Erik Quinn: The Heart of a Family: July 2008

Wednesday, July 30, 2008


Saturday was the last full day of the convention. By now, I was familiar with many of the faces I saw in the halls. The woman who was to adopt what she was assured by authorities was a healthy baby overseas, only to arrive and discover the infant could not hold her head up like other babies. The man whose wife left him one day with their children, including a 1-year-old child with special needs, to fend for themselves, never to return. The women who abandoned promising and exciting careers to care for their children with WS, some of whom even returned to school to become experts in the field of education. The parents with shattered marriages who found themselves starting over. The parents of children with incredible talent but the inability to determine left from right. I subconsciously collected all of their bittersweet stories in my memory.

I spotted many of the people I have come to know from Oregon. I smiled a lot in the hallways of the hotel each day because of them. During the week I was even pleasantly surprised to discover a few quiet readers of this blog I didn't even realize existed, most of whom really found me or whispered introductions to Brian. Another favorite moment of mine that lightened the mood was the day I met Kristine and her husband Rob for the first time. I stood in a Del Taco ordering a bean burrito between sessions when Kristine spotted our convention name tags and asked where we were from. We introduced ourselves, and she quickly put two and two together, enthusiastically asking if I was Erik's mom. Her voice actually went up an octave or two. She knew everything about us, even inquiring whether Erik's foul-smelling stuffed toy, Stinky Dog, was along on the trip (Stinky spent his days being manhandled by hotel maids, who placed him back on our neatly-made bed like a odoriferous pillow mint). I have to giggle when I think about this because she made me feel like I was standing on the Hollywood red carpet, not in a fast food restaurant waiting for a greasy paper bag containing our lunch. And, no, Kristine, you didn't scare me or seem like a dangerous stalker. Actually, I needed that moment that day more than you know. Thank you.

We attended our last keynote session Saturday morning. Jonathan Mooney was an attractive young man who paced the front of the room and transferred a coffee cup from one hand to the other the entire time he spoke. I found his borderline boisterous style a bit like being offered a shot of tequila first thing in the morning but was quickly drawn into his stories. He grew up with a learning disability and was repeatedly told by adults that he was worthless and would end up flipping burgers or being incarcerated. They were wrong. Very wrong. He ended up graduating from Brown University. His mother ended up being quite the warrior, too.

Again, I was introduced to the concept that disabilities are assets. Gifts. How we should cease trying to fix them and adapt our children's immediate environment to suit their needs, especially in the classroom. How a woman with Down syndrome that Jonathan Mooney knew told him that she was now part of a group that could be classified as an endangered species because of prenatal genetic testing. I swallowed hard hearing this, as I remember declining the triple screen for genetic syndromes. I didn't want to know or be required to make any decisions that I couldn't handle. Ironically, WS would not have shown itself on this test, anyway. Erik may be becoming part of an endangered species as well. I don't know how to feel about that.

At this point, I was thoroughly confused how to feel about Williams syndrome. Day to day at home, I don't spend hours thinking about how I feel about it because it would simply kill me inside. I wouldn't wish this upon my worst enemy, although I know I'm lucky to have a happy, relatively healthy son and thank God for him daily. The world is a better place because of him. One of the the many things WS has stolen from me is the fact I am unable to form a healthy hatred of it. I am unable to even fantasize about it not being present in my son's little body. Why? Time after time I have heard how this disability is secondary to the person, and, while I completely agree with this statement, it remains an entity that is so thoroughly entwined in the person Erik is that, quite frankly, he wouldn't be the boy we know anymore without it. In the end, I would feel guilty for wishing for such a thing, so I do not go there anymore. Instead, I am encouraged to foster "WS pride" and try to accept this birth defect as a gift to the world.

I admit that I have more than a little trouble with that.

After the Mooney session, my mother and I looked at each other, sighed, and laughed. This week was proving to be utterly exhausting. I began to notice after each class or session that every muscle fiber in my body was completely rigid, and I would have to unlock myself in order to even stand up. I was actually becoming a bit sore.

