Erik Quinn: The Heart of a Family: March 2008

Saturday, March 29, 2008


Today she pulled herself out of bed
to wrestle the demons she knows by name,
all while calmly stirring her tea.
She smiles to herself because
she hardly breaks a sweat anymore.

Your lips moved, but your words were soon lost to her.

Her face appears the same as it ever did,
but you are obviously unfamiliar with her war
and misunderstood the way she bled buckets in front of you
while her tears dried and the world went on.

Her struggles seem to be mere vapors to you.
A faint stripe of something unpleasant in the air
easily whisked away by fresh, breezy prayers
and a final spritz of denial.

A child’s giggles fill the room,
his voice so gorgeous and light that it floats.
She smiles as she pushes another foe's carcass
across the floor with her toes
so there is no need for you to stumble.
It leaves a dark smear only her eyes can see.

She is capable now of fighting while
she walks behind a shopping cart,
stands guard at a playground,
stirs a pot,
changes a diaper,
squints at a computer screen,
and even laughs loudly at jokes.

Just like any woman would.

She smiles now.

But the invisible, seething war rages on for her
without the luxury of rest in the cool shade of denial.
She must go into battle every single day.

Whether you ever really see it or not.


Friday, March 28, 2008


Sometimes I get the impression that people think I am making this entire WS thing up.

All of it.

These days I focus on the positive while being fully aware of WS, and perhaps that is confusing to others. Perhaps that makes Erik's disability disappear to them. Unfortunately, perhaps the hard work we have done to help Erik achieve each milestone and Erik's daily struggles also disappear in their eyes. I dread the day reality hits and they see Erik's WS for the very first time when they ask him to solve a simple math problem or tie his shoe months or years after his friends can accomplish the same tasks. They are likely in for a very rude awakening.

I have to thank them, though. It's nice to finally realize this is all in my head.

Now I can cease cramming his feet and legs into tight plastic casing on a daily basis, taking him to that ridiculous therapy of his, and having his blood vessels monitored regularly. I will sleep soundly, knowing his lifespan will be a full one without any worry whatsoever. That he will be able to live on his own without any assistance whatsoever just like any other adult. That he will be "average" and "normal."

I will begin forcing him to play with other children on equipment that seems four stories high to him, even if he is covering his ears because of the noise, crying in agony, and falling down onto his bottom because he can't see where the edge of what he is standing on is. I will now force him to fit in with every other kid. Yeah, they're right. He's completely "normal" and "average." I was simply unable to see it before. It's nice to have somebody take an occasional glance into my life and point out the obvious. Dur! Talk about mentally challenged!

To think I was feeling alienated and alone for nothing! That I screamed at the world for support and sometimes got silence in return! Now I know that a pat on the shoulder and "You're in my prayers" when I asked for help were all I needed after all! What a freaking waste of time!

It's time he toughened up and lived a completely normal life, for sure.


The following was recently posted on a message board by a father of a girl with WS. I think it provides a lot of insight into our own family.

Let's not beat around the bush: Williams syndrome *IS* a genetic *disorder*. Period. It causes lots of bad lifelong medical, physical and cognitive things. Period. It is a disability. Period. The word *disorder* means something is *wrong*. Causing lots of bad medical, physical and cognitive things means something is wrong. Having a *disability* means something is wrong.

There is no debate here. Semantics and emotion don't change the facts.

Let's be clear: We're not talking about our children's disposition, or character, or spirit, or love of life, or gentleness, or empathy, or humanity. There should also be no debate here that in these areas they are far greater humans than the rest of us who do not have Williams.


Would I give anything to stop Erin from having surgeries and lifelong medical problems, to not know an endless parade of doctors on a first name basis, to not have her be on Concerta every day of her life without her behavior being out of control, to not subject her to endless testing and retesting that is so difficult for her, to not spend tens of thousands of dollars on attorneys and countless months/years fighting school systems to get basic education, to not need to have national conventions to learn how to deal with the system in order to allow her to live a somewhat normal life, to not have to worry and plan for the fact she may never live independently, to remove the probability that she may never get married have a family or children, to not have to worry about (and plan for) who will take care of her when we're gone and the burden we may have to place on our other children, to not watch her struggle with so much in her life that is not a struggle for anyone else, to have her able to run and catch a ball, to not watch as she despairs and withdraws because no one wants to play with her or be her friend.

Would I give anything for that? You're damn right I would - in a heartbeat.

If you're reading this thinking this means we would love Erin more if she didn't have WS then you're completely missing the point. We couldn't love Erin any more than we do - she is one of the three joys in our lives (the other two being her brothers).

But this isn't about us, or you, or the world. It's about our children and their lives. It's about Erin and Erin's life. And would Erin's life be better without WS - It absolutely would. And I would challenge anyone who would suggest otherwise as being selfish and not having Erin's best interests at heart.

If this bluntness has offended anyone, well... then it has. Denying that WS is a disability (which means something is wrong) does not provide benefit to anyone, least of all our children.

The bottom line is that none of this matters. We can't take WS away, so speculating about whether we "would" or not is a pointless emotional discussion. What is important is what we do to ensure that our children with WS have the best lives and the most opportunities they possibly can. If we stay focused on that, and do it to the best of our abilities, then we have fulfilled the responsibility we have all been given.


