The Part of My Son's Condition That's Hard to Write About

This is hard to write about.

Tonight, I walk the line.

Tomorrow, I probably will too. I might stay on one side, linger for a little while, and then I will go back to the line. Teetering ever so slightly, trying to keep my balance.

I walk the line between complete acceptance of Evan’s Williams syndrome (WS), almost to the point of celebration — and complete worry, disappointment and concern for his differences and how they will affect him throughout his life.

When Evan giggles and jumps in his carseat, peering out the window, simply thrilled to be waiting for me to bring in groceries and to see me peek out the door to see him — I celebrate his WS. I celebrate that he’s filled with joy — simple, unadulterated joy about 80 percent of the time. When he whispers “I la you” before I leave his room at night — three words we’ve worked on for over a year, I celebrate.  When the director of his preschool writes me a note, thanking me for allowing them to be Evan’s teachers because of the light he brings to their lives — I celebrate. (I also blubber like a weepy fool, but that’s another story.)

When I watch video of adults with WS lamenting how difficult their high school experiences were due to bullying, I’m concerned. When I hear an adult with WS say to a newly diagnosed child’s father, “I am so sorry to hear she has WS; it can be really hard,” I hurt. When Evan greets someone with a happy “Hi!” and then repeats it over and over and over no matter how many times the person responds, I feel a little weird inside. I feel guilt because of course I know he means well; he just wants the positive interaction, but I also know the recipient is wondering how to respond. And then I start thinking about what will happen when he’s in middle school and he greets others with no abandon.  When I listen to other children Evan’s age and I realize how far behind he is with speech and language, I can feel disappointed. I live in a little bubble sometimes, where Evan’s progress is only compared to Evan’s progress. Until it’s not anymore.

When I hear Evan singing “The Water is Wide” on the monitor and then humming the parts where I hum because I don’t know the lyrics, I feel joy. I feel pride that my son has Williams Syndrome. That he has an emotional connection to music that even I cannot comprehend. When I talk to others and educate them about WS, I enjoy talking about it; I feel pride in every detail I share.

I can be quick to say, “But don’t forget, Evan is not defined by his diagnosis. He is Evan first, and he just happens to be missing 25 or so genes out of the more than 20K we each have. It’s just a small part of what makes him Evan. ”

I just keep walking that line.

The line between celebration and worry. The line between pride and guilt.

I can say that I’m on the side of celebration far more than I’m on the other side. I feel blessed for that to be true. But the other side exists. And it can be an ugly, dark spot to step into.

That is why I walk the line.

This post originally appeared on Musings by Mama.