Last Serving

One year ago I subscribed to the Williams Syndrome Association (WSA) listserv. I'm not certain why I believed this particular group of adults would differ from those in the "real world," but I was probably so relieved to find people with children like mine that I was completely blind to the cattiness, bickering, assumptions, and judgment sometimes expressed there. I chose to receive a daily "digest," which means I get receive all daily e-mail messages at once each day. I stopped reading it on a daily basis months ago, as there are many truly desparate messages regarding extreme cases of WS that do me no good to read at this point. There are stories of children with WS being talked into sex at school or suddenly passing away from hidden health issues. I have been very careful about what I read there, as I know it is much too early to do any sort of worrying about these things and I can only do what I am able to do to care for my son at this time. After that, what will be will simply be. My heart goes out to the people telling these stories, but I can't take on any more negativity or pain myself. Even if I tried, I am not wearing their shoes and will never truly understand what they are going through. I end up feeling completely helpless because there is nothing I can say or do to help them. On the other hand, parents are sometimes actually scrutinized or questioned after expressing how great their child is doing physically or mentally by others whose children aren't doing so well. Depressing.

The time has come to read the listserv even less, if that is possible. I don't plan on unsubscribing from it, as I continue to glance over the topics before I delete each daily digest and plan to continue to post questions as they come up when I cannot find an answer myself (the last question I asked generated no response, anyway). There are sometimes alerts on articles or studies I find very helpful. I just don't have the energy for the badness I feel in this particular place anymore. I can completely see why the "old timers" eventually unsubscribe. It can be a light in the darkness at the beginning of the journey, but the negativity can be poison.

For the most part, the people on the listserv are kind and accepting, and I'll be sad to stop reading them there, but it's time for me to take another step back as I heal and go on with my life. Hopefully, some of them will continue to visit me here and e-mail me personally. They are a valuable resource in this journey, and I don't know what I would do without them.