Erik Quinn: The Heart of a Family: March 2007

Friday, March 30, 2007

Can You Dig It?

I'm thankful it's Friday.

This week I was invited to attend a party out of town by my neighbor friend and her husband. Not just any party -- a 1970s theme party complete with disc jockey and fourteen hundred dollars' worth of catering at some country club. To me, it sounds like the soiree of the century. If I go, I will spend two nights away from home. My first instinct was to bury myself in work and let my waning headache serve as an excuse not to go. After all, social events induce instant hives in me. However, now that my husband and my parents have reminded me it's perfectly acceptable for me to go and that I'm due to have some fun, I'm giving it some thought. It DOES sound like fun. What should I do? Maybe this is a good time for me to demonstrate my comfort zone has expanded like never before.

Okay, okay! I'll go.

Now I have to find something to wear. Something in a nice velour, perhaps.

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Thursday, March 29, 2007


I'm waiting for this euphoria to dissipate that I experienced on the one-year anniversary of Erik's diagnosis, but it hasn't one bit in three weeks. It has been one hell of a ride for the last year, but I'm honestly HAPPY with bad days few and far between. I was a little hesitant to post what I did last time but have only received positive feedback and support. I don't want to sound ungrateful for WSA or the listserv, because I'm not. I just find myself in a new phase, having successfully survived the last one (it wasn't pretty, but I did it). I am finding friendships and family are more important than ever now and want to celebrate life.

I made this slide show to remember all of the phases in my life and remember everything that got me to where I am sitting at this moment. I also want to thank all of you for giving me strength when I had none of my own. You will see the good, the bad, and the hopelessly dorky, but it's pure me. It's fascinating to me to take a look back at my old jobs, my travels, and time with my friends and family. Take a look back at your life and what you have been through in the past, and you can see that all things, good and bad, have made you who you are today, whether things turned out the way you expected or not. God knows my life didn't, but life is certainly good to me, anyway.

A very wise man once said, "Welcome to wherever you are." Okay, so it was Jon Bon Jovi, not the Dalai Lama, but I still like that immensely.

Wednesday, March 28, 2007

Last Serving

One year ago I subscribed to the Williams Syndrome Association (WSA) listserv. I'm not certain why I believed this particular group of adults would differ from those in the "real world," but I was probably so relieved to find people with children like mine that I was completely blind to the cattiness, bickering, assumptions, and judgment sometimes expressed there. I chose to receive a daily "digest," which means I get receive all daily e-mail messages at once each day. I stopped reading it on a daily basis months ago, as there are many truly desparate messages regarding extreme cases of WS that do me no good to read at this point. There are stories of children with WS being talked into sex at school or suddenly passing away from hidden health issues. I have been very careful about what I read there, as I know it is much too early to do any sort of worrying about these things and I can only do what I am able to do to care for my son at this time. After that, what will be will simply be. My heart goes out to the people telling these stories, but I can't take on any more negativity or pain myself. Even if I tried, I am not wearing their shoes and will never truly understand what they are going through. I end up feeling completely helpless because there is nothing I can say or do to help them. On the other hand, parents are sometimes actually scrutinized or questioned after expressing how great their child is doing physically or mentally by others whose children aren't doing so well. Depressing.

The time has come to read the listserv even less, if that is possible. I don't plan on unsubscribing from it, as I continue to glance over the topics before I delete each daily digest and plan to continue to post questions as they come up when I cannot find an answer myself (the last question I asked generated no response, anyway). There are sometimes alerts on articles or studies I find very helpful. I just don't have the energy for the badness I feel in this particular place anymore. I can completely see why the "old timers" eventually unsubscribe. It can be a light in the darkness at the beginning of the journey, but the negativity can be poison.

For the most part, the people on the listserv are kind and accepting, and I'll be sad to stop reading them there, but it's time for me to take another step back as I heal and go on with my life. Hopefully, some of them will continue to visit me here and e-mail me personally. They are a valuable resource in this journey, and I don't know what I would do without them.

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Tuesday, March 27, 2007

Real Moms

I have been tagged for the first time by Lizard Eater with the "Real Moms" meme. I'm so sorry, LE, that I am tardy posting on this subject! Without further ado, here is my response.

Real Moms Carry Kleenex

Since I became a mother, I have discovered that every pocket in my clothing contains either an empty string cheese/granola bar wrapper or one of those tiny packages of Kleenex (this in itself is disturbing, because I don’t recall ever buying them).

As a mother, you can no longer carry one of those adorable, beaded, postage stamp-sized purses like you used to. Remember the days of carrying only your identification, a tube of lipstick, and a couple $20 bills?

Being a mother requires being prepared for any natural disaster or act of God. If we suddenly became trapped in my vehicle for an entire week, I would likely emerge wearing a fresh coat of Cover Girl Almost Nude lipstick carrying a still sweet-smelling, smiling, well-nourished 2-year-old.

These days, my purse contains an extra diaper, wipes, baby powder-scented diaper disposal bag, an extra dose of reflux medication, Tylenol, iPod conveniently loaded with episodes of Sesame Street, packets of 50 SPF sunscreen, and a variety of portable snack foods -- and that’s just the top layer. This, of course, does not include my own personal hygiene and beauty products or items related to my own work or play. When my cell phone rings from the bowels of my purse, it is often impossible to locate it before the caller is sent to voicemail, as the phone itself works its way down beneath layers of these essential items far out of reach. There is a small circle permanantly etched on my checkbook cover from where a bottle of bubbles once precariously balanced in my purse as I toted it to the park.