From there, I attended more sessions on transitioning to kindergarten, problems with behavior, and fundraising. The WSA had announced that the sibling video that was shown at the beginning of the convention had sparked the request for a group of parents with "only children." Brian and I were enthusiastic about attending, but by the afternoon I was frightened to hear what the other parents had to say. I was also so exhausted I feared I would fall apart. We met a few other parents for this improptu meeting in front of the bar in the lobby. Thankfully, they were all kind people who were easy to talk to and didn't automatically advise us to have 10 more children. Thank God. I feel judged enough. One gentleman had a daughter in her 20s and was able to give us an overview of what life was like for their family over two decades. It was difficult to hear his stories of trial and error regarding simply attempting to create an independent life for their daughter. I came away from this session knowing there will likely be many little failures in the future helping Erik accomplish what others take for granted but that it is necessary to be an encouraging parent who can seek out options and resources. That way there would be successes to celebrate, too.

After we finished, we headed upstairs to meet my parents and get ourselves gussied up for the banquet. It had been a long, LONG day, and I fought the urge to collapse in front of Fox News in my pajamas.

The ballroom was packed for the pirate-themed banquet. People sat around tables decorated with treasure chests brimming with plastic coins and jewels, which Erik found very entertaining. Captain Jack Sparrow, a Johnny Depp look-a-like wearing thick smudges of black eyeliner entertained the children and posed for pictures. I thought he looked pretty darn good but chortled loudly when the woman sitting next to us said she thought he looked like he had been hit by a milk truck. It didn't matter, as the kids adored him and were then entertained by a lively sword fight toward the front of the gigantic room. Brian brought me a cocktail, and I made myself comfortable at our table next to my friend Laura and her children. Erik was thrilled about Michaela joining us for dinner.

Everything about the banquet was fabulous. I can't honestly remember what it was I ate, being in a euphoric, exhausted trance at this point, knowing I had made it through the week. There was an awards ceremony for those who had made major contributions to the WSA, including Gloria Lenhoff's father Howard. I was thrilled to hear him speak in person. One of the grandmothers I know from Oregon came over to our table to say goodbye. I automatically thrust my hand up in the hair, and she high-fived me on her approach. We exchanged hugs and we said our goodbyes. Erik ate at least two pieces of cake from various table mates after dinner, and the giant panels of the ballroom's articulated wall eventually slid open to reveal a dance floor, DJ, and colorful lights playing all over the room. My parents made their exit with Erik to retire to our room until our return. It took all of the energy I had to dance a couple of songs and snap a few photos before I was done. And I was really done.

It was official. I was no longer a "first timer."

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Sunday, July 27, 2008

Sweet and Sour

Thursday and Friday mornings of the convention Brian and I took Erik upstairs to a suite in the hotel to participate in research conducted by Dr. Mervis for the University of Louisville. Two of her assistants welcomed us, and Erik burst into song, happily exclaiming, "I like to move it, move it!" They laughed and sang along, easing any anxiety about leaving him there. While I expected the study to only take an hour of his time over both mornings, they apparently kept him for quite some time before they returned him downstairs to join the other children.

One of my favorite moments of the entire convention occurred Friday morning. As we walked to the ballroom for breakfast and opening remarks, I spotted Gloria Lenhoff, a very successful opera singer with Williams syndrome. I recently finished her parents' book The Strangest Song and saw her on Medical Incredible. This tiny person with the robust voice was quietly eating her breakfast. She looked up from her food, and our eyes met.

I smiled.

She smiled back.

As Brian and I walked past her table, I was horrified to discover my whole torso was turning so I could stare and grin at her like a complete doof. In my enthusiasm, I had apparently forgotten to behave in a civilized manner. She took it in stride, though, and waved at me, which made me laugh out loud. Her smile widened, and I waved back like a long lost friend, feeling as if I could die happy right then and there on the glossy hotel lobby floor. After this gem of a moment had passed, I turned to Brian and explained what had happened. We had a good laugh. I told him that although she had no earthly idea who the hell I was, she certainly acted as if she were just as excited to see me.