Thursday, March 27, 2008


Erik went to Chuck E. Cheese for the first time (and loved it). He went shopping in Boise. He hugged a complete stranger at Old Navy. He charmed Dawnita's friend. He greeted a bus full of senior citizens on a shopping excursion. He showed his uncle that he can run like the wind. He ate green beans. He ate his first McDonald's chicken nuggets. He played with his cousins. He sat on the toilet. He made everybody kiss Stinky Dog. He made people laugh. He learned to pretend he was asleep when someone checked on him.

When I talked to him on the phone yesterday, he sounded different. He asked me a question for the first time over the telephone instead of simply rambling on about construction equipment and fire trucks. He said, "Go see Boppa and Gua, okay?" My heart skipped a beat. I told him we would see my parents soon and that I loved him. He said he loved me, too.

As for me, I drank margaritas this week. I had people wait on me in restaurants. I went bowling. I spent time with Brian. I painted my nails bright pink. I didn't clean the house. I spent time writing. I took a nap. I went shopping. I played video games. I spent hours on the phone. I watched a trashy movie. I made a beaded bracelet. I did the advanced aerobics DVD collecting dust in my closet. I took a bath. I lit many candles. I cooked spicy food. I shared a bottle of champagne. I served a candlelight dinner. I ate a meal at the table in the formal dining room.

It was a wonderful week, but today I'm doing the happy dance. Erik is coming home!

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Tuesday, March 25, 2008

Status Report

Thank you, boys! It's been great!

-- Erik (to his cousins as he was being carried to bed)

The reports from Idaho have been reassuring regarding Erik's spring break with his aunt, uncle, and cousins. He is definitely in good hands. Sending him away for a few days was a difficult decision to make, but it was obviously a good one for all involved. He is a crack up, and it makes me happy we can share him with our family.

The following video was taken by my father on one of their walks. Their usual route is approximately two miles, and Erik is now able to run all of it. Watching this makes me realize how important physical therapy has been in Erik's development and how able Erik is to adapt to the challenges of gigantic deficiencies in his visuospatial ability. He is truly an amazing little boy.

His reaction at seeing the camera is pretty priceless. He is also a serious ham.

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Monday, March 24, 2008

Absence Makes the Heart Grow

Erik is in a different state today. We loaded up the car yesterday morning for an Easter road trip. Brian's brother and his family simultaneously drove towards us from their home in Idaho to meet us in a small farming community hours across the desert. The drive was quiet and uneventful except for a large chicken crossing the highway as we left town, which Brian avoided turning into roadkill. Erik enjoyed the collection of snacks I packed and movies on his portable DVD player. He glanced up to admire tractors and cows as we passed, but there wasn't a lot to look at. He soon tired of traveling and asked to go outside. I shed my tennis shoes in order to go back and forth between my seat and the back of the vehicle to join Erik, a feat that is much easier for me this year after getting in shape. I held Erik in my arms on the drive and attempted to snort every last molecule of the scent of his hair I could before we had to say goodbye for a portion of spring break.

We finally arrived in a small community with more dealerships for tractors than for cars and saw Brad's gigantic, gleaming Ford truck parked in front of a greasy spoon with a large, yellow sign announcing the place served home cooking. Amazingly, the establishment was open on a holiday afternoon. My sister-in-law looked up from where she sat in the truck, and her face lit up as she spotted me. We grinned and exchanged our usual dorky waves.

Once we were parked, we greeted Brad, Dawnita, and our two rapidly growing nephews and made our way into the restaurant, where we were welcomed by a slim waitress attempting to fill out a pair of Wranglers and a crisp, striped button-down shirt. She was pleasant, but it was quite apparent she ate very little from the menu and seemed less than enthusiastic about food in general. Dawnita and I made our way to the pitiful little salad bar, where I said a prayer requesting that I not contract salmonella and dished up a plate of vegetables drenched in wine vinegar. Why they insist on putting the pale, miniature corn cobs that taste like dirt on every salad bar in America is beyond me. I ended up enjoying my meal and watched Erik eat crispy french fries and half of a buttery toasted sandwich oozing bright orange cheese. Amazingly, he also drank most of a giant glass of cold milk. A handful of locals dressed in their Sunday best silently smiled at our nephrews' antics. Erik smiled, too.

Our pleasant lunch was soon over, and we headed out to our vehicles. I changed Erik's diaper one last time in the back seat and tugged his suitcase out of the back of our Jeep so it could be be loaded into the back of the big truck. Brad and Dawnita buckled Erik in a car seat between his two cousins in the back of the crew cab. He smiled at me, unsure of what was going on, and we said goodbye.