It’s amazing a relatively small (read: 33 gallons) satchel can accommodate what my life requires. I think I have an explanation for this phenomenon. There are days I am quite positive that if I plunged my arm down through the depths of the paraphernalia in my purse, my hand would mysteriously emerge through a layer of winter clouds over a land called Narnia.

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Monday, March 26, 2007


This weekend was a social whirlwind. My friends Ed and Martin came to town, and we spent Friday night with them at Kathy and Alan's. Alan took Erik on a ride on his new motorcycle. Needless to say, Erik was in heaven. Erik gets truly excited when I tell him we are going to visit Dominick and talks about him nonstop. He is also asking me often about his friend Sammy! Finally I can say that my kid likes other kids.

Saturday my college friend Steve arrived from New York with his wife Amy. I truly believe Steve and I were destined to be friends. I answered my phone in my dorm room one lonely evening 17 years ago, and Steve was on the other end. Our friendship began that night through a random, playful prank phone call as he hung out with buddies. Because he made me laugh, I kept on the line. We have been talking ever since. When we began to lose touch during college, as luck would have it, he came into the drugstore where I worked with an application, and we rekindled our friendship again as coworkers. I know it sounds bizarre, but it was just meant to be. When I flew to Denver to attend my friend Becky's wedding in 1999, Brian was unable to go with me but gave me the green light to take Steve instead, who lived in Colorado at the time. Steve was a gigantic hit with my friends at the wedding, and the trip ended up being one of the greatest vacations ever for most of us (Steve wisely said it was the second best wedding he had attended). Ed and Steve hadn't seen each other since that wedding, and they met once again this weekend. We laughed ourselves sick.

Saturday Ed, Martin, Steve, and Amy came to the house, and we all went on a walk across the road in the sagebrush. The weather cleared up in the afternoon and treated us to bright blue skies and a view of the snowcapped mountains. Brian and I took them on an impromptu tour of the cave across the street. I hadn't gone inside it yet, and I was surprised at how large of a room it was. Brian went down first to make sure we weren't disturbing anyone using the place as a lava motel. After our brief spelunking adventure and then an hour of exploring the dirt trails in the fresh air, we headed for a nearby restaurant and ate until we hurt. The smell of guano and cave didn't slow us down one bit in the dinner department. Steve's friend Steve joined our group for dinner. Ed and Martin said their goodbyes afterwards, and the rest of us drank beer and ate baked goods (oy!) back at the house, retiring fairly early.

As the weekend went on, our group got smaller each time we assembled. This morning Erik and I met Steve, Steve, and Amy at a bakery for breakfast, where Erik shared my scrambled eggs, toast, and yogurt. He consumed a bowl of cereal before we left the house but ate again with gusto. I said goodbye to the three of them after we enjoyed our meal, and then it was officially Monday morning. And here I sit. I feel very lonely now.

I have thought a lot about my friends this weekend. As we age, our lives change dramatically. These changes, positive or negative, test the friendships we have. I lost touch with some friends because we no longer had things in common as our lives changed. Some friends had children before I did, and we lost touch. As I look back, I can see there are a handful of friends that have remained constant in my life, even if we are separated by many miles or don't talk very often. The magic is still there when we see each other again. It is an even bigger bonus to realize the people my friends chose to spend their lives with are equally enjoyable to spend time with. What can I say? The people I love have excellent taste. Equally important are the new online friendships I have been lucky enough to gain through Erik, and I hope that as life changes for our children, our friendships will strengthen over the years.

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Saturday, March 24, 2007

He's Gonna Hurl...

Last night Brian and I were enjoying a quiet evening watching television when Erik came into the living room and said, "Round and round...round and round." He then began to spin himself around multiple times before stopping and immediately staggering into the nearest door frame or furniture. He demonstrated this feat several times. As disturbing as the whole thing was (it reminded me of the mad cow footage on the news), I found it horribly funny. Keep in mind that on a good day Erik's motor control isn't the best, and running into things is a pretty common event for him. Sadly, I think he gets some of that from me.

Wednesday, March 21, 2007


Yesterday as Erik and I were getting ready to go to school, I heard updates on the story of a 21-year-old woman who disappeared from this area in 2003. They found her body in the last week or so buried in a shallow grave in the woods, and two arrests have been made. An autopsy revealed that she was killed by blunt force trauma to the head. She did not die a pleasant death and was terrorized by her killers before she left this world. Her father cannot afford her funeral, which takes place this week. He is a bus driver here, and his coworkers set up a bake sale at a bus stop off the main drag. Erik and I loaded into the Jeep 15 minutes early and went in search of the bus stop. I saw a couple small folding tables manned by volunteers on either side of a small street. I parked in an adjacent lot and approached one table, where a sleepy-looking woman without makeup wearing a brown, flannel shirt sat. Behind her in the back of a truck sat a bearded, silent, tough-looking man and a large dog. There were muffins and brownies scattered over the surface of the table in crudely labeled plastic bags. I chose three of each and gave her the contents of my wallet. After she thanked me profusely for my extremely modest donation, we made our way to school. I lead Erik up the hallway to his classroom, where he walked in by himself and demonstrated his skills removing his jacket halfway. A therapist led him to his cubbyhole and helped him deposit his things, hanging his jacket on a metal hook. They made a big fuss over the new football zipper pull I just purchased. Bev handed me a stack of information on Therapeutic Listening(tm), including the phone number and name of our local specialist, and I headed down the hallway to parent group.

