everybody know so they can mark their calendars and do some advance planning. We should have a large group of friends and family this year, and there will be at least three children with WS participating, including Erik.

We hope you can join us. You are welcome to run, walk, or stroll the entire 5K. It's also perfectly acceptable to sit in some gorgeous surroundings and simply watch the festivities! Everybody is welcome. I had some Live Strong-style bracelets made for "Team Erik" for this occasion, and actually sold one at my hair salon for $50, which went to the WSA Valentine's Day fundraiser in Erik's name. It's a great way to raise awareness, and I will bring a box of them!

I attached a video of the race last year. This was only one month post diagnosis, but we still had a wonderful time. It was an extremely emotional day for us, and I cried many tears, but I left feeling great.

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Tuesday, February 13, 2007

Happy Valentine's Day

I'm sorry, but this made me giggle. Uncontrollably.

Thank you so much for caring enough to follow our story. There are also those of you out there who have bought me margaritas, delivered home-cooked meals, made me laugh until I cried, hugged me tight, loaned me a shoulder to cry on, sent me cards, prayed for me, taken me dancing, brought me flowers, and helped care for Erik. Thanks for all that you do.

I love all of you, and I know what a very lucky girl I am to have you in my life.

Happy Valentine's Day!


A hundred hearts would be too few
To carry all my love for you.

-- Author Unknown

Monday, February 12, 2007

Here We Go Again

Our individualized family service plan (IFSP) is scheduled for Tuesday, February 20th. We meet with therapists who have been taking extensive notes on Erik's physical and mental abilities for the past six months. There will be a panel consisting of an early intervention specialist, a physical therapist, an occupational therapist, and a speech pathologist.

After Erik's last IFSP, I feel a little less like vomiting in the nearest trash can than I did last time, but the thought of this meeting still makes me feel uneasy. There's nothing quite like having your child under a microscope and receiving a score as if we participated in some sort of twisted Olympic event.

I can't believe it has been almost one year since our first evaluation at the early intervention facility. It seems like yesterday. I had no idea what it all meant, and it seemed the therapists were talking in a foreign language. To be quite honest, I didn't pay much attention to it all, as I felt like all of it was merely temporary and wouldn't apply to us. Towards the end when one therapist stated, "We hope you won't be devastated by what we are about to tell you," I remained deeply rooted in denial and kept smiling, assuring her we were perfectly fine with anything they had to say. I failed to predict that everything in our world would come crashing down on us a mere one month later upon receiving Erik's diagnosis.

The following is taken directly from Erik's primary IFSP report dated 02/23/06. He was 16 months old at the time.

Nancy reports that Erik was late in his developmental milestones. He babbled with sounds as a baby but has not said his first word. He is a healthy child with no reported ear infections. Erik does not like thick consistency foods and gags and chokes when fed. He passed his newborn hearing screening on the fourth attempt at six weeks. Mom reports that he is very sensitive to sound. There are no concerns with his vision.

Erik came into the evaluation with his mother via stroller. She wheeled him into the room as he was watching the wheels on the stroller. She then took him out of the stroller and placed him in hands and knees on the ground. He immediately crawled over to the carpeted areas, and cars were placed in front of him. He picked one up and began to spin the wheels. When the examiner came over with some toys, he showed interest but began by putting all new toys into his mouth. When his father entered the room and sat at the table, Erik was asked, "Where's daddy?" and after several repetitions of this, he looked over at his dad. he would take many of the toys and spin them either on the ground or with his hand. He rolled various toys on the ground as well (bell).

Erik does display characteristics similar to children with autistic spectrum disorder. However, further evaluation is not suggested at this time. Erik's scores were more indicative of a child having cognitive difficulties.

They apparently didn't see what was coming, either.

