Erik Quinn: The Heart of a Family: Last Serving

Wednesday, March 28, 2007

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.

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Blogger Lisa R said...

To Bad I do not quietly know how to bow out of things like the list...I just felt the need to express what others were feeling...I actually got a response for once but don't worry only about 3 do you get email 1 time a day that is what I need.

anyway here's to touching bridges oops!!!

Love you tons!!!!

3:50 AM  
Blogger Every minute counts.... said...

I agree wholeheartedly with what you have said. The list has been getting more and more "clicky" every year. It is depressing when adults act like teenagers! I have been on the list for 4 years and I myself post and get little information back.( I think mostly because my situation is more unique than most.) Like I emailed to the list, I have friends from the list that I reach out to (like all you bloggers). It's okay to look for more positive reinforcement...I know that I need that myself!!

7:06 AM  
Blogger ~Deb said...

It’s literally draining you. You have enough on your plate, but your compassion for these people as well as your ability to relate to them is the key reason why people are drawn to you and want to discuss the important issues that they face. But, stepping back from it is okay. I hope that you don’t feel guilt in doing so. Take a little at a time if you want, but don’t overwhelm yourself. Talking about issues of what a teenager may face with WS is jumping the gun right now. That has to give you some sort of high anxiety when you read this stuff.

Step back. Write it out and see how that works.

8:40 AM  
Blogger Kim, Grandma to Ava,ws said...

I feel no guilt at all about dropping the list. At the beginning when I was starving for information, the list was great. But things are different now;we have a handle on Ava's issues (for lack of a better word). And frankly, I think it is pretty delusional to expect food supplements to save the world. Goodbye, list. On a lighter note, I LOVE reading everyone's blogs. I think I learn more from this wonderful select few than I possibly could from reading 53 emails a day. I love you guys!!

9:18 AM  
Blogger Lisa R said...

The digest rock one click come I did not know about it sooner!!!!!!

Love Ya...I am home sick today...well just home LOL

6:58 AM  
Anonymous Aspen said...

I too have mostly stopped reading the listserv messages. It gets so overwhelming. I do have to appreciate it for a few things. It is after I met all of my amazing blog friends.

8:42 AM  

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