Friday my mother and I attended a session titled "Roundtable Discussions with Adults with Williams Syndrome." This was a giant leap for me, as I have only met two adults with WS so far and never had a substantial conversation with either of them, as I fled before that could take place. We arrived slightly late and discovered a crowded room where many discussions were already underway, and we ended up being seated at different tables.

Unfortunately, two of the parents at my table were the only people I had encountered all week who were pathologically irritating and I attempted to avoid at all costs. During a couple other sessions, they asked what I considered to be an excessive amount of questions and greedily consumed the limited amount of time available to the other attendees. I sighed and tried to adjust my deteriorating attitude.

Two adults with WS then sat down at our table and spoke with us for a predetermined amount of time. When their time was up and they were instructed to switch tables, another pair would take their places so we would experience a wide variety of personalities and abilities. By the time the third pair of adults arrived, I was completely annoyed by one of my least favorite parents asking a series of what I considered to be deeply personal and condescending questions. I began picking my cuticles until they stung and threatened to bleed. I was uncomfortable and actually considered getting up quietly to leave. Instead, I opted to shut down and became silent, planning the rest of my afternoon in my head. I looked down at my notebook and attempted to reduce my spiking blood pressure before I stabbed someone in the eye socket with the ballpoint of my WSA pen.

It was then I heard a voice addressing me by name. I looked up.

"Hi, Nancy! How's it going today?"

Surprised, I found myself gazing into the face of the adult with WS who had joined our table. He was in his 40s with closely-cropped, white hair. I recognized him from one of the first videos on WS I had ever watched. He was featured in a special that Scientific American Frontiers had done with Alan Alda as the host. Any disgust I had regarding my typical table mates instantly evaporated when I realized that he quite possibly had detected my discomfort, read my name tag, and drew me right into the discussion. I was completely and totally disarmed. As I began to gush about recognizing him, he seemed thrilled. Later in the week my family would cross paths with him and exchange pleasantries. On the last day, he would approach my table where I was having lunch to say goodbye, opting to gently hug me after I stuck out my hand in a gesture of friendship. As I felt my cheek rest on his shoulder and his arms encircle me, I was amazed at the feeling of peace and comfort that washed over me. I will never forget that.

The rest of the conversations we had with the adults during our session seemed easy, as they were charming, although my heart threatened to shatter for them at the same time as I learned the specifics of their struggles. For example, a hotel guest apparently confronted one adult with WS in the bathroom and said, "You're one of THEM, aren't you? Get away from me!" Life was sometimes very difficult for each of them. A few lived semi-independently, although I was disappointed to learn the individuals I spoke with were unable to cook for themselves. Some shook badly and had trouble with fine motor skills in general. Only one drove an automobile. Most had given intimate relationships a shot but seemed most interested in finding quality friendships instead. None of them were married. One of my favorite young men explained that he read the prayers and concerns of his church congregation aloud during Sunday services. He spontaneously told us that their church also held same-sex marriage ceremonies. While I cringed at this controversial subject being offered to a table of parents, some of whom lacked any manners to begin with, he quickly went on to say that he would never judge anyone in this situation because he could identify the struggle in them and knew first hand what it was like to really struggle. I bit my lip and felt my eyes moisten.

After our session concluded, I decided I was finished for the day. Brian and I left Erik with my parents and escaped through the glass doors of the hotel into the warm afternoon. We walked under a canopy of palm trees to a nearby Red Robin, where I ordered the first of two Lynchburg lemonades. As the sweet mixed with the sour on my tongue, I burst into tears in the middle of the restaurant without any warning whatsoever. To my complete horror, I went into a sloppy sob for a couple of minutes before I was able to turn my emotions completely off again. I then picked up my pen and began helping Brian fill out another lengthy questionnaire about Erik's language and cognition for Dr. Mervis's research.

I had not yet allowed myself a good cry, and I certainly was not about to start now.

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Monday, July 21, 2008

Getting Schooled

Did you ever know that you're my hero,
and ev'rything I would like to be?
I can fly higher than an eagle,
'cause you are the wind beneath my wings.

