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The organizational meeting of my support group was Saturday night. I thought it would be more comfortable, more casual, for us to meet in a restaurant for dinner.

My husband and I packed a tote bag with a few of the materials I’d put together, and got to the restaurant a little early. Within about 15 minutes everyone had arrived. We had a terrific and lively discussion. Several parents shared personal stories, there were questions asked and ideas shared.

I explained that I was looking for a ‘core team’ to manage the group, share responsibilities and help support the parents who attend the meetings. Before the meeting ended I had a ‘core team’ of 4 people, other than my husband and myself. One parent offered to provide the refreshments for our September meeting and another parent offered to help spread the word about the group.

I’m now feeling energized and looking forward to the monthly meetings. I was struggling, trying to get so much done by myself and now I have a ‘team’ who are willing to support me and help with the responsibilities. I feel like a weight has been lifted.

I truly needed the organizational meeting to go well because less than 24 hours before the meeting I found myself emotionally devastated.

At 11:16 Friday night I checked my email to see if there was a message from the Sponsor of the group, as she had another meeting to attend before mine and was hoping she’d make it. I found an email from the individual I had initially asked to manage the support group with me.

She informed me via email that she was not going to be able to be as ‘active’ in the group as she thought, that her life was ‘hectic’ and she knew she’d ‘disappointed me’, but I ‘HAD TO REMEMBER’ that she’d disappointed herself too. She hoped that I ‘respected’ her decision… it would have been nice if she’d have demonstrated some respect for me at any time during this entire process, rather than making promises she didn’t keep and reassuring me she was committed to doing this, even when I gave her opportunities to bow out.

She couldn’t respect me enough to call me and talk to me. She couldn’t respect me enough to think about my health, my disabilities and limitations BEFORE she agreed to go into this venture together, or each time she promised to do a task but didn’t come through, only to offer to do another task that she didn’t do… putting me further and further behind the 8 ball, trying to play catch up, because I trusted her and took her at her word, gave her the benefit of the doubt.

Now, I go into these first meetings with resource materials from only the counties I had contacted, and my flyers are not being distributed in all the counties they could have been, had this individual done what they said they would.

I am tired of people who claim to be my friends thinking they can treat me any way they like and I’ll just accept it, I’ll tolerate it, and then expect me to show them ‘respect’. In what universe is that even rational?

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