Wednesday, March 14, 2012

Went!! Advocacy Day update

I went to Washington D.C. for Fragile X Advocacy Day-  It was wonderful.  We made a difference, and I will go again.  Promise.

 I left late-getting in one more day of work... not the best plan as I was SOOOO excited and could barely focus on work, work, work/think, think, think/plan, plan, plan what with all the last minute details and 'what will I say' 'what's she really like'  and 'did I pack my deodorant?' flying around in my head.

I met lots and lots of people. Cool people.  People who know FX.   People who like boots :-)  People who have lived inside my FB and listserv world, who I, really & truly (and a bit embarrassingly) know a whole awful lot about- even though I  had never heard their voice or hugged them, or grabbed their elbow (something I do??uh-huh).

I met so many amazing congressional Aides... and some pretty cool elected officials as well. I cried... the first visit all I said was "I'm Amy, Abe's mom"... and then tears, and head shaking as I tried to make them stop but couldn't - so I just sat back and tried not to hiccup too loudly while the 5 other advocates expressed our wants and needs and hopes for the future.

Pardon the fuzzy pics... didn't want to lug a big camera around.

Meeting number 2- I spoke... don't know what I said, hope they could understand as I had a lump the size of China in my throat... I think I mentioned that Abe is 7 and loves to splash in the water and eat cheese nips.

Meeting number 3- jumped in feet first, found my ovaries of steel ( or platinum- bling bling) and spoke and smiled and laughed as we held our meeting in a caged supply closet- formally known as 'the board room'.

By the time meeting number 8 rolled around- just Dr. EBK and I- we were seasoned vets- covered all points, laughed and joked, agreed to disagree with my representative's plan regarding appropriations, and established a good relationship that will, hopefully, yield fruit for years to come.
Someday I hope that Bj, Bo and Aurelia can go with me to advocate.
and If Abe went... that'd be a whole lot of truth in those offices :-)  

I can't tell you how many times I had almost talked myself out of going... stress, work, anxiety about 50+ things that I can't change- but...  I had made resolutions and vows to myself that I wouldn't let 'what if' or 'eeeeeeek' hold me back... that I would go.
What have you promised?  What have you vowed to do?  Where will you go? 
 I can't wait to see your pictures.  

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