-- "Wind Beneath My Wings" (Bette Midler)

The week at the convention was packed with educational sessions, keynote speakers, and panels. I'll start with Thursday and Friday.

Thursday we hit the ground running after our continental breakfast. The only moment I had close to resembling an anxiety attack all week was during the first session I attended entitled "Moms Only." My slight tardiness from my difficulty locating the session forced me to sit in a chair towards the front in the long, crowded room, which is a nightmare in itself for me. When one of the women on the panel asked that the doors in the back be closed, I suddenly felt like I was trapped in a coal mine. Being trapped in a closed space with hundreds of other women isn't my idea of a good time. This is one reason you will not find me in a screeching audience of an all-male review with dollar bills tucked in my brassiere. I find it way too intense in any setting. The facilitator immediately had us place both feet on the floor for stability and close our eyes while we listened to a soothing song she played on a boombox in front of a microphone to focus on ourselves and why we were there. That helped. The women who sat on each side of me were mothers of teenagers with WS, and I was only able to briefly speak with them during our short time together but liked them both immediately. During the session, a small panel of women related their personal stories, some of which ripped my heart into tiny pieces but gave me hope that even the shards of broken dreams we have can be reassembled into something new and beautiful. At the end of the session, we were instructed to close our eyes again. The song "Wind Beneath My Wings" broke the silence, and I easily recognized the singer as Meghan Finn, a young adult with WS who has been featured on 60 Minutes and The Montel Williams Show. Her mother had spoken to us moments before. Meghan had quietly walked to the front of the room while we had our eyes closed and sung for us all without any fanfare or even an introduction. There wasn't a dry eye in the house. In fact, the sound of poorly-disguised snot sniffling threatened to overtake the song. It was a beautiful moment, but I couldn't wait to claw my way out of that room and decompress. I made a note to myself to add a package of tissues to the bag I carried.

Mike Rayburn performed for us at the next session in the ballroom, where I met Brian and my parents. He is an incredible guitar player and comedian who absolutely blew all of our minds. For some reason, I really didn't want to like the guy (my frame of mind, perhaps), but my face absolutely ached from smiling after his performance. I enjoyed hearing my parents giggling, too. He sung the words from such gems as Green Eggs and Ham while simultaneously strumming songs by Led Zeppelin and AC/DC, making them melt amazingly beautifully into each other and causing the audience to erupt in laughter. His point was that we need to approach life with an open mind and think outside the box. His performance was titled "What If? and Why Not?" Why not, indeed?

Friday we heard Richard Villa speak. He is a former teacher, special educator, and special education coordinator who spoke about the importance of collaboration and inclusion. He explained why special education as it was created in the mid-1970s failed to accomplish what it was created to achieve. He seemed to evoke a combination of a cerebral Rodney Dangerfield and a character from the Simpsons I never could quite put my finger on at the same time. He gently and completely opened my mind in terms of inclusion. I tend to bristle at the word, as it seems to be all the politically correct rage at the moment and I grew up in an era when special education was big. However, he cited many compelling facts and anecdotes that gave me food for thought. He showed us the video I have attached to this post, and as I watched it, I felt my gut knot up. Powerful stuff.

My rule for getting through raising Erik for the last three and a half years has been "whatever works." No matter what it looks like, what it may be called, or what is said to me by experts, other parents, or well-meaning but irritating strangers. After all, I am a true Erik expert. This is the precise reason Erik was tightly wrapped like a Taco Bell Value Menu item in a fleece blanket for nine months. A few people were absolutely horrified by this, especially when they saw me roll him in order to get the blanket tight (you could bounce a quarter off his body when I was finished), but it kept his acid reflux under control and he seemed more than content this way, even sleeping through the night. I will continue to seek out whatever works but am now convinced that there are even more options for Erik in his education and his life than I dreamed there could be. I may have to fight for or even create these options myself within the framework of the law, but anything is possible. I came away with proof that, generally speaking, everybody benefits from inclusion. Even typical children. In the end, though, we will simply do what works for Erik. No matter what label it has. One of my dreams for him is that he will be successful in a classroom with typical peers. It will be a long, difficult road, but I know it is at least possible.

