We just got back from Philly yesterday. The conference was great as usual. Except I've been in funk today. I think I just am over stimulated and pulled from the daily routine where I don't have to be conscious of Duchenne every millisecond of the day. The great thing about the conference is that it gives me a jump start in terms of doing something about this. I want to speak out more, raise more money, help more parents and kids, and just let it be known that there is this community that exists with members who are trying to make sense of something that makes no sense. I feel like we are the little world on the speck of a flower like in that movie, Horton Hears a Who. Like that community, which is not known to the outside world, we are screaming, "Help!" and waiting for the chance that someone out there will hear us and save us. Because of the conference I know we will continue to scream louder and louder, and eventually it will happen...someone will stop their mad rush through this world long enough to hear us. I hope this comes off as a positive perspective...that's how I mean it! Anyway, THE most valuable thing that I always get from the conference is the chance to reunite with my "other" family so that I can feel "normal" and just decompress for a little bit.


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Comment by Penny Hauer on August 10, 2010 at 2:43pm
Kelli I was given your name and told that you are the go to person for IEPs I need help my son Caleb is 10 and its alll falling apart for him his best friend Deigo just moved today and Caleb said I will never go to recess again cause he helped me when I fell no one else will. Im waiting for the date for iep before the 23rd when school starts Jamacha elem. in rancho Sab Deigo El Cajon area. you may know that if you can't see the problem it is hard to accomodate the child Caleb can still walk so whats the need he is tired all the time could you please call me please I need help #619 929 2427 Penny Hauer thank you
Comment by Rhiannon Traigle on July 22, 2008 at 1:46am
LOL! I love it...you describe it perfectly with Horton Hears a Who!!

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