Erik Quinn: The Heart of a Family: Euphoria

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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Blogger Julie said...

Your words move me so much. I am so proud of you. Hopefully we will be able to attend the next convention and you and Laura will be there to hold my hand.

6:33 PM  
Anonymous Auntie Dee~ta said...

WOW... I just got goosebumps listening and watching Jonathan Mooney! I just wanted to stand and yell preach it brother like I was at some church revival!! He spoke some powerful stuff and I think our nation truly needs to hear his message!!

And you Nance... no longer a first timer and a little bit seasoned! Thank you from the bottom of my heart in sharing your experiences, thoughts and feelings with us all! Truly, you have given us all a wonderful gift!

Always remember that Brad and I are here for you all and that we think that Brian and you are awesome parents and we love Erik like one of our own boys!


7:04 AM  
Blogger jbgrinch said...

thankyou for the wonderful posts about the conference. I hope that erik had a good time there too. I can just imagine what it must feel like to be with so many people in the same situation. The support of others is just the best feeling. Again thankyou for letting us have a look

7:53 AM  
Blogger Tes said...

just wanted you to know that i really appreicate you sharing your first timer experience. i want to hold julie's, yours and laura when i finally get the chance!
Big hug

9:08 AM  
Blogger Aspen said...

I LOVE LOVE LOVED watching the video clip. I will have to look him up and research more of his topics. Thanks for sharing. And you have officially survived! I am so proud of you. Perhaps you can hold my hand as I hope to be a "first timer" next year.

10:55 AM  

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