I’ve been a blogger since 2005. I wasn’t blogging about the wonderful world of writing; I was writing about my son. He was diagnosed with a strange genetic syndrome and it very much felt like we were set adrift after that. Few had seen the syndrome before. We were alone. I started my blog at www.williamssyndrome.blogspot.com because I was standing atop my raft and I was screaming for somebody to hear me. More than that, I knew the feeling of absolute isolation. If only one person stumbles across my experience and it helps them in any way, then that is what I want. I would have sold my soul to read somebody’s blog when our diagnosis hit.
The Williams blog is a much more honest blog than this one can ever be. “Blah, I got a rejection!” is far less visceral than, “My son is dying today.” The Williams blog is a blog of happiness and even more so of pain. I updated religiously for about three years until somebody said, “Hey, I found your blog. My child has Williams, too.” Somebody finally heard the screaming.
I started this blog in 2008. I kept updating my other blog as well, because there was a lot to say. Then I gradually started spending more time here. I apologised for my long absences on the Williams blog, and I urged them to come here if they wanted to keep their finger on my pulse. Why? Because this is my safe, happy place. Because sometimes it’s too hard to write about the struggles that we’re going through, and also because I’m embarrassed. I’m embarrassed that I can’t always be strong. I’m ashamed that things in the Williams World have temporarily broken me to the point where I didn’t know if I would ever be able to stand up again. But look, I’m standing. We all are.
I received an email the other day. A mother told me that my blog was her introduction to Williams Syndrome when her child was diagnosed. She said that she read my blog start to finish. She was my one person, the one I wrote it for. But the very next day, another mother told me about when she started reading my blog. I had written about looking for a park with few children so they wouldn’t tease my son as he played. She said she sat at her computer screen and cried, because she did the same thing.
This humbled me. Greatly. These women are some of the strongest that I have ever met. It’s humbling to hear that some of the tiny things that I said affected them. I know that these women have greatly affected me.
My Williams blog updates have become extremely sporadic. I keep in touch with most of these women via Facebook. I cry privately to my friends instead of crying publicly on the blog. I spend more time here, in my whimsical little writing world, because it’s easier, quite frankly. I love the joys and challenges of writing. And compared to genetic testing and seven years of potty training before it finally took hold (Hooray, it finally took hold!) writing challenges are a breeze. And the best news is that my son is doing so extremely well lately that I simply choose to enjoy it instead of writing about it.
I’m realizing, though, that simply because our life is taking a delightful turn for the better, that doesn’t mean that other people aren’t still struggling. It had never occurred to me that I was being selfish by not keeping up the Williams blog, but I realize it’s true. When you child is diagnosed with something scary and seemingly insurmountable, you scour the universe looking for hope. My son is speaking. He’s holding a crayon. Today he washed his own face. There was a time that we didn’t know if that would ever be possible. These are things that I need to write about.
I’m going to recommit to my other blog. I’m telling you this here because…I’m not sure why. Perhaps you’ll be hearing from me less. Maybe you won’t. I need to figure out how to balance life, family, Shock Totem, writing, and two separate blogs. We’ll see how it goes. But I wanted to let you know that you feel like family. And if you ever want to pop over to the Williams blog, you are definitely invited. Come over and play.