Parent group was packed. I set my collection of baked goods on an end table. There were three children present, including two babies and a 6-year-old autistic boy who grabbed one of my muffins and proceeded to scatter banana nut-flavored crumbs evenly over the carpet and furnishings from one end of the room to the other. I resisted the intense urge to search for a Dustbuster. There was no set topic of conversation this week. We talked of being teenagers and of the stupid things we did. Of course, my misadventures paled in comparison to the women's tales around me. The stories they told were knee-slappingly funny, but there was an underlying sadness to them all. Their stories seemed to hint of various levels of abuse, absent parents, alcoholism, and custody battles. One woman told of her child jumping a train at age 12 in an attempt to run away. He was missing long enough to print and post missing posters. One woman was shot in the buttocks by an angry landowner with rock salt after she and her friends refused to stop trespassing. Most of the time I forget that these women differ from me at all anymore. While they seemed completely foreign and almost unapproachable a year ago, I found that we have a lot in common, and I now feel at home with them. It is obvious they love their children as much as I do my own. However, sessions like this remind me that I am indeed from a different world, and Erik will be, too. I have learned to count my blessings. As I watch textbook cycles perpetuate before my eyes, I sometimes feel the world is hopeless, full of struggles with no end. We all seem to pass our struggles on like a dark legacy, no matter where we come from or what we have experienced.

After our sessions were over, I picked Erik up and we walked down the hall and out the door. He said nothing, as the children bustling around us were happy and noisy. Once we escaped into the fresh air and relative quiet of the outdoors, I heard his voice say a word I have not heard from him before.


I looked down at him and stopped in my tracks, completely forgetting we were obstructing the waiting taxi and buses in the tiny parking lot.

"What did you say?"

He repeated it clear as day.


He lurched forward again, looking at the sky. I looked to my right. Sure enough, there was a silver Volkswagen Beetle parked there. One of the new jobbers. I laughed out loud. When I told my mother about this later, she informed me that during their afternoon sessions watching vehicles drive by from their comfy seats in front of the picture window, she is absolutely certain about a car's make and model before she reports it to Erik, as she knows he will remember. He can also now identify a Jeep Grand Cherokee from a mile away.

No matter where I am in my head, the boy can always get a smile out of me.

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Tuesday, March 20, 2007

Therapeutic Listening

I woke up a half hour ago thinking it was three in the morning. I put my contacts in and see that it's after five. Thank God.

Yesterday I received a phone call from Bev, Erik's early intervention specialist, who asked if I would like information on a treatment modality called Therapeutic Listening. Apparently this is something offered at our local hospital. Despite working across the street from the hospital itself for a decade, this is the first I have heard of this. Upon doing some preliminary research into it on the Internet, I read about many facilities singing its praises. There are claims it may improve sleep/wake cycles, toilet training, focus and attention, fine motor skills, communication, hunger/thirst cycles, establishment of body midline, sensitivity to noise, and much more. All of the traits listed to help determine if a child would benefit from the program seemed to fit Erik perfectly. This is a program geared to help children with sensory integration disorder and many other problems. I admit that my first reaction was one of skepticism. I did not find much written on what it actually is. In addition, the name has a trademark beside it, which also makes me wary (after all, so does the ThighMaster). From what I can tell, it involves listening to specially manufactured CDs which contain music with specific frequencies on them while performing supervised movements and activities. Classical music is utilized frequently in this modality of therapy, as it provides the most desired frequencies.

I tend to be a skeptic about anything unless I have some evidence it works and at least a little knowledge about it. There are things on this planet that I know are wonderful but remain a little mysterious to me in terms of how they work, such as penicillin and passenger planes. I do know, however, just enough to have fairly confident faith in them. I'll probably never die of streptococcal pharyngitis, and it's unlikely I'll ever need to use an emergency exit on a jet. Who knows? Maybe listening to a little Bach and moving around will help Erik. The voices in my own head are telling me to go for it.

Note: I have the sudden, unexplainable urge to dig out my old Kiss CDs now. Maybe I'll do a little Therapeutic Listening(tm) of my own this morning before we head off to our classes.

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Sunday, March 18, 2007

Sunday Drivel

Last night a friend gave me a CD of Richard Cheese & Lounge Against the Machine. It is one of the funniest things I have ever heard. This gentleman borrows a variety of popular songs from the 80s, 90s, and today and sings them lounge style with a big band feel to them. I thought his rendition of Guns N Roses "Welcome to the Jungle" was the funniest thing ever until I heard "We Are the World," "Gin and Juice," "Baby Got Back," and "99 Luftballoons." Whew. Classic. It's an adults-only CD, as the language is a bit dicey because some of these songs are from the heavy metal and rap genres. However, in my opinion, it only makes them that much more ridiculous and fabulous.

I took the plunge and entered my first essay contest last year. I chose a topic regarding home ownership. There were over 13,000 entries, and they have been announcing monthly winners all year. The grand prize is $250,000 to go towards a new home or property. They are posting the winners on April Fool's Day. My chances of winning are slim, but it has been fun to dream all this time. According to National Geographic, my chances of winning are about the same as dying in hot weather (1 in 13,729) and better than being legally executed (1 in 62,648). Golly, that's good news! I'll miss the suspense of waiting, but a year is a really, really long time to wait for anything.

Yesterday I put together a submission for my first Pacific Northwest writing contest. I entered one of my poems this time. That was a little more difficult for me, since those tend to be gut-wrenchingly personal. It's sitting in an envelope downstairs, and I feel a little like I did when I was in my creative writing class in high school -- vulnerable. I'm getting braver when it comes to putting my writing out there, and I owe a lot of that to you. I haven't written in years before this blog. I'm hoping to get published somewhere eventually, and this is a good place to start. The only writing contest I ever entered before that I can remember was the Bulwer-Lytton fiction contest, a competition to pen the worst opening to a novel in various categories including "brown bag" (sexy stuff), "It was a dark and stormy night," science fiction, and many others. That was way fun. Now that I think about it, I should try again.

