Erik Quinn: The Heart of a Family: First Timers Day

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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Blogger Julie said...

You right with such depth and emotion that I feel like I was there with you. When I went to the conference in September I had some of the same thoughts and feelings.

7:46 PM  
Blogger Nicole said...

Thank you for writing these descriptions Nancy and sharing this experience! You are an incredibly gifted writer and I always feel like I am right there with you. I can't wait for more.

I too am a bit of a "nerd" and love research articles on WS. I had a little fun with our GI doc a few months ago when he referenced an article from the New England Journal of Medicine on WS and I was able to cite specific examples from it for him. Totally obnoxious, but fun!

Anyway, thanks for being you, open and honest as always!

12:21 PM  
Blogger Tara said...

Thank you so much for sharing all of this. I feel like I was there. Hoping to go to the next one-I'd love to meet all of my blog buddies in person :)

6:35 AM  
Blogger LZ Blogger said...

Nancy ~ Moving! Truly!... "yet contribute to the wonderful little person he has turned out to be." ~ jb///

2:09 PM  
Blogger Michelle said...

We attended a Ds convention I think the same weekend you were at your convention. It was our first time attending as well and I could identify with some of your emotions being a "first timer." I'm so glad we went - we were able to meet a lot of other families that I "knew" through blogging and that was wonderful; we got a lot of information from vendors and the workshops too.

8:14 PM  
Blogger Lisa said...

thank you ;) xoxo

9:02 PM  

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