Brian and I then started our car and headed back the way we came across the desert. The emptiness of Erik's seat in the back was painfully palpable to me, but I knew I would feel better as soon as we got home and stopped traveling. I chased a chalky anti-anxiety tablet I keep for road trips with a swallow of cold and gritty leftover coffee and turned on the stereo. Brian spotted a simple brown sign showing the outline of a glass of water and pulled over. There was a natural spring by the side of the highway in the middle of nowhere. It was a place we had wanted to stop before but had not chosen to do so with a small, impatient boy in the car. A pair of thin metal pipes jutted out of the rock cliff and came down to our level. Cool water spurted out of the end of another pipe set in a small, crude pedestal made of lava rock held together with old concrete. Graffiti in a kaleidoscope of colors, some of it relatively ancient, was sprayed over the rocks that surrounded us. There were neon-colored markings left by best friends, lovers, and graduating teenagers from years past. I finally dared to bend down and take a drink from the water that magically spurted out of the desert rock. It tasted wonderfully sweet on my tongue. Fuzzy childhood memories flooded back to me, sparked by the taste. We walked back to our vehicle and continued our drive. Soon we reached the only town with any significance whatsoever on the trip. Brian took a right at one of the only stoplights there and headed up a deserted street, past a small grocery store to a building shaped like a giant, taupe-colored circus tent. An impressive tangle of poorly hidden, chunky duct work on the side of the building hinted at how hot the place became inside during the summer. He identified the place as the casino he and his friends went to on their way fishing in the mountains last year. There were signs indicating where we should park if the place was full, but we found a spot in front in a nearly deserted gravel lot. I put on a coat of lipstick, and we made our way to the building.

Even though Brian told me about visiting this casino before, I could never quite picture the place in my mind. Now I know I will never forget it. We entered through wood and glass double doors that shut with a loud bang. I kept my PTSD in check and managed to not hit the floor. It was very dark inside with little decoration compared to the gorgeous Native American casinos consisting of the beautiful timber, glass, and neon I was familiar with. It seemed that the very smell of the decomposing tent was instantly offensive, as if someone had stepped in something foul and had only managed to scrape a portion of it off. A friendly security guard at a front desk greeted us, and we made our way to the center of the giant structure. We saw rows and rows of dying slot machines. The ones that did not have an "out of order" sign on them looked as if they had electronic cataracts over them, making it difficult to see the display. I found a vacant seat at one, which wasn't very difficult, and put $20 in. I pushed the "spin reels" button. A feeble gurgle of chimes announced I had won $2.50, and I cashed out, feeling creeped out. A very attractive young man offered to bring me coffee or soda and called me "ma'am." I smiled back, amused at the formality in this setting, and declined. By now, the smell was beginning to get to me. Through a set of metal doors, I could see that it looked as if the bingo room had been cleared of all of its former furniture, and it was almost completely dark inside. I spotted Brian, who had made his way over to a bank of brand new machines with fancy double displays. He was drinking a Styrofoam cup of Sierra Mist over ice. I sat down next to him, and we spent the next hour or so giggling and gambling. We lost everything we fed into our machines, but we had a great time. We got up and walked out holding hands. The dimly-lit lunch counter in another part of the tent emitted the very faint, welcoming smell of something fried, but it quickly lost the battle against the general odor of the building and was lost. Brian offered to buy me something to eat, but I declined, even though my stomach was growling like an angry bear. As we made our way to the exit, I glanced into a video arcade, apparently for children, and saw it was empty. Half of the games inside were unplugged with signs crudely taped on them. The bored-looking security guard thanked us for coming in, and we found ourselves back in the parking lot, which was lit by the setting sun. I felt as if I stepped out of a Stephen King novel and realized the scent of the place had sunk into every one of my pores. We hit the Subway sandwich shop on the way out of town, where Brian purchased a foot-long Veggie Delite with honey mustard for me, and I scarfed it down as if I had not eaten in days.

On the last leg of our drive home, the remnants of snowbanks sagged in the spring temperatures, and we occasionally pointed out the white rumps of antelope herds. I spotted the glowing eyes of a deer glancing at our car as we whizzed past. It was making its way down an ancient, jagged lava flow, trying to disappear into the sagebrush. I watched a portion of a movie on the tiny screen of my iPod as Brian drove, cursing myself for forgetting to bring my Will and Grace box set to watch on Erik's DVD player to keep my mind off of how much I missed my boy.

Now that we are home, we are free to do as we please, but my heartstrings are pulled tight. The initial reports we have received indicate that Erik is doing just fine, although he had a bit of a crying spell early this morning. He has asked for us both, something that is still fairly new. We will spend a few days apart for the second time since he was born. I remember the days when he didn't notice my presence or absence at all and how it broke my heart into a billion pieces.

My, how times have changed.

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Saturday, March 22, 2008


Random Thought of the Day: I saw a woman driving a sparkly pink dump truck this week. I so want one.

I ordered two boxes of glistening plastic tiaras in various colors from a party supply store for Sophie's Run this year. Some are even trimmed with pastel-colored fur. I figure people regularly run marathons in sequined dresses, so why not? Erik's Auntie Dee-Ta and I would don tiaras on any given day, anyway, (if you someone dragging a trash can to the curb wearing a bathrobe, fuzzy slippers, and a crown, it's me). However, we thought they would be fun to wear atop our heads in honor of Sophie's birthday. It feels slightly strange feeling so goofy this year, but, quite honestly, I felt it coming on at last year's 5K. I must admit that I suspect that the combination of aging and Erik's diagnosis has made me much goofier than I ever was before. I daresay I am nearing the pathologically goofy category. With everything that is going on in my life right now, I simply have no time for meanness, long lines, feeling insecure, or taking crap from people who think they know everything anymore. I just don't feel like letting the little stuff break my mending heart wide open all over again. I have worked too hard to feel this good, and life is too short.