I'm hoping today is as beautiful as it was yesterday. It was over 70 degrees again. Erik was into everything yesterday. He is rebelling against his only nap now, which may disappear entirely, and threw handfuls of dirt from the planter on the landing twice yesterday, requiring me to haul the vacuum hose up the stairs. As cranky as this makes me, I can see he is a whole lot of typical 2-year-old these days. That's a good thing.

Off to shower. Have a wonderful day.

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Saturday, March 17, 2007

Fighting Words

Normally I think the world is completely off its rocker in terms of being "politically correct," but I have genuine difficulty understanding why we use slang words and expressions in casual conversation that began as cruel slams against others, even as adults. I admit that I have done it in the past without thinking. These words are so watered down from overuse that the people who use them fail to see any harm in them. However, they do inflict pain on some who are listening. You will not see me visibly flinch when someone casually uses the word "retarded" in conversation with me, which happens at least once a week, but on the inside I feel the sting and tend to hear nothing that person says for probably a full 20 seconds afterwards. It sounds ugly to me and disrupts my train of thought, requiring me to unclench my teeth and pull myself back together. I can't help but imagine how my son will feel someday when he becomes aware of his differences and hears that word coming from people who love him. How confusing would that be?

I have removed the "R" word and many other words like it from my vocabulary unless they are used in the appropriate context. I hope you will do the same. It's not easy, as they are so ingrained in our dialogue, but I believe it is worth the effort.

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Thursday, March 15, 2007

Drive Through Giggles

Yesterday was an amazing day. The sun was shining, and the mountains gleamed. The only time I put on a coat was early in the day when Erik and I ventured outside. I sat on the front porch to dry my hair in the sun and enjoyed my coffee while I blew sparkling bubbles for Erik.

After work, Brian and I decided that we would make a rare, admittedly naughty after-dinner run to Dairy Queen for Blizzards. The three of us piled into Brian's truck and enjoyed the orange glow of the sunset above the mountains on our drive. This extra hour of daylight means I no longer have to miss this beautiful sight while I sit in my office working.

The drive-through was clogged with cars filled with people with the same idea. We craned our necks to read the sign and decide what we would choose. Brian suddenly looked at me with a hint of panic in his eyes and announced, "My window doesn't roll down!" You see, it has been at least a year since Brian's window has operated correctly in his truck for some mysterious reason. It is quite obvious to me that men have a different set of priorities than women. I consider myself a completely sane, middle-of-the-road feminist, but it is pretty darn apparent to me that no matter how you slice it, men and women are entirely different in a thousand different ways, this one being a prime example. In the past year I have overheard him mumble something about borrowing some sort of special wrench from the neighbor, but nothing ever seemed to come of it. Understandably, he had much bigger fish to fry, and this little annoyance was soon forgotten. The last year has been a little difficult, to say the least.

Brian drives a double cab, four-door Dodge pickup truck. We purchased it after Erik was born because it seemed to be a safer family vehicle to drive than my tiny Toyota pickup ever was. To my complete amusement, when we pulled up in front of the drive-through speaker, Brian quickly reclined his seat so that the top of his head was just at the level of the window behind him. He then began confidently shouting his order from the region of the back seat. Erik looked down at his father, who was suddenly lying beside him, with a completely blank, slack-jawed expression. That did it. I burst into a uncontrollable giggle fit, which quickly spread to Brian, and he had to fight to contain himself long enough to get our order out. I was curious to see how he would pay for our order and retrieve our food. I was disappointed to see that he did not pay using that same method but drove a little past the window and simply opened his door. We drove home before our treats melted, and Erik was pleasantly surprised to find this bizarre oddysey yielded a little bowl of Oreo ice cream for him to savor.

There are many things in life that make it worth living. I have to say that, in my opinion, laughter is as close to heaven as we get at this point. Equally delicious is hearing my husband's rare giggles. I love that. At the risk of embarassing my very stoic, serious, professional, normally very dignified husband, which was certainly not my intention, I had to share this story.

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Tuesday, March 13, 2007

One Year Anniversary

She was no longer wrestling with the grief but could sit down with it as a lasting companion and make it a sharer in her thoughts.

~George Eliot

I woke up expecting to feel a mix of emotions. Strangely, I can't say this is truly the case. I am expecting anything today emotionally, but right now I feel something new in my heart.

One year ago we heard terrible news, but life has gone on. At the moment, the coffee pot is sputtering in the kitchen and I am watching the baby monitor on my desk for scarlet flickers. My son is sleeping soundly in his crib, and my husband searches for something to wear to work. If I were a stranger peering through the windows of this house now, I would think that nothing horrible ever happened at all. Our faces are relaxed, and everything is quiet.

However, we have been at war. We have endured excruciating heartache. I was frequently and unfairly tackled by stabbing grief on sunlit days that originally looked promising to me. Being weak, I broke each time but found that in the end it only fueled my fight. I had no idea that day one year ago how difficult this would be not only on ourselves, but on the people surrounding us. As the last couple months have passed and my focus has shifted, I have finally turned my face up to see the devastating pain my friends and family will carry with them forever as well. A bomb detonated in our family, but everyone in its reach was savagely wounded.