There have been a lot of changes since then. The W bomb dropped almost a year ago, and the dust is settling into managaeble drifts. Erik is walking and talking like a champ now. A year ago he was still acting like a drooling infant when other kids his age had been walking and talking for months. A couple of months after this report was produced, Erik began to walk and made great progress in his developmental milestones, which provided me a lot of hope. I desperately needed hope at that time, and he came through for me in a big way.

Because I'm a little nervous, I looked over the next IFSP report from just six months ago. It seems I don't have much to fear.

Our goals included playing with toys appropriately (check), increased independence in eating with a utensil (piece of cake), interacting more with peers and tolerating noisier, busier environments (hoo-RAH), standing and walking with flat feet/walking with one hand held (yup), fitting objects into defined spaces/using pincer grasp/placing rings on a tower/scribbling (checkedy check check), following one-step directions without gestural cues (affirmative), pointing to named objects (of course), calling people by name (roger that), and asking for what he wants (heck, yeah).

I hate watching my kid struggle. There are gigantic obstacles he is facing physically and mentally. We now have some really great days and some really crappy ones. However, more importantly, he is consistently and genuinely Erik through them all -- loving, sensitive, and hilarious. He always has been, even that day we sat in front of a two-way mirror, unknowingly taking the first step of a very long journey together as a family.

His scores were abysmal, but his personality was still quite apparent, even on the printed report we received in the mail days later.

Erik is adaptable, social, happy, and overall good natured, imitative, independent, and interested in other people. He has a wonderful sense of humor.

Yup. That's my boy.

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Saturday, February 10, 2007


I am happy to report that I was reunited with my computer yesterday. I think it had a circuit board-eating bacteria or worms of some sort. The only freaking part left on it I recognize anymore is the CPU. All other parts, including the case it lives in, were completely replaced, and we are slowly getting to know each other again. I worked into the night yesterday and very early this morning to help my poor coworker/partner in crime get unburied from my absence all week. It's nice to be missed.

Yesterday Erik and I drove to the computer store bright and early after breakfast. I winced as I opened the door, but the technician had honored his promise to disconnect the buzzer on the door. After I paid an exorbitant ransom, I liberated my PC and headed home to feed Erik a quick snack before my friend Shaena arrived to head out with us to the hippotherapy facility. The farm is located a mere five minutes from our house, down a country road lined with glossy, white fences. The entrance was clearly marked with a beautiful sign, and we drove down a narrow asphalt lane to a giant, unassuming metal building snuggled up next to an unattractive modular trailer-type building with a wheelchair ramp to the door. We poked our heads into the trailer, where a boy I recognized from Erik's class was sitting on board swing suspended from the ceiling. Ms. G, Erik's therapist, was working with him. She instructed us to go through a door on the side of the metal building, where we found ourselves in a small room. There was a messy kitchenette with a sink choked with dirty coffee cups, a small table and chairs, and a wonderfully comfy, voluptuous love seat that looked weirdly out of place in front of a smudged window featuring a fantastic view of a gorgeous indoor riding arena and horse stalls constructed of blond pine. The earthy scent of horses permeated everything and made me want to sneeze. Shaena, Erik, and I explored the room and then made ourselves comfortable. Erik kissed a couple of the stuffed horses resting in a pile in the corner, smacking his lips enthusiastically. Staff members made their way through this room and out a door leading into the arena, smiling and greeting us as they passed.

