Break your heart, steal your crown
So I started out for God knows where
But I guess Ill know when I get there
-- "Learning to Fly" Tom Petty
It's only just after lunch, but I had to post this very minute.
When we filled out the paperwork for the convention, I checked the box stating that we did not want Erik to participate in any research at the event. I find myself being perhaps a bit overprotective in this regard. I admit my own personal issues come into play here. Who wants their child to be a guinea pig?
The phone rang shortly after I returned home from a shopping outing today, and a pleasant-sounding woman on the other end asked if I was Erik's mother. She identified herself as Carolyn Mervis from the University of Louisville, someone who is quite involved in WS research at the present time. This was the last person I expected to call the house. I immediately sounded like a teenage girl who had just been asked to senior prom by the football quarterback. My excitement actually completely snuck up on me. I said, "Well, hi, Dr. Mervis!" Apparently, there was not much on our application that was not garbled by the person who processed it, including my name, e-mail address, my husband's name, and, most importantly, the fact I originally was completely against participating in any studies while we are in California. In fact, it seemed to be a miracle Dr. Mervis found our family at all.
Dr. Mervis told me she has seen approximately 500 people with Williams syndrome over the years. She studies language development, cognitive development, the relations between cognition and language, and genotype-phenotype relations involving cognition or language in individuals with mental retardation (mostly WS and Down syndrome) and individuals with normal development. She seemed excited to hear that Erik speaks as well as he does. After admitting my initial hesitation, I agreed to enroll Erik in a brief research study at the convention. She even offered to look at a copy of his IEP and translate it into what it might mean in terms of WS.
I talked to her for almost 30 minutes. We agreed to meet two mornings during the convention. I expressed my fears about attending this event for the first time, and she said something that was horribly ominous and profoundly comforting at the same time. I didn't tell her why I was nervous, but it turned out that wasn't necessary at all. She knew exactly what to say, anyway.
She said, "When you see the adults, don't be alarmed. There is great variability in Williams syndrome, and I assure you that many people with WS are quite successful. However, those people are not as visible as the others."
To me, this reinforces the fact I will possibly be shocked by what I see. While this in itself scares me to death, my feelings were instantly validated and followed up with a giant, warm helping of hope. Even the negative has a positive in this case, if that makes sense. I heard myself telling her that if anybody could make it with this disability, Erik could.
And I meant it.