I elect instead to spend the energy doing something else.

Anything else.

I'll be doing it wearing a jeweled headpiece, of course.

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Thursday, March 20, 2008


One of the closest, most important people in my life was diagnosed with a devastating, progressive disease this week. I was told yesterday morning in my living room as I stared out the windows and watched it begin to snow. I knew that tears would only make matters worse, but I was unable to keep them from spilling as I learned that our time with each other is likely cruelly limited. My heart is absolutely aching.

While I know I now have the strength to prepare for whatever comes in the near future, I'm not sure how I will go about it. I only hope I can provide as much support as I have received from my friend over the past two years. I wandered around the house yesterday feeling lost, unable to remember exactly what I was doing in each room.

Words seem lost to me, and I am taking a few days off until they come back to me again.

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Tuesday, March 18, 2008


Today I dropped Erik off at school. I find the whole process gets easier each week. However, he is still so distracted around the other children and their noise that he doesn't seem to hear simple instructions. Today I thought the teacher and I were going to go hoarse asking him to hang up his jacket and backpack in his locker. He can unzip his coat halfway with a zipper pull and then shrug it off after some assistance, and I help him hang it on a little hook. He still seems completely unable to really see the connection between the hook and his coat. Perhaps he thinks the whole thing is pointless. Who knows. I just believe that he still doesn't really see things like other kids do. I left him with a teacher and headed to the nearby salon for a haircut.

I have been going to the same hairdresser since I was a teenager. During this time, she has worked in three salons, and I have followed her. We both went through the big hair phase together, and I came home from college periodically to have my hair permed into a glorious mane held in place by half a bottle of Aqua Net hairspray. Over the years she has listened to my stories of high school graduation, college, dropping out of college, going back to college, buying my first houses, marrying, having a baby, and dealing with Erik's diagnosis. She doesn't miss anything going on in my life, as she also cuts the hair of my best friend and my business partner. I feel strange when she asks me what I'm up to, because most of it now is related to my child. I often find myself answering questions about WS. While I would absolutely love to talk about something else for a change, I'm really excited about Erik and end up yammering for an hour about him. The salon experience isn't as relaxing as it used to be, but I still inevitably make her laugh until she snorts, and she always hugs me tightly on the way out. Today she told me I looked great (SKINNY, even!) and that it seemed to her that I have "figured everything out." Wow. I'm not sure about everything, but I suppose I have achieved a pretty good balance between my life as a mother and just being ME these days. That's a pretty big compliment. I walked out with a sassy new hairstyle and a giant smile on my face.

The school bus came to a stop in my driveway a little while after I made it home, and I climbed the chunky steps until I could see over the high backs of the chairs. Erik was strapped in, smiling and talking to himself. When Jeff, the bus driver, unlatched him, Erik headed to the back of the bus, almost rock-steady in his new orthotics, enjoying having the space all to himself, running his fingers over the floor to feel its grooves. Jeff asked if I was in a hurry, and I told him I wasn't. He instructed me to hang onto Erik and made his way down the steps outside to the wheelchair lift in the back of the bus. He opened the door and demonstrated how the metal platform, which seemed to have the consistency of a cheese grater, went from the bus to the ground. The mechanism was surprisingly quiet. After Erik struggled a bit with his anxiety, he let me hold him, and we crawled out onto the platform. I kneeled on the razor-sharp grate with Erik on my lap, and Jeff activated the machinery. We rode up and down at least twice as the wind and rain began whipping around us. We finally stepped off the bus and said our goodbyes. We waved and watched Jeff drive away.

Erik will be going to his aunt and uncle's house in Idaho for a portion of spring break starting next week. This is a big step for us all, but Brian and I decided that it would be good for all of us. It will be my second time away from Erik for a few days. We will meet Brian's brother halfway in the middle of BFE and make the drop. There is so little between our houses in our two respective states that the first time we made the drive, Erik looked across the dusty desert hills and said, "Ocean!"

I have always been big on the concept of "Team Erik." Erik has a team of friends and family that will be there for him no matter what, and his aunts, uncles, and cousins are a big part of that team. The bigger the team, the more relaxed I am, and I consider myself very lucky to be able to place my trust in such a dear group of friends and family that love Erik as if he were their own son.

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Friday, March 14, 2008

Shoes and Socks

Let it go
Let it roll right off your shoulder
Don’t you know
The hardest part is over
Let it in
Let your clarity define you
In the end
We will only just remember how it feels

-- Rob Thomas "Little Wonders"

I went to Payless Shoe Source yesterday and explained my orthotic-related plight to the salesperson there. She nodded at me and went on to explain that they used to make shoes parents like me bought that accommodated the bulk of orthotics beautifully, but they were no longer available. After trying several pairs (I couldn't help but notice the boys' section paled in comparison to the gigantic display of princess-pink shoes for girls), we found one last pair of Air Walks, the shoes she had referred to. They were white with awful, goose poop-colored camouflage strips across the midfoot and two sizes to big for him in order to accommodate the hardware I would place inside. Camouflage on a 3-year-old. How appropriate. Would this little detail make his orthotics invisible? My high school marching band shoes were delightfully dainty compared to these. Six dollars. I accepted the shoes and drowned my disgust in purchasing a pair of black and tan slingback heels with bows on the toes for myself.