I thank God for the miracle of healing. One year ago I had difficulty feeling like I could simply physically get enough air. I had my first panic attack. One particular evening the week after the diagnosis I sat at the kitchen table trying to eat dinner and was completely unable to stop crying long enough to take a bite and simply swallow food. I felt horribly pathetic and lost.

In one year my dreams have changed. The visions of chunky, twisting, clown-colored ropes of DNA are less frequent. I no longer dream of Erik doing amazing things and wake up to discover they were cruel lies my brain manufactured. They were devastating, but, again, they became just more fuel for the fight.

Most of all, the best part of being one year out is that when I wake up, I don't have to listen to my brain report the bad news to my ignorant heart over and over anymore. That was honestly the worst part of this whole experience. I relived the pain each day as if it was brand new for months. My body and brain now have the facts permanently infused in them, whether I am awake or not. Before I open my eyes each morning, I am already cognizant that Williams syndrome is forever present in our lives, and it is old news. I am no longer destroyed each morning I meet a new day. I no longer am obligated to lose the first battle of the day.

Today's fight --

Nancy: 1
Williams syndrome: 0

So there. Go to hell, WS. Now where's my coffee?

In summary, I have learned there will always be grief, but I am no longer physically suffocated by it. This particular flavor of grief no longer has the extraordinary power it once did over me. I have learned how to harness it and make it my fuel. I no longer fear its bilious taste.

So what do I feel in my heart today? Something I never expected to feel.

Peace. Confidence. Most surprisingly of all, I feel joy.


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Monday, March 12, 2007

Deep Fried Country Fun

Before you say anything, I am fully aware it's nearly three in the morning. I have been fighting an unenthusiastic but persistent migraine curled up deep behind my left eye since yesterday, and it seems that a lot of the medications I have tried contain caffeine. I now have a headache and am completely awake. Between that and the snoring coming from my husband downstairs, I was forced to give up. I even tried to relax on the couch, but it just made me more frustrated.

The good news is that despite feeling like a steaming bowl of Gravy Train, I enjoyed yesterday immensely. I worked out in the morning, which was undoubtedly a mistake, and then spent a lot of the day on the couch watching crime shows while Erik slept. Erik and I did get a nice session of Play Doh time in at the kitchen table, and he spent a lot of time outside with his father. It was nearly 70 degrees yesterday. In the afternoon, I got up, did my hair and makeup, and painted my fingernails to prepare for a birthday barbecue for one of Brian's coworkers. The people at this party rarely see me, as their functions usually involve football games out of town or parties in the evening and I usually am home caring for Erik. I confess I am also slightly allergic to social functions, being on the pathologically shy side. I had to force myself to go to this event, but I imagine that Brian's friends are questioning if I exist at all at this point and I decided to make an appearance.

We have passed this particular house many times on our way over the mountains, as it is on the highway. It's a newer, modest home nestled in the sage and grass among a seemingly haphazardly placed mix of older manufactured homes and newer ranch-style homes with the mountains looming nearby. We definitely enjoy the view of the mountains from our back porch, but the view from this place was spectacular. I alleviated my jealousy by telling Brian we are due for a volcanic eruption any day now and that I could sleep more soundly knowing we are further away from any potentially deadly, suffocating blankets of scalding ash falling from the sky in such an event (there's a bulge in the earth nearby that is 100 square miles and grows 1.4 inches a year that is thought to be caused by a one-mile wide, 65-foot deep molten pool of magma). I'm still jealous. I'm usually too busy backseat driving on our way by to truly appreciate how gorgeous it is on that stretch of road. I noticed the mountains gleamed all day long like a row of giant incisors in the painfully bright sunshine.

At the house, I unloaded Erik and his paraphernalia from the truck, and he immediately started running towards two ATVs parked in the front yard. He ran his hands over the tires and expressed his amazement with his body language and comments (Tires! Wheels!). Once we detached him from the knobby tires, we entered the home, greeted people in the kitchen, and walked through the back door into a generous back yard, where there seemed like there were a thousand kids at play, crawling up into a playhouse equipped with a slide. I found a seat at a picnic table by a man I recognized from poker night at our house and chatted with him while Erik was content sitting in my lap watching the kids play. Several times I put him down to explore, but he came right back to me. As soon as he would get the courage to wander a few feet away, a child would screech, and he would attach himself to me again. Once my own shyness began to fade, I began to enjoy the group of friendly partygoers. My favorite, though, was Jamie, the wife of one of Brian's coworkers. She had met me once and only vaguely remembered me but sat down next to me like I was an old friend. I don't know heaps about her, but I do know she is some sort of engineer. She formerly worked on a nuclear submarine. She mentioned something about drawing up vectors and threatened to give a lecture on heat transfer as the boys lowered the massive rump of a turkey into a deep fat fryer much too close to the home's siding for my comfort. Her husband, also completely adorable and equally brilliant, invited Erik to sit on a porch-type swing in a log frame between him and another partygoer. Erik actually took his suggestion and wandered over, where the guys plucked him up and placed him between them. He sat there happy as could be for quite some time. I enjoy watching adults marvel at how friendly he is. He's great at parties!