Soon Ms. G joined us, leading us out onto a concrete walk lining the mucky-looking arena. We passed a couple office windows framing people hard at work at computers and on phones. Erik immediately formed a friendship with a resident dog, and as he gently touched this animal's fur, there was no tension visible in his body at all. No stiffness. No rocking back and forth. I smiled as I heard Erik say, "HI!" One of the many things I adore about Erik is the way he approaches animals and greets them like he would any fellow human as if he is the host of a talk show. His charisma, sadly, is completely lost on animals, but it makes me giggle every time. We were invited to watch Erik prepare to ride. He was fitted with a belt-like device around his torso and a small, white bicycle helmet, which he was less than thrilled about wearing but soon forgot about with some well-timed distraction. He mounted the horse from a metal platform and a tiny set of steps. After snapping some photos, Shaena and I turned to make our way back to the observation room, and it was at that moment I realized how much trust I have in Erik's "team." After days of worry and wondering how Erik would respond to the strange sights, sounds, and smells of this new place, it was easy to let all of it go and allow them to take over caring for Erik. Once we took our places on the love seat in the observation room, Shaena and I watched the staff work with Erik as he practiced throwing balls into trash cans from atop the horse and felt the large animal's movements beneath him. His normally stiff little body was relaxed and moved fluidly with the rhythm of the horse's movements from the very first second he was placed on it. Every time the team rounded the arena and passed the window, we would clap and wave at Erik as if we were at a very poorly-attended rodeo. He shot happy smiles right back at us.

After approximately 30 minutes of riding, Erik's legs were manually stretched out, and he was taken into the modular trailer for more therapy. When we went to check on him, Ms. G was playing an obnoxious, musical toy, singing along loudly, and holding Erik. Much to my surprise, he was doing fine, although it was painfully obvious to me he would much rather be playing with a quiet wheel. Ms. G is the first therapist I have observed working on Erik's issues with noise. While I think many loud noises are painful to him, there may be some that may simply create anxiety. I'm skeptical, but I have an open mind about gently exposing him to more noise -- just as long as it doesn't seem to hurt him physically or upset him beyond the point of consoling.

The three of us made our way back outside to the Jeep at the end of Erik's session and ended up taking a quick tour through the Taco Bell drive-through in town. I still can't tell you exactly why therapy in the morning makes me want a bean burrito, but it does.

Ah, the healing properties of fire sauce.

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Thursday, February 08, 2007

Being Human

Oh, I’ve seen children with Williams syndrome. They don’t count. They’re not even human. They must belong to some other species entirely.

-- Unidentified language researcher at a conference on language and evolution

Ironically, I think it's human nature to dehumanize and demote people in our own minds when we feel threatened by them or lack understandstanding of them. It's extremely comforting to separate ourselves from people who are different because we don't have to face seeing ourselves in them. Different can be scary. I am guilty of letting fear keep me from seeing the people around me as clearly as I should have in the past.

People have been persecuted and dehumanized for centuries for their gender, their religion, their sexual orientation, the color of their skin, their disabilities, or even having a devastating disease. Sadly, the world does not seem to have drastically changed from the days of witch hunts and the Holocaust. We are still living in the Dark Ages in many ways in a world of hate crimes, "ethnic cleansing," and genocide. Children are taught that it's okay to bully other children by their own parents. And that seed is so easily planted when nothing is said and that behavior is silently tolerated.

The more I read about Williams syndrome and autism, the more I realize how young these diagnoses are and how little is really known about the brain. I was horrified to discover that many brilliant people making great strides in scientific research seem to lack a basic sense of compassion for their subjects of study because they consider them just that -- subjects. One researcher placed autistic children in the same group as "robots and chimpanzees," stripping away the human component entirely. Maybe they are afraid to reveal how much of these disorders is a mystery to themselves and reveal themselves as human. Maybe a sense of detachment is one of the ingredients of being a great researcher. I know that the geneticist that confirmed my fears that rainy March day last year lacked anything remotely resembling compassion. I had no doubt the man was brilliant, but he obviously had his nose in a book the majority of his life. These days I find comfort in reading about researchers like Ursula Bellugi, who seem to be able to maintain a human connection with their subjects of study and treat them with dignity and respect.

Maybe it's just hard for me to admit my precious child is one plane ticket away from being the subject of a study at all.

To me, having no compassion is not human.


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Tuesday, February 06, 2007


I heard this song Tuesday during one of my not-so-proud moments while I was bawling over my steering wheel in a local parking lot this afternoon. It felt like an answer to a prayer just as I felt like giving up.