From there, I went next door to the sporting goods store. It wasn't open, so I sat in my Jeep and watched an employee come out with a push broom, running the bristles over the sidewalk and pretending a girl sitting in her vehicle staring at him was the most comfortable thing in the world. When the doors were unlocked, I gathered my plastic bag containing Erik's braces and hunted down another employee to assist me in locating children's soccer and baseball socks, the only socks that seem to have the length to protect Erik's skin from the plastic on his legs. I would have tried them before, but apparently infants don't normally suit up in team uniforms (like I would know). They were not previously available in Erik's size. I ended up with two pairs of all-purpose athletic socks in white.

As it turns out, the socks look a lot like thigh-high stockings on Erik, but they seem to stay up. He wore his new orthotics for an hour yesterday. I crammed his feet into the new pair of giant shoes, trying not to curse under my breath, fastened them as best I could, and set him in a standing position on the ground.

I began to laugh.

He just stood there with his legs slightly bent, looking up at me as if he was afraid he was going to float away. I reassured him that he would get used to them eventually. He tentatively put one foot in front of the other and made it across the living room two inches at a time. I couldn't help but think of the time I put a sweater on my cat and watched her try to walk in it. Erik stooped to pick up a toy successfully and seemed to be as comfortable as anyone would be with sections of stovepipe around the legs.

Mission accomplished.

I was alone for most of the day yesterday. After dropping Erik off at school, I found myself with a sloshing bottle of Windex in one hand and a rag in the other. When I'm emotional, I clean. If you see me spritzing things with Windex, it's a positive sign. It's levels below angry vacuuming in terms of emotional distress. My roommate in college knew to stay miles out of my way when I was using a vacuum cleaner.

I was yanking food from the glass shelves of our refrigerator to make way for my mad cleaning spree when a Rob Thomas song came on the radio. I have heard this song a thousand times, but I never really listened to the words before. On Diagnosis Day, however, the words sunk right into my heart, and I smiled. I realize there is meaning in all of this, and sometimes I can catch a glimpse of it before it all fades into a big, dark mystery again. Once in a while, I can hear whispers that seem to be meant for me and me alone. Maybe I am going nuts.

You are doing the best you can. What you are doing is important.

Now that's what I call progress.

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Thursday, March 13, 2008

Two Years

Two years ago today my life without Williams syndrome took one last dying gasp and faded into my personal history. Time of death: 2:15 p.m. I was absolutely devastated, and the tears began to fall. I continued to cry for nearly an entire year. This past year was much easier than the first, and I am thankful for that.
It's funny. I can't really remember exactly how life felt before that rainy afternoon in a stuffy examination room at the children's hospital.
WS makes its presence known to me daily, whether I want it to or not. Because of it, we struggle in so many different ways, but I notice I smile through a lot of it now, even when things are extremely unpleasant or difficult. Either I can handle it, or I'm going completely crazy. Either one is okay with me. For example, I noticed yesterday the way I loudly announced each and every time I blew my nose or flipped on a noisy appliance, whether Erik was visible in the room or not. This habit apparently developed unnoticed over the last few months. I previously avoided making much noise around Erik at all, but now that he is adjusting to how noisy life can be, I simply give him a courtesy warning, as if I am yelling "fore" before chopping at a golf ball with a long iron. This practice may seem bizarre to others, especially if Erik isn't even home, but I seem to have forgotten to care anymore. I do believe that's what we call progress.
If you visit our home, you may hear me yell --
"I'm going to blow my nose now!"
"I'm brushing my teeth now!"
"I'm turning on the garbage disposal now!"
"I'm chopping walnuts with the food processor now!"
If Erik is near, he will react by turning my direction, dropping what he has in his hands, and immediately covering ears with his palms.
I just don't think about how I felt before D-Day much anymore.
There's no point.
Because life should and does go on, even if we clamp our hands tightly over our ears.

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Wednesday, March 12, 2008

Amazing Brace

Erik and I went to the orthopedic center for an appointment with Jeff, the orthotist, early this morning. Erik was casted a few days ago for his new orthotics, an event I neglected to write much about because the story would have been identical to the one I related about his first casting over a year ago. In a nutshell, though, Erik yelled heartbreaking things and sobbed, I held him down with a weird, tight smile on my face, and Jeff plastered his legs like a mummy. I noticed Jeff's hands shook a bit as he worked. I am sure that all three of us wished the whole thing was over, and it eventually was. There was much rejoicing. And a glass of wine for lunch.

Today Erik won his battle with anxiety about riding the elevator there after a lot of coaxing and then simply gently coercing him to enter the thing. If I ever happen to meet someone from the Otis Elevator Company, I will be sure to inquire why they bother with the pleasant chime that sounds when the car stops at each selected floor when it is preceded by some sort of obnoxious, raspberry-like buzz from hell between floors. Little things like this sometimes make public outings difficult for Erik. As a result of these little surprises, I lose the first layer of my skin on whatever body part Erik latches onto, and I then have to scrape us both off the ceiling. Today, though, Erik was a champion, and I kept the skin on my arm.