Soon the heavy lid of the barbecue was opened, revealing a mountain of glistening ribs. We loaded our plates and began eating dinner. Erik would only eat potato chips and the granola bar I brought along. He spat everything else out into his hand. The turkey soon emerged from its hot Crisco bath. I admit that I was excited about that, as I had never tasted a deep fried turkey (delicious). Erik somehow knew there would be cake after dinner. He apparently heard someone mention that particular word with his incredible hearing. He sat on my lap, saying, "Cake, cake, cake, cake, cake, cake..." Sure enough, we were called in to sing happy birthday and watch sparklers anchored in chocolate frosting sputter to life and do their thing. Jamie carved out a generous piece of cake and a scoop of vanilla ice cream for me and Erik, and we devoured it as sun sunk behind the mountains and the air began to chill. It wasn't long before we heard the rude, farty roar of the ATVs firing up, and Erik expressed extreme interest in them, noise and all. In fact, Brian and Erik both stood very close to one as it was repeatedly revved up for Erik. Instead of rocking back and forth like he usually does, he only trembled like an excited poodle and bounced up and down, saying, "Again!" and "Quads!" The expression on his face made me laugh out loud. He was excited, terrified, and euphoric all at the same time. We watched the adults take the kids on dusty rides before we called it an evening, loaded up into the truck, and began the drive home.

If I had felt more like myself, it would have been a perfect day. As it turns out, it was close enough for me.

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Friday, March 09, 2007


This movie was shot at the park near my parents' house. You can hear them in the background cheering Erik on with grandparent gusto. I couldn't believe this was my son when I saw this the first time. Erik still struggles greatly with ascending and descending steps and will just crawl on them to get from point A to point B when there is no hand to hold onto for support. My heart breaks every time his therapist works with him on our stairs. It's just normally very hard for me to watch. Imagine my surprise when I saw this! Go, Erik Quinn!

From watching this movie, you might be able to tell that Erik has a hard time determining where the edges of things are. The little spasmodic step up he does into thin air at the top of the slide illustrates my point. He does this a lot. For this reason, he is generally not completely comfortable being atop a platform like this. He knows the edge is there, but the information his brain receives from his eyes seems to be confusing. He will stop miles short of any unfamiliar edge and slide along on his bottom instead. This kind of thing is something I described earlier as one of his newly-emerging skills to compensate for the weaknesses that go along with Williams syndrome. His brain does not process things the way we do, so he simply learns another approach in order to accomplish what he desires to do. It works!

I readily classify Erik as disabled for medical purposes and to qualify for the services we receive. I do not have a problem with that word. However, I believe the following story speaks volumes about what I see when I look at Erik. A couple weeks ago I parked a healthy distance down the street from Erik's school and was walking him down the sidewalk when a therapist spotted us and said, "We leave parking spaces open for you guys in front so you don't have to park so far away!" Without thinking, I blurted out, "Erik's not handicapped! We like to walk!" I laughed long and hard about this later. There I was walking down the street with Erik, a little boy going to special ed class who has no clue where the edge of the curb is and staggers along in plastic leg braces while muttering on and on about wheels and threatening to take a digger every fifth step. What a sight we must have been! To me, we were having a perfectly normal, happy morning. Any handicap he demonstrated at the time was completely invisible to me. Every week I arrive plenty early so that Erik and I have that walk together and he can drink in all of the sights of the vehicles and life around us. Once he is concentrating on heavy equipment operating nearby or watching birds streak across the sky, he lurches along at the speed of molasses in January and sometimes repeatedly crashes to the ground. However, I compensate for this as well by arriving early so we can enjoy the journey. We get there -- and on time! As my pain recedes, the way I visualize Erik and how we fit into the world is definitely shifting into something more positive.

Yes, my son has a truly devastating disability, but I use that particular word to our advantage when it's appropriate and pretty much put it away when we are living our lives. I'm thankful we have a genetic test result to tell our story to insurance companies and medical facilities so that there is little need to explain anything. I'm fully aware of what he has trouble doing, and I now watch him learn to use what he can do to accomplish what he needs to in his own time. If there's one thing Erik has taught me, it's that good things come to those who wait! Erik is much more than a test result or a handicap to me. He's my ERIK through and through, and most of the time that is all I see!

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Thursday, March 08, 2007

Mucho Insomnia

I feel content today but wish I could sleep. I know it was just one-something in the morning when my eyes fluttered for the first time today. I gave up tossing and turning at 3:30. We have pool therapy at 10 a.m. today.

Last night I met my friend Shaena at one of our favorite Mexican restaurants after work. When I worked at the clinic in the offices above her a few years ago, we would sometimes go there with our coworkers for margaritas. Sometimes I really miss working with living, breathing people in an actual office. Then again, I enjoy not having to put myself together to the degree I used to every day anymore. I still put makeup on, roll my hair, and don clean clothing, but most of the time I don't encounter a soul except for my family or the UPS man. My cat is the only one who gives me any static anymore while I'm working. It's nice to make my own schedule and wear my fuzzy spa socks all day. Transcribing requires using one of two foot pedals underneath my desk, and I don't think I could transcribe with shoes on anymore if I tried.

Last night every corner of the restaurant was packed, which was a mystery to me on a Wednesday evening. Even the tavern across the parking lot was beginning to fill rapidly with the Budweiser and hot wing crowd. I squeezed my Jeep into a skinny spot and hoped the cars with the long doors flanking me on both sides were waiting for their drivers to come out of the laundrymat or the ladies' gym and not the tavern. I saw Shaena drive in, jumped into her SUV, and helped her locate another skinny spot to park in before we followed the scent of steaming fajitas into the building. As luck would have it, we didn't have to wait. We procured a booth in the restaurant bar underneath a television set playing a pre-recorded, distant soccer match that nobody feigned interest in watching. This particular bar is fairly small, featuring maybe five carved, wooden booths, a couple tables, and a set of tippy bar stools. The room is decorated in colorful tile randomly implanted here and there in nearly featureless walls. It feels a little like a cross between the Golden Girls set and a cheap resort, but it's fairly clean. There is a rope of white lights sloppily draped behind the collection of bottles lining the bar's mirror, and the waitstaff is predictably surly. I wish I knew more Spanish (then again, maybe not). The food is great. There is always one guy getting drunk on the same stool at the bar who stares at us when we come through the door. The face on this man changes each time I'm there, but he's always there haunting the place. I imagine he's one of a collection of car salesman from our tiny auto row down the street, beaten down after a day of chasing families around the lot and asking them what it would take for them to drive a brand new SUV home. I used to see the same phenomenon at the Italian restaurant across the highway before the displaced ex-truck stop kitchen took over there manufacturing hubcap-sized pancakes and stomach-busting, 12-egg omelets.

