-- Sue Vest (Mother of Jeremy of HYN)
So the most amazing thing happened.
I woke up in so much pain I wanted to chop my throbbing noggin off, but my headache completely subsided after its brutal reign of three and a half days. I was suddenly able to clean the house and cook some appetizers for the "How's Your News" party. After I was done, I slipped on my brand new blue and yellow HYN football jersey, which somehow made it all the way from the bowels of MTV in New York to my mailbox in just three days. I primped myself until I looked fairly lifelike, and most of the people I invited showed up at our door right on cue. We sipped bubbly champagne, feasted on delicious food, and gathered around the television to watch last week's season premiere of "How's Your News." I was quite pleased to be surrounded by friends, family members, a member of my moms' group, and Erik's therapist from early intervention who is now a permanent part of our family.
And the show? I loved every second of it.
I tend to analyze everything to death, but I was instantly entranced. I didn't analyze the content or the format while I watched it at all. I immediately fell head over heels in love with the HYN interviewers. I didn't think about Williams syndrome, Down syndrome, or any neurogenetic condition. I didn't even focus on the wonderful, rare opportunity I had to gaze into the strangely familiar faces of strangers marked with the elfin features I have learned to recognize as I have studied my son's syndrome over the years. I simply found myself immediately comfortable, and I laughed loudly along with the others in the room without a second thought. It was soon clear that the show seemed a heck of a lot less focused on disabilities and more on the experience of being human. About watching for the potential bizarreness that occurs when two very different people happen to collide and communicate. I did end up hungry for more sound from the HYN band and hope to see more music in the next few episodes. Jeremy's enthusiasm sparked by meeting the drummers from various bands and the unexpected gift of a guitar that Brendan, another young man with WS, received from pro skater Ryan Sheckler left me feeling very warm and fuzzy indeed. And that Susan! Well, she's just frickin' FUNNY. I loved them all.
After the show, it was suggested that I play the 60 Minutes video titled "A Very Different Brain" about Williams syndrome, so I popped it into the DVD player. I was anxious to see it again, knowing we would recognize some of the people we met at the convention. We all had a great discussion about WS, "How's Your News," disabilities, our culture, and how far our family has come. We pointed out people we had met or read about. We laughed a lot. Some of us even cried a little.
I remember feeling confused and a little sick to my stomach when I heard the term "Williams pride" for the first time at the convention last summer. I wondered if anything so damned devastating could ever spark a sense of happiness or pride in me. Sure, it sounded good, but I was skeptical. Packing for the convention felt a little like preparing for a funeral in a sense to me. It meant I had to accept something I didn't want to and officially let go of the old hopes and dreams I had forever. Attending the seminars on WS meant shedding the soft scraps of denial I clung to for comfort. In reality, it scared the hell out of me. However, as the convention progressed, I was transformed by the entire experience. Walking through the front door of the hotel for the first time and watching the young people with WS lovingly envelop my son in their arms brought tears to my eyes. It was the most amazing, unexpected sight to see. He held each of their hands and laughed along with them, like they shared some sort of secret joke and had known each other forever. As time went on, I took a really good look at the people around me and realized we were indeed celebrating WS. In a big way. There were T-shirts for sale to prove it. I witnessed gallons of grief-heavy tears shed around me by parents a lot like me over a few days, but when they dried, there were a lot of grins. In the end, I came back a different person. My own tears finally ceased, and I came home wearing a smile.
Today was a real celebration for me. I didn't realize it, but it ended up being another milestone. I was really excited and proud to be the mother of someone who just happens to have Williams syndrome, a devastating but amazing genetic twist of fate that has brought so many wonderful people into my life and reinforced the relationships with the people who were a part of my life before the diagnosis. These are the people who sit on my couch and drink champagne with me, helping me celebrate the beauty in something that racked my whole soul with grief three years ago. These are also the people who are always with me, even if they are miles away. I certainly wouldn't want to be on this roller coaster alone, and they have willingly strapped themselves in next to me, ready for the crazy ride. Once in a while I put my arms in the air and scream loudly, sounding halfway terrified but oddly triumphant. It's exhilarating. I felt like that today.
Three years ago I thought I would never laugh again.
I couldn't have been more wrong.