Whatever works.

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Sunday, July 20, 2008

The Real Deal

Thursday morning brought the official start of the convention. The number of people sharing the hotel and coagulating in happy groups in the lobby grew significantly.

We waited to board the elevator with an attractive, typical-appearing family, and my heart split down the middle as I made the assumption they were on vacation. Perhaps on their way down the street to Disneyland. I felt a small twinge of jealously and anger in my gut. Oh to have a typical child. I very rarely feel sorry for myself anymore, but I allowed myself the indulgence of the feeling for a few seconds. Erik stood nose-to-nose with their little girl and repeatedly said hello, flashing a couple hopeful smiles at her. As we entered the elevator and stood side by side with this family, the doors slid shut, the floor shuddered with the movement of the hidden mechanics of the thing, and there were a couple subtle noises that elevators are generally known to make.

The girl let out an ear-piercing scream and covered her ears tightly in alarm.

My internal Willi-Radar apparently failed to alert me to the presence of fellow parents of a child with WS, and I was completely surprised. Brian and I looked at the other couple and smiled knowingly, feeling for them because this horrible phenomenon was quite familiar to us all. Erik did not break his gaze towards the little girl but very calmly covered his own ears to escape the noise. We exchanged very few words at all. There was no need. These people were not headed to Disneyland for a cacophonous jaunt on Mr. Toad's Wild Ride. Not this year, anyway.

The doors opened in the lobby, and they were gone.

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Thursday, July 17, 2008

First Timers Day

Wednesday morning was set aside for "first timers" only before the official start of the convention. I found myself extremely grateful for this. Instead of being flung into a crowd of 1200 other people upon our arrival, we newbies had a day of our own to adjust to the extremely strange feeling of our environment and meet other parents. We all received "first timer" ribbons to affix to our name badges. It was a long, intense day, but the kind volunteers who were pros at attending WS conventions offered me friendly winks and knowing smiles, telling me the next day would be wonderful but promised to add a new level of insanity when the next wave of people descended upon the hotel and surrounding neighborhood.

We woke up amazingly rested on Wednesday. As I showered and got dressed, my stomach was virtually butterfly-free. This was due to the fact I had spotted my friend Laura, a fellow blogger, crossing the lobby the night before. I found myself pointing at her and felt a smile spread across my face. She quickly smiled back and approached us for introductions and hugs. Although we know volumes about each other from our relationship on line, it was the first time we had actually met. Surprisingly, this tiny detail made no difference whatsoever. We met her son Aaron and daughter Michaela. Erik was instantly pathologically twitterpated with the beautiful Micheala and would talk about her for the rest of the week. Laura reminded us that she would be at the daycare check in table the next day, so any anxiety I had about facing the crowd downstairs the next day simply vanished.

I dressed Erik in the fluorescent, lime-green WSA T-shirt that he would wear all week for daycare, and he eventually let us hang a name badge around his neck, although he was less than happy about it. My parents met us at our room, and we all made our way downstairs. We greeted Laura and checked Erik in at daycare, where he was put into a room with other children, some of whom I recognized, and we headed to the grand ballroom across the hotel. We found a beautiful selection of fruit, pastries, and lovely, strong coffee displayed on long tables outside the ballroom. After finishing a light breakfast as we stood around and chatted, we entered the room and found a row of chairs to sit in and wait for things to begin. I looked at my mother and took a deep breath. I then put my fists in the air as if I were about to plunge downhill on a roller coaster, and said, "Woo hoo! Bring it on!" I laughed because I was actually scared as hell.

We were welcomed to the event and immediately shown a beautiful video featuring the siblings of those with WS. My heart seemed to swell a bit as I heard each story from a variety of families in different settings, but I found myself feeling slightly depressed, too. Being in an emotionally vulnerable and raw state to begin with, I suppose that this topic took me a bit by surprise. I reminded myself that although Erik has doesn't have a brother or a sister, he has a gigantic fan club, including friends and family members we make every effort to see regularly. I had no idea at the time, but there were a handful of other parents in the crowd feeling the same mixed emotions. Even feeling worse than I did. I would discover this later, and positive things would come from it.

