I started to write a blog post about our trip to Washington, D.C. last week and it’s now at four pages and counting. Hmmm. Anyone got a few hours to hear about how AWESOME it was? No? Fine.
To sum up. Advocacy Day: It rocks.
The only thing that rocks harder than a chance to speak to some of the most influential people in this country about Fragile X is the fact that you get to do it surrounded by other parents, siblings and grandparents of kids with Fragile X…oh, and let us not forget the AMAZING self-advocates who also came to Capitol Hill to tell their representatives how much this money and these laws mean to THEM. They brought us to tears at times and gave us so much hope for our son’s future. It is healing to spend time with these young adults and see the possibilities when the fact is most people only want to see the impossibilities when it comes to our kids. We cannot let that be…not if we really want to change the world and we do, don’t we?
I was so intimidated by the very idea of traveling to Washington. I am absolutely disgusted by what I see coming out of Washington on a daily basis…the bickering and finger pointing and absolute cluelessness that seems rampant when you watch those shows with the “news” anchors who are frothing at the mouth over one pointless issue after another *sigh* I really and truly despise politics…but I LOVE MY CHILD MORE. So I put on my big girl panties and signed up…and I am so glad I did!
Advocacy Day has nothing to do with politics. Fragile X Syndrome isn’t a Republican issue, it’s not a Democratic issue…it cuts across political, social, racial and gender lines. We were there as parents of an amazing child who did nothing to deserve having a disability but he does deserve every chance to achieve and to make choices for his life…just like every other child. We were given the tools we needed to go to the hill and make our pitch for supporting the research that is making so much progress. We were given the info we needed to tell them why they should sign on to co-sponsor the legislation that could change our child’s life…that could ease the desperate worries we have over his future.
Despite my worries over our reception in certain circles *ahem* we were met with nothing but kindness and attention. The staffers we met with were interested in our stories, they listened, they asked questions, they cooed over pictures of our adorable Monkey1. We had a chance to meet with one of our Senators which was very exciting. He was gracious and listened to our stories even though he had very limited time.
So, if you didn’t go this year because you hate politicians and think Washington is irretrievably broken and hostile and ignorant…go next year. Even though it may seem to be all of those things when you’re watching the talking heads, remember this…the talking heads wouldn’t have a JOB if they didn’t have ratings and conflict…it brings the ratings. When you are on the ground in D.C. and talking to the staffers who do the research and take the meetings it’s nothing like that at all. By the end of the day all of my anxiety had washed away and I was enjoying myself completely.
If you didn’t go this year because of finances…check out the scholarships because we really need you to be there…you really need to share your story.
- Which, really, that alone would have made me love them! [↩]