Monday, December 19, 2011

One of Those Days

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?!

3 comments:

Erika said...

Sounds like a group like this would be perfect for our area!
I feel like I need to tell you that while i don't fully understand your world as a Mom with a wonderful little girl like Abby, I still love conversations with you; I always learn a lot, and get to see things in a different perspective which helps me grow and mature.
You are amazing and I am thankful for you. We need more people in this world with your passion, drive and empathy! Keep sharing your experiences please!!

Anonymous said...

One thing I know; when I plant a seed in your brain, you will nourish it until it "blooms and grows". God is working within you to do wonderful things in our community, all because you have a miracle girl! :) Amy

Debbie said...

Great idea Julie - Support groups are awesome; they can be so key to the attendees' emotional well being (regardless of what type of support group it is) in relating to the attendees' issues, frustration, blessings, goals, etc. And Churches, community centers are typically very welcoming - good luck and God bless in reaching out and finding others who can relate to your "new" lifestyle and life.

BTW, I think that saying is soooo Abby!!!!