Let me put this out there - I DIDN'T HAVE A CHOICE to go. You may say I did, but I didn't. I have a big mouth, lots of opinions, I'm a social worker who has spent her career advocating for the rights of children and people with disabilities, sat on advisory boards, given presentations. And um, have you read my blog? I would be a hypocrite to NOT go. I've spent my career trying to help other people, and now it was my turn to go to Washington and ask them to help my son.
I wasn't scared to go by myself, I was approaching it as a 'vacation' - 4 days away by myself in DC! Woot! AND I'd be FINALLY getting to meet all those cool people who live in my computer, who are connected to me by a Fragile X and the internet. Virtual becomes live! Plus a hotel room by myself for 3 nights - that's luxury for a mom of small kids.
In attendance for NFX training and advocacy day were 150 advocates from 37 different states. I was constantly trying to put real faces to names, trying to connect names to states, and understanding the different roles rules and administration of a national agency. The week was a blur of dinners, taxis, breakfasts, training, tourist activities and of course the big day itself, Advocacy Day! Interestingly enough, it became apparent that people from other states are BIG huggers and kissers, and ALSO very close sitters/standers. It's weird for a cold hearted Masshole like me, but I allow it because to me, they are like aliens from other planets - they don't understand our ways, therefore it's some what forgivable.
Regardless of what activity was going on, I was always sitting next to someone just like me. Granted, sometimes they had a penis and were a father, and some were supporters of the FX community, and even an occasional professional from NFX (and even many of them were parents of kids with FX).
But mostly, they were mothers, just like me, who had a broken and Fragile X and had passed it down to our children, down to our sons and some of our daughters. And then, after diagnosis, we could all trace Fragile X back up through our families trees. Women affected by infertility, ovarian insufficiency, and early menopause. Men misdiagnosed with Alzheimer's or other neurological disorders. Many of us are the first generation to live with the 'real' diagnosis, as it was only 'discovered' in 1989. Fragile X runs through their family trees like mine, a delicate genetic code repeating and repeating and repeating to rear it's ugly head with the select 'lottery winners.' We all have two good X's ya know, why did we have to pass on the BAD one! 50/50. Damn.
We had all accidentally checked into the Hotel California, and you know how that place is. NEVER. LEAVE. NEVAHHHH!
The bonds of an similarly experienced life can lead to personality quirks that are perhaps 'made' more than 'born' - lack of self consciousness, outspoken, assertive, fearless (at least on the outside). Squeaky wheels. Stories of "Hey, are you looking at my kid?? WHAT THE FUCK ARE YOU LOOKING AT??" (and that WASN'T EVEN ME!). Watch out for the Southern ladies!
Don't mess with these mommas, don't mess with the honey badgers, don't mess with our kids. This FX thing creates mother and fathers and siblings who aren't afraid to stand up and react, educate, fight. Lots of big mouths at this place. And I LOVED EVERY MINUTE OF IT. These are my people. At dinners, in taxis, at tables, they were everywhere - my FX family.
Walking through DC in the sunrise with the largest of group of advocates the NFX has ever had, I was suppressing tears of awe and happiness and pride.
(I'm from Mass, we don't cry.)
|Thanks to Shannon Gatewood for photo publication rights.|
Capitol Hill has 6 different buildings for the Representatives and Senators, and we were scheduled for 5 meetings in 7 hours, but I attended an extra two (why not? what else to do?) so all told I ran to 7 meetings between the buildings, including a secret squirrel meeting in the US Capitol with a top Health Aide to the Speaker of the House!
|Rep James McGovern, who signed on to cosponsor the ABLE act that day! He rocks.|
|National Fragile X Foundation Advocacy Day, March 6th 2012, Washington DC|
After a day of walking non-stop, we decided to cap the night off with - dinner and a 'walking tour' of the monuments!?? Huh?! These bitches are crazy! And it was worth every minute - only got one blister! Woot! The monuments, although always moving, seemed ghostly and even more devastatingly sad at night. We punctuated our walk looking for beverage stops, but it turns out there isn't many of those near all the big pointy things. Next time, BYOB.
And then, the night before I left - I cried in my hotel room bed before I fell asleep. And then I cried the morning I was leaving, while hugging all my friends goodbye, my FX family peeps. I had to sniffle back tears walking through the hotel lobby. I DIDN'T cry in the airport or plane, because that was FAR too public.
But I cried halfway down the Mass Pike, in the car. I miss my friends.