We ordered the drinks on special (kiwi margaritas) and embarrassingly impressive macho burritos. They have the best margaritas in town. Sadly, I left only three paltry bites on my steering wheel-sized plate while Shaena ended up packing half of hers in a neat, Styrofoam cube. It was a great dinner, although nothing is ever spicy enough for me. I should carry a supply of hot sauce in my purse. Even standard hot sauce isn't hot enough for me. The tables next to us were pushed together to accommodate a boisterous group probably in their 40s. Shaena briefly ceased speaking and reported that a man was depantsing himself just outside the floor-to-ceiling window for the amusement of the diners trying to enjoy their chimichangas. He eventually staggered in to join the big group for drinks and dinner. He was obviously trying quite hard not to interrupt us but just couldn't help himself and peppered our conversation with obnoxious comments, yelling that we needed to pipe down and laughing so loud I winced.

It was nice chatting with Shaena. We talked about the crazy days we spent together in our teens and early 20s back in the day. We talked about muscle cars, white Levis, guys with combs in their back pockets, and how we used to magically roller skate with the grace of Olympic athletes after a few shots of cheap whiskey. In short, we laughed ourselves sick. We also discussed our families, where we are in life, and how we got here. Overall, it's clear that we are very lucky women to live the lives we do. It's great to have the friends I have who have been with me on this crazy ride for decades now and continue to stick by my side, even when it's undoubtedly quite difficult to be friends with me at times. I know that I am. Amazingly, they have never given up on me. Not once. I felt like a new woman by the time I walked out the door.

Tuesday, March 13, 2007, will be exactly one year since the diagnosis of Williams syndrome changed my life forever. It happened at approximately 2:30 p.m. I am trying not to think too much about it, but I find it impossible to prevent myself from doing so. I know what songs played in the car that day and what we ate. I can barely remember what it felt like to live without WS now. It's too painful and pointless to try, anyway, as there is no going back and there is no cure. I have witnessed some of my other friends on line reaching this milestone and attempted to try that feeling on like somebody else's clothing, but it doesn't seem you can fully understand it until you reach that day yourself. I'm very happy and excited to get past Tuesday, but the day itself brings a very bizarre mix of positive and negative emotions. I'm definitely feeling edgy. One moment I'm laughing, and the next I just want to be alone. In fact, I have felt a lot like being left alone in the past couple of weeks. Then there are the times I surprise myself by reaching out and calling a friend like I did yesterday. I'm lucky that there are people who are genuinely glad to hear from me, will happily meet me somewhere with very little notice, and don't mind drinking margaritas with me, even though they're still wearing scrubs after a long day at work.

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Wednesday, March 07, 2007

Laundry Day Fun

Tuesday, March 06, 2007

One Year IFSP

My wish for you is that this life becomes all that you want it to,
Your dreams stay big and your worries stay small,
You never need to carry more then you can hold
And while you're out there getting where you're getting to
I hope you know somebody loves you and wants the same things too

-- "My Wish" Rascal Flatts

Erik and I just got back from an extended morning/afternoon at our early intervention facility. We went to our respective groups this morning and then had two hours to kill before we went back for our one year IFSP meeting. I drove over to my folks' house nearby and watched The Daily Show and the Colbert Report while Erik played with his toys and brought me books to read. We were both relaxed. The anxiety I felt before our prior evaluations failed to quicken my pulse and cause my stomach to flip like a fish out of water this time.

Brian met us back at the school for the IFSP at 12:15. There was a panel of four people to greet us. They were sitting in an ominously dark classroom with a humming laptop computer. The meeting seemed much more formal this time. I smiled when I saw Bev's bright red "Team Erik" bracelet peeking out from underneath her sleeve. Once we began our discussion, I commented that the goals they set for Erik each time he was evaluated over the last year seemed ridiculously lofty to me at the time but that this evaluation felt very different. In the past it seemed unlikely Erik would come close to reaching any of their seemingly advanced goals, but he has proven me wrong time and time again, mastering new skills and meeting almost every goal as he grows. Today we again set goals, including pretend play, using pronouns, climbing on playground equipment without assistance, using both hands to complete tasks, using three words together, asking questions, and dressing/undressing himself to prepare for toilet training. Erik has already clearly begun to progress towards most of these goals, although his disability makes some typical activities challenging. However, he has demonstrated that he is beginning to physically and mentally compensate in areas he has difficulty with, such as feeling stairs with his toes/feet when he cannot visually determine their edges. In other words, he is beginning to adapt to the world beautifully using his strengths to triumph over his weaknesses. It's an amazing process to watch unfold. I couldn't be more proud of our son.