The rest of the day was spent in lectures regarding Williams syndrome creating a strange and wonderful culture of its own, the sometimes deadly medical problems that often accompany the syndrome, and various therapies. The term "WS Pride" even emerged, making me smile. A panel of parents of children with WS spoke about their children and experiences, and I identified with them all on some level. We heard Drs. Levine, Morris, Mervis, and Pober speak, which was beyond thrilling to a hopeless nerd like me. I have never been so thankful to be a medical transcriptionist. I could easily interpret the jargon and maps of the brain. I remember looking at a illustration of chromosome number seven on the giant screen in front of us and seeing the gaping hole where those 25 genes should be in my son but simply failed to show up, cruelly determining his fate despite all of the hard work I put into having a healthy pregnancy and child. I thought of how very strange it was that I felt so detached and clinical while I listened to these lectures and viewed graphs, charts, and scans related to cognitive impairment, behavior, and brain abnormalities. At times I actually had to remind myself why I was sitting in that chair. In that hotel. In that city. Surrounded by those people with eyes sometimes as wide as mine. That I was listening to the most personal of all medical lectures ever and studying the very spot where I feel things went horribly wrong when Erik came to be and would cause his body and brain not to function normally yet contribute to the wonderful little person he has turned out to be. The birth defect that I have grown to hate and love simultaneously. Even knowing this, I felt cool, calm, and collected, as if I were floating above it all having a near death experience in an operating room sporting a bloody, open incision in my abdomen. Knowing myself as well as I do, I knew that it would all catch up with me in a hot wave of nastiness later but seemed to have subconsciously gone to the fuse box in my brain earlier and flipped my emotional switches off for the time being. Either that, or I had blown a fuse somewhere and would feel nothing ever again. At that time, it didn't matter. I was fully aware that it was the mechanism I would use to survive the week without slumping into a shuddering, sobbing heap of a woman.

And it worked. At least for the next few days.

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Wednesday, July 16, 2008


Tuesday the three of us boarded a small plane, and I watched the desert fall away below us as the hub of the propeller on the engine outside our oval-shaped window spun, drilling into the blue sky. My stomach lurched as we lifted above banks of thin clouds, and my eyes misted over with a quick shot of emotion before I snapped back into my motherly duties and began rummaging through my new bag for Erik's DVDs and a hidden stash of frosted animal crackers. Erik seemed surprised as the plane hit the first bit of turbulence. His thick hand went into a serious kung fu grip over mine before he relaxed, settled into his seat, and began enjoying his very first flight on an airplane.

Just over two hours later, we found ourselves descending into the chaos of LAX. We collected our other oversized carry on off a cart at the bottom of the stairs outside the airplane, and I struck up a conversation with a man wearing a crisp pilot's uniform, realizing he had gone to grade school with me. He said he thought he had spotted me earlier but wasn't certain. When he asked what we were doing in Los Angeles, I found myself manufacturing a small white lie. I reported we were there to meet my parents on vacation. I just wasn't ready to talk about it yet and wasn't sure how I would go about doing it, anyway. We exchanged superficial smiles and I said goodbye as we made our way up the metal ramp like cattle into the terminal.

My parents waited inside and grinned when they saw us. Erik was absolutely thrilled and kept cheerfully repeating "California!" We made our way through the pale yellow halls of the aging airport that has changed very little since my childhood, and I tried to ignore the less than subtle stench of the place that seemed to waft into my nostrils from every surface. We then stood like Pavlov dogs in front of the large, circular conveyor system and watched a few bags slide down a ramp out of the ceiling and plop down onto it. Finally, the new bags ceased their flow, and we quietly looked down at the belt traveling by, seeing the same couple of pieces of luggage slumped over in an endless loop on the belt, their owners likely miles away, strapped on another plane headed to a tropical destination with no clean underwear whatsoever.

