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.