Friday, February 15, 2013

Advocacy Day 2013

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In one of my last posts I talked about how much I really wanted to attend Fragile X Advocacy Day.  Just as I had resigned myself to being unable to attend, a couple things fell into place that have allowed me to go.  I'm so completely excited for this opportunity, I've been struggling to put all this excitement into words since I found out and still can't, but wanted to put an update on here anyhow!

Since we received Ayden's diagnosis, I have been actively sending letters to representatives and senators about Fragile X (with the help of the NFXF).  To be honest, I've never taken part in anything like writing letters or contacting representatives until then.  I've voted, I stay informed...but never more than that.  It's a shame that I haven't been more involved, really.   This past election, I found my voting decisions strongly swayed by the way elected officials dealt voting on all subjects related to Fragile X.  For the first time, I spoke out for someone running for office - one in particular, Debbie Stabenow (who I am very much hoping one of my meetings is with during Advocacy Day!)  This, is my next step and to be honest I am terrified.  I'm not good at meeting or speaking to other people, and I'm not just talking about the people I'll be meeting with on Capitol Hill  There are around 175 other people attending Advocacy Day, many of whom I follow online via Facebook, the Fragile X group, or blogs - but meeting them in person is quite different.  I had a dream the other night that I was laughed at and told I shouldn't have come and to stick to doing things online because people liked me better there.  There was more to the dream, but it certainly did not help my anxiety!

I don't really think that would happen...mostly at least.  There are quite a few people who I look up to an awful lot that are going, and I am going to be honored to meet them.  That's the other part of this really, the part that is for me.  Where I get to finally meet other Fragile X parents.  The ones that have been there for both of our diagnosis and helped with IEPs and behavior issues, cheered me on when I have been down, and have SO MANY ideas to make things better.  The ones who don't make me feel like I'm alone in this, not ever.

I can't wait to fill everyone in on my first Advocacy Day look forward to that sometime after March 7!


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