Friday, March 30, 2012

I've joined the cult of Fragile X.

The National Fragile X Foundation (NFX) Annual Advocacy Day in Washington DC was a life changing experience for me.  It's been hard to wrap my brain around what EXACTLY happened both there and afterward, and how it's affected me and impacted my life - and even the way I feel about myself.
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. 

Advocacy Day itself, March 6th, started with 7am buses to the Capitol Building. 
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.
The day was a flurry of big white buildings, endless walking, polished lonnnnnnnnnng hallways, secret tunnels and tiny fast trains a little too reminiscent of Willy Wonka.  I felt like I was constantly asking "Which way? Where? Huh?"  It all looked the same to me. Truly.
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!

And we were also invited to have coffee with Scott Brown for his monthly constituent breakfast.  Yep, he asked the MA FX advocates to attend - quite the coup!  Regardless of political party affiliation, it was exciting and fascinating to participate in the legislative process, and for the NFX foundation the invitation to this breakfast was unprecedented!  We were very happy.  
We also each met with our own state reps and senators - including  the offices of Rep Richard Neal, Rep James McGovern, Senator John Kerry, Rep Barney Frank and Rep William Keating.   
 It was an amazing day.  I loved being a part of the legislative process and advocating for children and adults with disabilities.  The energy and passion in Capitol Hill is palpable, and I had much more fun than expected running around and telling my family's story and explaining our needs to their various aides, politicians and offices.
Rep James McGovern, who signed on to cosponsor the ABLE act that day! He rocks. 
 I could try to go into detail about the different acts and cosponsors and support we were looking for, but Tim Geel's blog post is a great summary.  Please check it out.
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.
Holly had told me "I'm always so sad when I leave, I'm leaving all my friends."  I wasn't really sure what she was talking about, I just met this people! AND I'm from MASS!  How could I possibly actually miss these people, I barely knew them?  Whatever, that Holly, she's kind of a softie. 
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.


  1. I'm so happy for you that you had this amazing experience - I got goose bumps reading this... Like my mom said, Owen could not have a better mother than you.

    P.S. I'm from Mass and I cry all the time, dammit!!

  2. Translation : That Holly was right :-)

    I still cry sometimes, like now, sitting in Ihop reading your blog.... miss you!

    1. Stop being right all the time. Geesh. It's soooo annoying.

  3. Love it!!!!! Such a great blog K!

  4. I'm from Jersey so I think we have the opposite problem... holy drama up here in these parts hahaha

    advocacy day is so empowering & I love reading all of the first-timers reactions... the beautiful overwhelming-ness of it never fades :)

    1. I like drama, just not my own!
      I found Advocacy day very tough to talk about and define - 'overwhelming-ness' is so true!

  5. Awesome blog, Miss Kathleen! It was so good to be with you and share your amazing energy. This is just the beginning, baby! You got years of joy like this ahead of you! I hope I'm there every step of the way! Oh....and us Western girls nevah cry! Bahhhhaaaahhhaaa

    1. SO many reasons to like you, not the least of which is rhinestones on your ass and NO tears! You rock sassy lady!

  6. kiss kiss, hug hug.... elbow grab, close walking and talking :-) I miss you something fierce, and your rotten Mass mouth too :-) So glad we went, and so glad to know we will be together there again next year.

    1. Should I have been more specific? "AMY Z is VERY affectionate, which I COMPLETELY allowed b/c she is awesome"? