Erik Quinn: The Heart of a Family: Sweet and Sour

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.

Precious.

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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13 Comments:

Blogger Tara said...

Wow, Nancy. I have yet to experience speaking with any adults with williams syndrome. My heart aches so often with Payton (I keep thinking it's going to get better, but just seeing her gaze off and not able to answer what I consider simple questions for her age just breaks my heart). Anyways, hearing adults speak about how others treat them would no doubt bring me to my knees. I don't understand how people can be so mean - asking "You're one of THEM!" Unbelievable. Thank you for sharing all of this.

1:12 PM  
Anonymous One Proud Auntie Dee~ta said...

Thank-you for sharing so much about the convention and a BIG thank-you for sharing so much of your thoughts and feelings!

Perhaps it was good that we could not make the trip... I would of looooved to have shared a thing or two with the hotel guest! Then we would of joined you for a lemonade at The Bird... that is what Brogan calls it!

I LOVE ya girl and give that sweet nephew of mine a BIG Auntie HUG!

I think it is time for us all to get together... I need my Erik fix! :)

2:57 PM  
Blogger Julie said...

Nancy,

I am absolutely sobbing as I read your post. It touched me when you spoke of the adult that said you name and gave you a hug at the end of the week. It is so odd that as I was reading it I thought about a friend I had made at my last job who was gay and then in the next line you said about the adult who read prayers and concerns at his church and his feelings on this topic. I have thought the same thing about her. If anyone I know could understand feeling different she would. I really appreciate you writing in such detail. It is as if I was there.

Julie

6:59 PM  
Blogger Katie said...

Havnt commented in a while as everyone else manages to say what i am thinking anyway. Wish i could have been at the convention and with your updates its easy to feel that i was!
xxoo

9:34 PM  
Blogger Believer 1964 said...

This post is filled to the brim with emotion.

As usual, you take us along, and I was equally irritated with those parents poking around and crossing boundaries.

This conference was a life-changing experience for your family. Thank you for sharing it with us.

4:45 AM  
Blogger Every minute counts.... said...

Thank you for sharing your experience into this very ineteresting but hard journey. I still can put myself in your shoes with some of what you describe when I went to my first and so far only convention. I love being able to relive those emotions, even though some of them are hard, there are many good feelings too.

Noel

6:16 AM  
Blogger Heather said...

just want to let you know that I am reading along! :)

2:37 PM  
Blogger Penny said...

Sweet and Sour........Very appropriate. That'sexactly how I felt at my first Convention 2 years ago. I did not attend this one due to the distance, but you really hit the emotions right on.

I hope you are able to process them well and be at peace with them. it does take a while. I just went to a Regional Gathering this weekend with 31 children/adults and it still gets to me. I still walk away from them feeling very alone.

Keep the Faith and know that you are not alone

5:21 PM  
Blogger Laura said...

Hmmm, I could probably guess who those parents are......
One of the best things I did the whole convention (besides hanging with you at the dinner party) was spending time with the Dream Team. They have the most beautiful souls.

8:30 AM  
Anonymous Auntie Dee~ta said...

Not that I have not been enjoying your writing... and yes, there is a BUT... can you share some photos of the convention??? Perhaps we just miss you all and need to see some photos of all your sweet faces!!! :)

Love ya!!!
Dawnita

8:57 AM  
Blogger Nancy said...

Hey, auntie, keep checking. I am doing a slide show but will post it last so I can optimally torture you for days.

Miss you ;-)

11:47 AM  
Anonymous Auntie Dee~ta said...

Alright... you wanna play that way huh? heeheehee

Waiting in full on pain... torture it is just plain torture!!!

Love ya!!!

12:56 PM  
Blogger Aspen said...

Now here is my burst of tears in the middle of my office. Our sons future...so many fears so many concerns. Too much for me to bear at the moment.

9:03 AM  

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