I have been having a difficult week so far. For one thing, my second Gateway computer hard drive kicked the bucket, and I have been unable to work for two days now. When Erik and I went into the computer store with the Windows CD I was instructed to provide, the electronic buzzer to alert staff that customers were coming through the door made Erik howl loudly in pain just as I began trying to decipher what the salesman was trying to tell me about not being able to load what I brought because I didn't have the correct documentation for copyright purposes. It was pretty much the straw that broke the camel's back. Everybody in the store was staring at us as I frantically tried to explain what was causing my little boy to cry and dug through my things for what he wanted and I knew I didn't have while I half-assedly patted Erik on the head to try to soothe him. Erik didn't even stop to take a breath and kept screaming as people kept entering and leaving the store. When this man sheepishly asked me if I was having a bad day, I almost burst into tears right then. He apologized and managed to get me out of the store as quickly as possible, but I felt once again like we were a freak show, horribly out of place in the world. As I left, I could hear myself muttering quick explanations about Erik's sensitive hearing to the other female customers making comments to me as I passed.

I have people in my life who take care of me and love me, and I am thankful for that, especially on days like today. When I am not strong, there are hands to hold me up.

Because of one of the more intimidating-looking, computer-savvy people who loves me and takes care of me, my new hard drive will be up and running soon. In addition, the computer store offered another apology and informed us I can call in advance before I come in next time. They will gladly disconnect the buzzer from the door before I get there. Now that's what I call royal treatment!

This is to all of you who support me and love me -- and to those of you who don't feel strong this week. There will be tears in a parking lot at some point. Just don't forget to turn on the stereo and listen to the music!

Rascal Flatts - Stand Lyrics

You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless
Like you've lost your fight
But you'll be alright


Cause when push comes to shove
You taste what you're made of
You might bend, till you break
Cause it's all you can take
On your knees you look up
Decide you've had enough
You get mad you get strong
Wipe your hands shake it off

Then you stand, Then you stand

Life's like a novel
With the end ripped out
The edge of a canyon
With only one way down
Take what you're given before its gone
Start holding on, keep holding on

[Repeat Chorus]

Everytime you get up
And get back in the race
One more small piece of you
Starts to fall into place

[Repeat Chorus]

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The Dentist

I imagine that going to the dentist for the first time with your child is a challenge for anyone. When your kid has WS, however, it puts a different spin on things. You are frightened of hearing what the dentist has to say about your child's teeth. You don't know if he will mention words like microdontia, enamel hypoplasia, or hypodontia. There are frightening photographs on line of anonymous children with teeth that look monstrously abnormal. Not only are you afraid of what the dentist will see, you are afraid your kid's permanent teeth might simply not exist beneath the surface. Not only do the medical issues bring great anxiety, there is also the fact that you are exposing your child to a new environment filled with crying children, an obscene amount of overstimulation, and shrill noises you would normally avoid at all costs in the Williams world.

Brian met me at Erik's school, and we left Erik's class early this morning. I found myself in a horribly surly mood in parent group, anyway, and the less I said, the better. I was feeling anxious and angry. When we arrived at the dental office, we sat in a small waiting room that was obviously once intended to be an exam room filled with magnetic sketch boards, stuffed animals, books, and tiny padded chairs in primary colors. Everything looked impossibly clean to me. Erik had long ago lost the will to focus on anything for more than five seconds at at time by now. He was squirmy and agitated from his lack of nap. The two dental assistants helped with paperwork and led us to an examination area where oldies music blared and another army of stuffed creatures and glassy-eyed dolls lined the walls. Dr. Mike soon made his appearance.

I find it necessary at this point to identify two things that bug the dickens out of me:

(1) People who call themselves "Doctor" followed by their first name. I find this exceptionally pervy, even in a pediatric setting.

(2) The fact that any given dental office can't seem to effectively function without "Hang on Sloopy" blaring at full volume.

Okay, I'm done venting now.

