Chiari Malformation

I've had an email discussion lately that hasn't gone anywhere. I wrote the following response over the last 24 hour period but I know it won't do me any good to send it because I will likely get the same response again. However, I need to get this out of my system.

1) I feel the group did accommodate us by meeting at our house when we first joined so I could be more physically comfortable and also for the kids to get to bed. Other than that, I am not sure what's being referred to by saying home group has been "bending over backwards" for us. Most home groups rotate homes routinely anyway, or at least most did last I was aware of. We try especially hard to make sure we do not complain, heck we keep most things to ourselves period, all to make sure we don't come across as needy or a bother. We are frequently told that behavior frustrates people to no end because we never let anyone know our needs, but yet now one person feels we have home group catering to our every need?

So which is it: do we say too little, or do we say too much? We actually have been feeling left out and/or ignored much of the time because of things such as the party we had which also helped raise funds for the brain tumor walk we do every year up in Phoenix, though we made it clear people were certainly welcome to just come enjoy themselves without contributing; we sent invitations to nearly everyone at church. As for home group, P. came but only one person RSVP'd, despite it being planned a few months out, so I was left not knowing if anyone was going to show, such as when people forget to respond but show up anyway, which would have been fine. We prepped for the whole church just in case, but when only P. from home group showed up, along with D. from church came with his daughter, it certainly felt like nobody at church cared about us or the cause one bit (J. had out of town plans and kindly made a contribution during group; she has been a wonderful friend long before we joined group). But who can't take 3 seconds to click "no" on FB or email invitations? The only RSVPs we received were the ones from out of state--the people we sent invitations to out of courtesy because they like to know what's going on with the walk every year (someone once traveled from NY to do the walk with us). It was just one more kick in the gut, one more confirmation to the feelings I have written about on my blog. Not responding to invitations, not letting people know if someone will be late (like when people are late to home group and don't call, or simply don't show up at all), not sharing change in plans, saying they need to talk to us about something and will call at a certain time and it never happens, is very frustrating and after repeated incidents it feels we just aren't wanted, and certainly don't see the "bending over backwards."

Someone from home group came over unexpectedly one morning, upset and crying. I'd written a very detailed blog post about something impacting my family, and J. read it the night before. She came over first thing in the morning, feeling A) if I can post the situation on my blog for the world to see but not share something so important with home group, who is supposed to be a family of sorts, then I need to face that having dire needs is not a weakness; however, what seemed the most upsetting thing was B) I not only failed in my lack of trusting the group, but home group also failed in that nobody saw or figured out what was happening in front of their eyes. I have have considered J. a very good friend long before I joined this home group. She is one of only 2 people who has kept in touch with me while I've been stuck at home these years. I treasure her friendship.

Sorry but I still don't see us as bad guys here. We are deciding which churches to check out. It will be strange after having gone to this one the last 7 years, but enough is enough.