Today was just one of those days. It gets really lonely here in crazy-rare-syndrome-that-no-one-understands-land. But, my wonderful sister planted a seed in my brain, and I think I'm going to start a support group here for people in our area. If I made it for Cerebrocostomandibular Syndrome, I have a feeling I'd be sipping hot chocolate by myself at the library. So I was thinking about making it for all families with children who have rare syndromes or diseases. I have a feeling they all probably feel lonely now and then, so we can certainly be a support to each other in at least that aspect.
I have absolutely no experience with face to face support groups (all of mine are online) and no idea how to start one! But I'm going to make some calls and try to get something going, because everybody needs someone they can relate to. And as much as my friends want to, they just can't. I live a very different life.
So, wish me luck! I welcome any advice regarding starting the support group...please!!
PS: Isn't this picture describing Abby to a T?!