I expected "Dr. Mike" to be 12, maybe 13 years old by the sound of his name. My first thoughts when I saw him: Ah, crap, he's old. What if I like him? Is one more person in my life going to leave me hanging and let me down? I reassured myself I would detest the man, who would know nothing about WS and talk to Brian about golf instead. He was a strikingly handsome man in professional attire, including an actual tie, and an unnaturally white, straight set of choppers. Silver fox, indeed. But I digress. He talked to us about five prior WS patients of his, and Brian and I bit our tongues trying not to bombard him with questions about where they lived, how old they were, etc. We hear about people with WS as if they were mythical, like unicorns. We have yet to see one who lives here. We talked about acid reflux and its devastating effect on enamel. Dr. Mike explained there was no guarantee Erik's permanent teeth exist under the surface but that at least the front teeth likely would come in when his baby teeth fell out. He said that x-rays to find out which teeth were going to come in would not be of much use, as they wouldn't create teeth that weren't there. Time would tell. He said that there have been great advances in porcelain veneers and that most cosmetic issues were fairly easily rectified.

He had Erik lie back on Brian's lap, and he showed Erik on a doll how he would examine his teeth, which seemed utterly ridiculous until Erik seemed to be watching and said, "Teeth." Erik whined and cried a bit as Dr. Mike pried his mouth open with gloved fingers and looked inside on two separate occasions with a breather for Erik in between.

At the end of the exam, he said he was "thrilled" about Erik's teeth. They were in great alignment and were not decayed. Erik will likely need braces as a teen, but he explained his WS patients in the past had been eager to achieve a perfect smile. We will have to go to the dentist every four months for now to coat Erik's teeth with a special fluoride lacquer of sorts to fill in weak spots and protect them from damage. He gave us a printout of the WSF website page on dental anomalies and went through each of them with me, explaining that Erik looked extraordinarily better than the examples provided.

Erik was given a small, stuffed baseball, an orange balloon, and a photo of himself enthusiastically labeled "Erik's First Dental Appointment!" by the assistant. We were given terrycloth finger cots to clean Erik's gums, some plastic mirrors to examine his mouth, and a Blue's Clues toothbrush. He said that Brian and I were doing everything just right, and I shook his hand at least three times, although I felt like grabbing him and kissing him directly on the mouth. With tongue.

Most of my fears had evaporated by the time we made it to the parking lot.

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Monday, February 05, 2007

Superbowl Sunday XLI

We had a fabulous time Sunday at my friend Nadine's Superbowl party. Years ago, Nadine had the honor of sitting next to me at our old job at the clinic. Although we didn't work together terribly long, we have been friends for years now and have created some hilarious memories that will never fade. I have never been one to believe in silly things like auras around people, but when Nadine walked into a restarant to meet me once, I saw she had a full-body halo, plain as day. The girl simply glows, and she is a sure-fire cure for any blues I may have. She also puts on quite the party with enough food to feed an army and plenty to wet one's whistle. I brought my new margarita maker for this occasion, and Nadine and I sat out in the gorgeous sunshine watching it grind out our drinks. I missed much of the first half of the game just because it was too gorgeous to sit inside.

Erik is quite comfortable in Nadine's home, as she doesn't live far and we have gone there since he was small. I packed a few toys for him, but he seemed most fascinated with the people attending the party. The only thing he didn't enjoy was the rowdy yelling that began when the game began to wrap up. He promptly brust into tears where he was playing on the kitchen floor. Roy, Nadine's husband, built a wonderful, hot fire in the little Mexican fireplace on the back porch, and Brian took Erik outside to sit by it when the crowd was too loud. By this time, I stripped off Erik's braces, shoes, and socks, but his feet stayed toasty while they sat under the stars.