When we located the office and were ushered in by an alarmingly perky receptionist, Erik cried again upon seeing the examination room. I shrugged at her and smiled as she turned to leave and held Erik tightly on my lap, playing with some toys we borrowed from the waiting room and asking him questions about construction equipment. Jeff entered and said hello. Erik replied, "Hi, buddy." After our initial pleasantries, Jeff then proceeded to remove the orthotics from a layer of plastic wrapping. As he did this, I struggled to keep my mouth from very slowly but surely falling completely open.

I couldn't help but think there had been some sort of dreadful mistake.

I was told they would be less bulky, and I suppose they are if you consider the fact there are two fewer straps and one less buckle on them. The joints are gone, and the casings are completely rigid. His lower leg is actually unfettered in the front, free to leave the brace if he decides to bend his leg to attempt a stooping position, although I'm not sure how this will work inside the legs of his pants. His foot will always be flat, making it impossible for him to walk on his toes, and that's the whole point of these wretched appliances.

In My Head: Let's see. Come on, Nancy. Look at the bright side! They're uglier than sin, but think of something positive. Pull yourself together, girl!


* They will hopefully continue to help him walk correctly and avoid costly, painful surgery in the future.

* They are clear.

* They will guard against rattlesnake bites.

Oh, God.

This is not what I had pictured in my mind at all. As I probably told you before, a stranger once looked down at Erik, saw his orthotics, and asked him if he was about to go skiing. We happened to be at church drinking coffee at the time. See, I was only hoping they would be less boot-like to avoid this kind of awkward social interaction. Instead of ski boots, they resemble some sort of space age equestrian garb to me. They will look even more bizarre than his old ones did when he will put shorts on this summer, as they will likely flap around as he stoops down to play.

Jeff warned that Erik will walk "weird" and to call him in the next few days to report how he is adjusting to them. To make matters worse, his $60 tennis shoes no longer fit over the gigantic plastic feet. The company I depended on in the past for his special shoes seems to be in transition and/or discontinuing the one style that works with his clothing. I plan on spending tomorrow morning at Payless Shoe Source attempting to rip the guts out of children's sneakers without being arrested. Worse yet, I could be hauled in for questioning under the Patriot Act and questioned about my relationship with a guy named Richard Reid.

Wish me luck.

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Monday, March 10, 2008

Marketing Madness

Random Thought of the Day: Can someone at Huggies please explain why it is now necessary to put essence of cucumber and green tea in baby wipes? Okay, okay. I can kind of see the reasoning behind the cucumber. If I felt the need to slather vegetable paste on my bottom, that would be my first choice. But the green tea? Really. Do my child's buttocks need to be invigorated? Detoxified? Infused? Doesn't anything smell like plain baby powder anymore?

They're butt wipes, not finger sandwiches, people.


Saturday, March 08, 2008


I'm sorry I haven't put my fingers to this keyboard much over the past week. The illness Erik continues to have was transferred via a river of drool to my own body. I hate to blame anyone in particular for my misfortune, but I suspect Stinky Dog, the recipient of a great deal of my son's love, could very well be the culprit. Yesterday my father and I were calling this pathetic, innocent-looking stuffed animal "Typhoid Stinky" as Erik asked us all to kiss the puppy's saliva-soaked, germ-infested nose. I have felt like a wet rag for days and am now losing my voice. For the moment, though, I am enjoying sounding exactly like Lauren Hutton. It's kind of sexy. Just don't look directly at me, as that will instantly ruin the effect. Nobody thinks red-rimmed nostrils are attractive. Nobody I know, anyway.

I attempted to chicken out of the WS convention scheduled for this summer. My dear sister-in-law and her family just received news they will be unable to attend in July, and I called my husband immediately, suggesting we fly instead to Key Largo (I saw it on television and immediately wanted to dip my toes in the sea there). No dice. He said he thinks the convention is important, and I had to agree. I just wish I wasn't so scared. Yeah, I said it. I'm completely freaked out by the whole thing.

The packet we received to sign up for the convention is completely overwhelming in itself. It actually has a table of contents, for Pete's sake. There are a billion classes we need to sign up for now, and we need to determine our child care needs during the convention NOW. However, as I flip through the guide, I spot many topics that interest me, including those regarding dental and vision issues, future employment, teaching those with WS how to read, special needs trusts, cardiovascular and anesthesia concerns, transition to kindergarten, psychotropic medications, and GI issues.

I suppose that it's looking into the future that terrifies me. I have been surviving beautifully by taking this thing one day at a time, not glancing up much to see what's ahead unless absolutely required to do so. It's just too scary right now. I can barely look at an adult with WS. I only met one last year and can barely look at the videos of them.

A few days ago, someone questioned me about the severity of Erik's WS. This actually happens regularly, as most people are quite impressed with Erik's abilities. They queried, "Erik's Williams is mild, right?"

