Saturday, February 21, 2009

Trying to understand!!!!!!

As I sit here trying to understand what has happened over the last few days in a DIPG group on yahoo I was a member of. Yes, that is correct WAS. I always thought that the group was set up to help families that are either just starting their journey with DIPG or have all ready ended their journey. But, when one parent offers advise to another about setting up a foundation, she is accused of given inaccurate information only because one of the moderators was unable to do a google search. Now how can one parent openly and willingly call another parent a liar because she couldn't search correctly. I did a google search on the information provided and I had no problems. I guess maybe I might know just a tad more about searching for information then the other. Well after mother 1 bad mouthed mother 2, I felt it was my duty to come to her defense. In doing so I was also placed on moderators status as was mother 2. Then aunt 1 chimed in to answer a question I had in regards to mother 2's post and she was also placed on moderators status. Now what I don't understand is mother 1 totally rips mother 2 apart and the moderators of the group feel that that is OK. Well I guess that's right since mother 1 is also a moderator.
Over the course of two day's this kept going back and forth, I have to say I did take off the gloves and really voiced my opinion about the moderator within that group. I also told them to get their heads out of their butts and remember why we are all there in the first place. That may have been what kicked me out. Oh well there loss.

See several months prior the moderator's decided to kick two very knowledgeable fathers out of the group because they also questioned the moderators. So at that time the fathers decided to start a group on google http://groups.google.com/group/dipg2/members_invite so now at least they can still offer the support and knowledge they both have from taken this journey. The moderators of the yahoo group know that mother 2 and I are also members of the Google group so hence we are placed on moderators status on yahoo. So it is my feeling that within the yahoo group if you dare disagree with any moderators you are then kicked out of the group. I think they think that they are GODS or something. See most of if not all of the moderators of the yahoo group belong to a foundation set-up to bring awareness and funding for DIPG. Well alot of us have foundations for our children, as I do for Aimee called Aimee's Army. What really kills me more then anything which I did voice in the yahoo group which is also what probably got me kicked out is that One foundation is not greater then any other, One child is not more special then any other. Then I added that if my 12 year old daughter was able to see that us raising awareness and funding was not about her or her foundation why couldn't these other parents. I guess to them it is ONLY about their child and their foundation. It really kills me that they feel that their cause is more important then mine, which is actually the same. I don't' think I will ever understand the minds of some adults. Two high moderators within the yahoo group feel that their advise and opinions are greater then mine. Which I don't understand how since neither has or had a child with DIPG. Neither has ever lost a child to DIPG. So how can they honestly think that their information is more valuable then mine when I actually have been there done that. I hope someone can help me understand how or why I was kicked out of the group for simply voicing my opinion. Is this still a free country where we have freedom of speech?????

1 comment:

DIPG said...

I am absolutely floored that they would kick a parent out of a support group!