Because I do not witness what happens in his classes each week, it was wonderful hearing what the other staff had to say about Erik. He is obviously a beloved part of the program. He knows each of the numerous children and therapists in his classes by name and greets them each week, something no other child there is able to do at age 2. His turned in left toe was not evident in class today, but his physical therapist told me she is beginning to determine it is a problem that originates in his hip and pelvis that results from anxiety manifested as muscle tension. He will continue to wear his orthotics for most of the day for the time being to keep his feet flat. They asked us what he loves in order to help coax him to learn, something they all agreed is generally not a problem for Erik. We told them that he loves his family, music, and the outdoors. He is easily distracted and anxious, which is the biggest obstacle in his learning, and we will work on that in different types of busy environments over the next year. This has already greatly improved.

We now look forward to taking a big step. By September, he will likely be the youngest child in his preschool class but will have an extra year there before he enters kindergarten as one of the oldest children, something I see as a definite plus as he begins his formal education. We will probably decide to enroll him in the preschool class at the same EI facility he is accustomed to two days a week for two hours at a time, and he will ride the school bus home. I am hoping there will be typical children in his class.

It's hard to believe that just one year ago we wheeled our quiet, drooling 17-month-old in for an evaluation. He was unable to walk or follow instructions. He did not play with toys appropriately. He barely responded to his name. In fact, he did a whole lot of nothing, although he was very pleasant about it. He really had little opinion on anything at all and had never said "no." Not once.

In contrast, today was an emotional day knowing how far we have all come and how much brighter the future looks. One year ago, I thought my life was over. I thought the darkness would never lift. I did not know how we would begin to survive what had happened. My son would either die or live his life in an institution. Today I can take a look back and easily see that those profound, seemingly mortal wounds have become shiny, pale scars I will always carry with me. I actually forget about them now unless the light hits them just right.

I can see that there is a lot of life left to live. I am excited to see where this beautiful boy takes me next.

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Saturday, March 03, 2007


Erik Quote of the Day: "Come on, dude!"

The above photo was taken at my parents' house. Apparently, there was a box of tissue left too close to his porta-crib during his nap, which we all found quite amusing. My father calls this photo "The Kleenex Tester."

I am happy to report that flying food into Erik's mouth like an airplane, something I swore long ago I would never do, worked like an absolute charm this week. He has tried fish, chicken, broccoli, and beans in the past three days and seems to be willing to eat more vegetables on his own now. Brian and I are very pleased. He seems to be growing so quickly, and we want him to take in more than cookies and crackers. Many people comment on how tall he is getting. He seems to have my long legs, but, unfortunately, this means he will also likely be as clumsy!

We are seeing more and more typical 2-year-old behavior in Erik. He readily expresses his feelings now. He doesn't like preparing for bedtime, and if I mention words like "pajamas," he is suddenly mysteriously missing. One night I was following him down the hall and mentioned this particular word. He was straddling a ride-on truck toy, looked back at me as I approached, decided he couldn't outrun me on wheels, and bailed off, sprinting down the hall. It looked like a miniature episode of Cops.
Bev came for her first home visit in weeks and was genuinely thrilled at his progress in language and motor skills. He turned on the charm and made her giggle. He is still quite passive in some areas. For example, she asked me what he did when he was hungry. Erik has never once told me he is hungry. However, I am forcing him to walk to the bathroom to brush his teeth/wash or to the car when we leave now instead of carrying him, even if he is throwing a fit doing it. He is becoming less and less passive as time goes on. He has made great strides in this area. His IFSP is next Tuesday.

Friday, March 02, 2007


It's only a little after noon, and I'm exhausted. I have been fighting a sinus infection for three weeks now, and I suspect the poor quality of my sleep is slowly killing me. I refuse to take antibiotics unless I am seriously ill, as my immune system is strong and they throw off my body chemistry. I just hope I feel better soon.

Brian, Erik, and I went to the ophthalmologist this morning bright and early to have Erik's eyes dilated and checked. Of course, they looked completely perfect on exam, except for the prominent epicanthal folds so common in syndromes like ours. This extra skin sometimes interferes with focusing on something in front of his nose, but other than that, he's golden. The main difficulty we have is simply poor muscle tone, which does affect his ability to focus on objects to a minor degree at this point. We return to the ophthalmologist in six to twelve months. The ophthlamologist found it humorous that I am one of the people who transcribes his reports and correspondence. He said he would dictate our family a letter, and I could take it home and type it for myself. Actually, he found this a lot funnier than I did. We thought he was slightly annoying but seemed generally fairly competent. He seemed to know much less about WS than I had hoped. For instance, he asked why I thought Erik had poor muscle tone and dismissed our concerns about Erik's depth perception, a common problem in WS. Many physicians quickly dismiss our concerns about problems common with WS that Erik seems to clearly demonstrate. We mentioned his difficulty negotiating stairs, and he said it was because Erik wore leg braces. Aggravating!

The next step will be an echocardiogram. This is something I have been dreading but wish to put behind us this year. This will tell us if the slight narrowing in one of his large arteries has worsened or if anything else has shown itself in the last year. These scans are seriously the scariest things I have ever experienced. Ever. I am also not a huge fan of putting my baby under sedation, especially with possible cardiovascular problems. This will likely take place in the next three months. It is my hope that we can avoid cardiovascular surgery completely. So far, so good!

After the eye doctor today, Erik and I headed to the boonies for hippotherapy. He saw his horse through the observation window and yelled, "Go, Foxy!" This made one of the volunteers laugh. He did well, although he was as tired as I am, and he had a very good workout atop Foxy Horse and in the therapy room afterwards. I happened upon a very intriguing salad dressing recipe in an ancient Oprah magazine while I waited for Erik. I'll post it if it's any good.