Brian seemed to know exactly where to go, disappearing behind the glass doors of a nearby office. Erik and I waited with my parents. He soon returned, looking mildly disgusted. The good news was that airport personnel assured Brian that they knew where our two bulging suitcases were. The bad news was that they had taken a detour to Portland, Oregon. He was assured they would arrive later and be delivered to our hotel. I checked my carry on bag and saw three diapers, our prescription medicine, a tube of lipstick, and two Elmo DVDs. Brian's carry on contained all of Erik's clothing.

My parents led us out into the equally odoriferous parking garage, and we loaded into their familiar green Subaru. From there, we headed down the busy freeway to the Hyatt Regency in Garden Grove. I heard myself chattering the way I always do when I'm nervous and around people I'm comfortable with. My respiratory system slowly adjusted to the heavy, smog-filled air filling it as we rocketed down the road. Soon my father found Garden Grove. We drove past the gates of Disneyland, which seemed much smaller to me than it used to, and the collection of massive hotels that formed their own neighborhood nearby. The Hyatt Regency Orange County was a gorgeous, ecru-colored slab studded with rectangular windows that reflected the sky and clouds like mirrors. There were also panes of clear glass fortified with an exoskeleton of metal housing a cavernous lobby and restaurants. Our car pulled up in front of the building, and we unloaded what we had left from our short journey. I wondered aloud if we would recognize anybody with the familiar features of WS.

I didn't have to wonder long. We entered the building and found ourselves underneath tall, tropical trees in a gorgeous, naturally-lit lobby flanked by a bar on one side and a restaurant on the other. All of the seating was out in the open. I looked up and saw hundreds of windows of additional guest rooms over the lobby. My mother and I began quietly searching the faces of the people around us while we held onto Erik and Brian and my father checked us in.

She softly said, "Look at the man behind us."

I replied, "There's another one. This is so strange."

My heart sped up a little bit, and I felt a strange sense of excitement.

After we had checked in, we made our way out of the tiled lobby to a luxuriously-carpeted hallway containing elevators. We walked by an open area by the front windows that featured soft, rounded furniture and low tables. A group of young people with Williams syndrome sat there and would all week long, greeting the passersby and enjoying each others' company.

Suddenly I heard a young woman's voice exclaim, "Oh, he's so CUTE!"

Erik was happily enveloped by the small group. He reached out for each of their hands like an old friend and let them make the appropriate fuss over him before we finally said goodbye and that we would see them later.

It was pretty clear they had spotted us, too.

Our room was comfortable and clean. We dropped off our things, and I called to ask for a small refrigerator to be delivered to our room. We then went back out to the car for a trip to the supermarket, where we bought the fixings for Erik's PB&J sandwiches and the items I needed to draw on a new face just in case our luggage, which contained all of my makeup, didn't arrive before the convention began in the morning.

We settled into our room and saw our parents off. They planned on commuting each day from my brother and sister-in-law's condominium and would see us again in the morning. We readied ourselves for another horrible, sob-filled night in a hotel room with Erik, but he seemed quite content and eventually fell sleep. I passed out in the rumpled clothing I traveled in, contact lenses dried to my eyeballs, and slept fitfully for a couple of hours. Just after midnight there was a knock at our door announcing the arrival of our luggage. I changed into my nightgown, got ready for bed once again, and fell asleep with Erik snuggled up against my body.

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Monday, July 14, 2008

Safe Return

I'm back from the convention, but I'm not prepared to write about it. There are simply no words at this point. It was a heart wrenching experience in many ways, but I'm so thankful I attended and would definitely do it again.

It's surprisingly difficult looking at the people around me and not seeing faces like Erik's for the first time in a week. It actually feels a little sad.

I have many photos and a notebook full of thoughts to jog my memory. I'll post my impression of the week soon.

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Monday, July 07, 2008


Courage is being scared to death - but saddling up anyway.

-- John Wayne

I guess sleeping isn't in the cards for me this morning. Sigh. Erik was lying in front of his bedroom door, putting his fabulously full lips to the space between the door and the floor, and talking loudly, which startled me out of a series of strange dreams I wasn't enjoying much, anyway. Once I put on my robe and went into his room to deposit him back in his bed, I was done sleeping. I didn't even make it to 3 a.m. I can't complain, however, as insomnia seems to be something I am leaving behind these days. I slept in yesterday until 8 a.m. I can't remember ever doing that before.