I fell victim to peer pressure and rooted for the Colts (I have a bit of a crush on the Manning boys, anyway, and was happy to see Peyton win his shiny, red Cadillac for being MVP). I especially enjoyed the halftime show featuring Prince in his embroidered powder blue bell bottoms and platform heels in the pouring rain. What a triumph! When I asked another girl attending the party if she liked Prince, she said, "My mom sure loves him!" Oh gee. Am I old or what?

Thursday, February 01, 2007

Tubby Wa Wa

Erik's pool therapy began this week. I packed my old high school duffel bag with a towel, swim diaper, soap, washcloth, and granola bar, and we headed to the PT facility. There was a athletic-looking man with silver hair dressed in expensive exercise attire in the waiting room. He stared at the two of us and smiled as I struggled to juggle Erik and everything I was carrying. Just as my bottom hit the chair, a therapist came and called his name. He closed his magazine, stood up, and began walking out of the room, but his trunk rotated progressively in order to keep his stare fixed on Erik. His arm reached out towards him as if he was going to say something, but he seemed to change his mind as he began to round the corner. He finally turned to follow his PT, and I caught an almost confused but definitely pleasant smile still fixed on his face. I smiled myself. Erik seems to touch everyone in a way I can't understand. This man seemed to be caught off guard.

Ms. G met us in the waiting room wearing a black swimming suit, wrapped in a fluffy towel that looked fresh from a dryer. We followed her bobbing ponytail down the hall into a small area designated for changing clothes. We picked one of the two sides of this tiny space that contained a shower stall and a folding metal chair. I pulled off Erik's clothes and dressed him in the ridiculous Lion King swim diaper I had purchased at Safeway the day before. I was told I could choose to run errands and leave Erik there, sit in the waiting room, or sit in another metal folding chair on the side of the pool. I opted for the poolside seat, at least this time. The pool was between 4 and 6 feet deep, depending on where you were standing in it. In the deeper half, a woman with bobbed white hair and a tattoo of a gecko on her shoulder followed the instructions of her therapist standing on the side of the pool next to me. Ms. G and Erik descended the small set of stairs into the very warm water. Erik seemed immediately relaxed. The stiffness in his muscles melted away, and his legs kicked gently in the water behind him as she held him. As they played with the impressive selection of ping-pong balls, milk jugs, plastic boats, and party beads, I scanned the room. There were plastic fish schooling in a shower of colorful glass raindrops hung from the ceiling in one corner. There was the usual mysterious assortment of life rings and hooks designed for plucking people in distress from the water like fritters from a deep fat fryer. There was a giant metal hanger on a pivoting mechanism I guessed was for transferring patients unable to move on their own. The heat of the room soaked into all of my pores, and my hairspray threatened to fail. I closed my eyes and imagined I was on a beach. After a brief vision of me losing consciousness in the relaxing steam and pitching forward into the pool like a scene from Weekend at Bernie's, I decided to keep my eyes open. Erik's limbs were moving more fluidly now. Ms. G stretched him and trailed his legs behind him as she moved. I felt something well in my heart as I watched my son's legs work gracefully. He looked completely normal to me for once. I bit my lip and went back to my daydreaming. The other client in the room crossed our half to exit the pool, and on her way she looked up at me and said, "I just have to say that your boy is so cute! He is just so friendly!" Again, I had missed any sort of interaction between Erik and this stranger. He had claimed another victim. I smiled again in wonder at this phenonenon as the door closed behind her. The session continued. Before I knew it, an hour had passed, and Erik was being slowly walked up the steps. When he reached the top, I caught him in the hooded towel I brought and walked him back out, where I sat him on the slats of a fold-down wooden bench and rinsed the chlorine off in his very first shower. I dressed him and managed to stay 90% dry. On the way out the door, I was asked to make a payment and sign forms while I attempted to keep Erik from plunging his hand into the water feature (too late), running back down the hall, or dumping over the wheelchair in the foyer to spin the wheels. I was back to being edgy, but I left knowing his session seemed to be relaxing for him and would help keep his joints and muscles loose.

Hippotherapy begins Friday the 9th.

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