The truth is, we don't know. From what I know, my kid's brain is likely smaller than most brains. The convulsions are likely shaped differently than most brains. If jacked-up brain structure and function can be mild, sure, maybe it's mild. Erik is healthy. However, the truth is, there is no way to make this diagnosis feel "mild" to me. Williams is an absolutely horrifying thing for a first-time parent to discover in their baby. I felt as if our family was almost contaminated by something dirty for the first year. However, we learned to live with it and tried to move on, enjoying our child immensely, trying to take in all of the "normal" that we can. I am determined to enjoy everything most mothers do, because, damn it, I feel as if I earned it by now. I'm sick to death of being separated from other children by panes of glass. Give me birthday cake and friends and playgrounds and toys! Now! Don't we deserve those things? At the same time, all of these things are extremely difficult or impossible for our son to enjoy. There is a lot about Erik's syndrome that isn't mild at all. It is disabling on a daily basis, and I try to smooth out the bumps as much as possible. There is always something that throws a wrench into Erik's ability to enjoy life at a simple, "normal" level.

Well, everything except birthday cake.

Am I ready to attend a convention surrounded by people with WS? Especially adults who seem so dramatically different? Hell to the no! I nearly break out in a rash thinking about it. Looking into these faces means I'm quite possibly looking into Erik's future. That, my friends, is the hardest thing I have EVER had to do. Why? Doing this means facing the thing I have to admit I hate with a purple passion. The thing I silently complain that I didn't sign up for and am only barely handling mentally most days. Worst of all, it means admitting there is a part of me that doesn't want my kid to look like "they" do. Act like "they" do. Be like "they" are.

It means I must admit that I am that shallow.

It means that to succeed, I must admit that "they" are part of the special family my son belongs to and somehow muster enough courage to accept these people and this diagnosis as part of my life once and for all -- despite my own pathetic limitations and fears. This will likely be the biggest reality check of my life. There will officially be no more room for the luxury of denial after this convention. I will be required to let go of what remains of my old expectations that formed the glorious day I found out I was carrying my son inside of my body.

Because some things were not meant to be. That's reality. And Erik will always be my Erik the Magnificent, WS and all. It's easy to love Erik, and that comforts me.

I have to go.

I once burst through the front doors of a building to take greedy gulps of night air into my lungs when a social situation became unbearable. Shortly before this, I quietly backed out of the group of people I was surrounded by and made a quiet exit. I have always required time alone, and my fight or flight kicks in beautifully when I am overwhelmed. I can see myself doing the same thing again in a less dramatic way during the convention. When I arrive in California, I will be sure to locate a dark corner in the hotel restaurant or bar where I can enjoy a 7&7 in front of Fox News and a copy of USA Today, away from all classes and any meaningful brain activity whatsoever. I think too much as it is. I also plan on finding the gym right away and hope I will have enough strength to spend at least part of each morning there, sweating out any moisture that might threaten to spill out my tear ducts later.

As long as I have a little corner to myself, I'll be fine.


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Wednesday, March 05, 2008


Erik's friend Sophie (also with WS) was the subject of a post on a local blog yesterday. After reading this wonderful description of how she appears to someone outside the strange world of WS, I thought it was important to share. Yeah, it's tough being mired in all of this special needs stuff on a daily basis, but this illustrates how important it is to stop and watch how the rest of the world reacts to our special children. They have a profound effect on the lives they touch.

I plan on stepping back and looking through someone else's eyes on a regular basis, especially when I am feeling sorry for myself!

You can read about Sophie here. Thanks to Sophie's mother Heather for e-mailing me the link and to Wilson Parrish for writing such a dear piece on my son's friend! I hope Erik will get to sit next to someone as kind as his son someday.

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Tuesday, March 04, 2008

Lunchtime Interview

Quote of the Day

Never apologize for showing feeling. When you do so you apologize for truth.

-- Benjamin Disraeli

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Monday, March 03, 2008


Erik is doing much better today. He is a bit crotchety, but the fever seems to have broken after two days of wrestling with it. I can't remember a single time Erik has ever fallen asleep on my lap or on the couch since he began walking. However, this weekend he came to me and said, "Couch?" He crawled up onto my lap and fell asleep. We spent most of the day yesterday watching Food Network challenges and Elmo. Because of Erik's exceptional health, illnesses seem ominous to me. I want to hold him and cry along with him.

Erik detests the flavor of Advil. I have been squirting it into the space between his cheek and his upper teeth with a dropper, forcing him to swallow it. Today I gave him a dose and told him what a great job he did of taking his medicine. He smiled, looked down at the stuffed animal he was clutching (Stinky Dog, of course), and began to talk to him.

As he turned to walk away, he said, "That wasn't so bad, Stinky."

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Sunday, March 02, 2008

Degrees of Panic

Erik began screaming last night in the middle of his bath. Straight out of the blue. Brian and I hastily dried him off and put him in his pajamas as he continued to wail. I carried him to the living room and held him against me. Within a matter of seconds, I felt the temperature of his skin increasing to an alarmingly fiery level against my neck. We set Erik on the floor for a moment, and he slowly collapsed, resting his forehead against the couch in a delirious haze. His temperature read over 101 degrees, yet we knew our thermometer always reports measurements on the low side. Although he seemed perfectly fine before he was happily deposited into the bathtub, at this point, he just couldn't seem to hold his head up. We tried to force the last of the Children's Tylenol we had in the house down his gullet with a dropper, but he spit it out, continuing to scream. I couldn't blame him. The medicine was awful, ancient, bubblegum-flavored stuff crystallizing in a small plastic bottle. The boy is simply never sick. I stuffed my feet into my shoes, threw on a coat too light for the weather conditions, and drove to the store.