This may be the last entry in my blog until I get back. I had a fabulous day shopping yesterday and spending time with my best friends, who were wonderfully supportive and made me giggle until I was actual physical pain. I bought a new notebook to take with me if I feel compelled to "blog." We meet up with my parents at LAX Tuesday afternoon. I feel incredibly lucky they are so interested in the world of WS and how to optimally help Erik. Incredibly, shortly before they left, they bumped into some new friends at Costco, mentioned the upcoming convention to them, and were surprised to discover that this couple had a 36-year-old granddaughter with WS who only recently received her diagnosis. It's funny how things like this just "happen" at just the right time. It renewed our excitement about what is ahead for us this week. Today we will fill out the packet of paperwork Dr. Mervis sent to us for the research they will be doing on Erik and get packed. Another friend agreed to stay here, water our flowers, and care for my cat, making sure she gets her thyroid medication twice a day and doesn't throw any wild kitty parties. We are all finally healthy, and all systems are go!

Goodbye for now...

If anyone will be attending the convention and doesn't have my cell phone number, please e-mail me today, and I'll get it to you.

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Saturday, July 05, 2008


I'm feeling completely uneasy and restless before the convention. After I decided I was sick and tired of being cooped up in the house, I briefly visited a girlfriend and then drove to the restaurant down the street to play slots and sip on a diet soda poured over ice cubes and lemon slices in a giant Mason jar. After the caffeine hit my bloodstream and I won $20, I came home, more jittery than ever. I can't seem to focus on anything! I did manage to cut Erik's hair and do some laundry.

We had our Independence Day celebration here. I barbecued steaks and chicken, and my mother brought over potato salad and rhubarb custard pies. Another family friend and charter member of Erik's fan club joined us, too. The guys attempted to fix my kitchen range, which has been malfunctioning in a giant way, requiring me to turn it on and off at the fusebox each time I cook a meal. They spent hours on it. I made a pitcher of sangria with apples and white peaches, and we visited, drank, and feasted until it got dark, when we migrated out to the back porch to watch the fireworks display off the top of the nearby butte.

Erik has been excited about the fireworks for days. He remembers them from last year and seems to have lost any anxiety he had about them. He had no nap all day and was still going strong by the time they began at 10 p.m. He ran back and forth between us all and refused to sit still, springing up and down and spouting off random lyrics from some of the songs on his favorite music CDs. Because we live far enough away, the sharp cracks and whistles of the fireworks were a bit muffled, and he had no problem with noise whatsoever.

There were two things that made my heart skip a beat yesterday. Erik climbed the ladder up to his slide in the backyard with very little assistance and lots of encouragement a couple of times. He also retrieved a container of bubbles, unscrewed the cap, fished out the plastic wand, and successfully blew bubbles alone yesterday for the first time. He talked up a storm while he did it, stringing together words in new ways and causing me and my mother to look at each other in amazement. He still has a strange and hilarious Cajun accent ("Ohhhh...lookidat!"). Earlier in the day when I turned on Fox News, he got right up in my face, tilted his head adorably, and suggested, "How bout we watch Elmo instead?" The past month has been absolutely amazing. We have witnessed another giant leap in development for Erik after months of a quiet plateau. He has been great fun to watch, and I am so incredibly proud!

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Thursday, July 03, 2008

Levy Breach

I attended my support group for the third time tonight. About eight of us met at a Mexican restaurant for dinner. I tried to keep myself in check, but when it was my turn to speak, I just couldn't hold it in any longer. At first, I felt like throwing up my chimichanga, but I was honest and spoke for some time. I managed to share my true feelings with people I could reach out and touch, not a computer I could turn off if I began to feel uncomfortable. It was horribly difficult, but I did it.

And it finally happened.

I cried.

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Wednesday, July 02, 2008

Day 18

I do believe I am finally healthy!

Getting ready for the convention. More to come!

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