As I carefully plucked boxes of Advil and Tylenol from the shelf in front of the deserted, shuttered pharmacy and made my way to the baking aisle for Erik's favorite flavors of gelatin, I found myself dodging large, drunken bears of men in their 20s. I feel so incredibly tall at the store during the day. Not so much at night. Everyone I encountered seemed like an obstacle I needed to overcome. A portion of the crowd beat me to the 15 items or less checkstand as I came around the corner. They glanced at the paltry contents of my basket and frantically counted items to justify their rightful places in line in front of me. The remainder of the checkout stands were clogged with noisy shoppers. I wanted to scream. Five girls madly pounding out text messages on their phones purchased a number of small items. Their lengths of platinum hair, streaked with some sort of gothic black dye, were all sprayed into place in an almost identical fashion. They all wore the same type of hip-hugging jeans and layers of thick makeup. They looked absolutely identical. What struck me the most was how they labored to work golfball-sized gobs of chewing gum with their mandibles. It looked like painful, ridiculous work. After my irritation was overcome by amusement, I attempted to guess their ages but found myself completely stumped. Their transactions came to a close, and the freakishly tall and spindly gray-haired couple behind them walked a couple of steps forward beside a chubby block of mozzarella and some produce wrapped in a strange collection of used plastic bags riding on the conveyor belt. The checker, who appeared as if he had a horrendous case of scoliosis, strained to look up at this couple, confused by the strange bags. They haughtily explained they were reusing bags they had at home. I groaned to myself and glanced down at one of the eco-friendly bags I always bring with me to bag my groceries in. I could have cared less if my groceries were bagged in asbestos at this point.

Come on, come onnnnnnn. Get the hell out of my way.

Finally, I was free to walk out with my purchases. The automatic door hissed open, and the store spat me out into the dark, 25-degree evening studded with an amazing array of winking stars and planets. My Jeep suddenly looked as if I had parked it miles away, and I quickened my already frenzied pace, passing numerous people carrying cardboard-encased blocks of cheap beer like a stream of drunken ants. A large truck nearly ran me over and then screeched to a halt. The man walking in front of me yanked the door open and jumped into the passenger seat. I climbed in my own vehicle at last, slammed the door, and locked myself in. I turned the key and felt the world come into focus again. I reminded myself to slow down.

Even mama bears get speeding tickets.

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Saturday, March 01, 2008

Every Single Morning

I hear Erik talking to himself in his bedroom, and I open his door, which squeaks like an injured mouse. I wince. At first, there is no movement from his bed in the dimness of the room, but his little blond head suddenly pops up, buoyant with curiosity, to determine who has just entered. I make my way across the impressive debris field of toys created before he decided to finally go to sleep the night before. I lean down and crawl around the rail to lie next to him in his tiny bed. I do this every single morning.

"Hi, Mama!"

"Hi, Skooby. Hey, gimmie some pillow. And some blanket, too."

He giggles as I make a giant fuss getting comfortable, jostling him around excessively, grunting, and rudely yanking our favorite oversized baby blanket towards me. I notice that it appears as if he is beginning to actually use the blanket while he sleeps. That's new. I throw my left arm over him and draw him close to my body as if I am slow dancing with the tiniest prom date in the world. He is quiet for just a moment, and his quick breaths tickle my cheek. He begins speaking about trucks, and, as I do every single morning, I wonder what my kid's dreams are made of.

He allows me to hold him like this for some time, and we have the same discussion we always have at this time of day. He names every piece of construction equipment he can, and then he says the same two words to me. They are deliberate and form a statement, but I know him well enough that they really make up a hopeful question, and I answer him accordingly. We do this every single morning.

"Daddy's home."

"Yes, Erik, Daddy's home," I answer. "He's in bed. Stay a bit and cuddle with your mama. You can't go right now because I love you."

He tries his best to lie still while I hold him as tight as I can without crushing his little body. Not knowing what else to do, he starts another familiar monologue as if he is reading from a script he keeps hidden beneath the mattress. As I hear the exact same words on yet another morning, over and over, I feel a squeezing ache inside my chest. I listen to his beautiful little voice and begin wondering what other children his age talk about in the morning. I honestly don't know. The words he chooses and the way he uses them sometimes seem strange, but I couldn't explain how if I tried.

I do this every single morning.

My thoughts are shattered by a pair of large feet kicking in footie pajamas. It appears as if he is attempting to swim away from me. As I reluctantly loosen my grip on him, his coltish legs swing around effortlessly in order for him to back out around the gate out of bed.

He says, "Thank you, Mama."

"You're welcome. Hey, Erik, I love you so much."

He grabs the reeking, drool-soaked carcass of his favorite stuffed animal, Stinky Dog, and crams whats left of its syphilic-looking nose into his mouth. He shakes his head back and forth, loving the poor thing violently as he begins to go find his father.

He pauses just long enough to respond. He removes the soggy animal from his mouth. A smile stretches across his face, and his eyes squint nearly shut. I'm surprised to see this expression appear in the middle of our strange morning ritual. This certainly isn't in the script. I see the same rare, joy-filled, angel-channeling expression overtake him just as it does when he sings a song with his whole body.

He replies, "I LOVE YOU, TOOOOOO!"

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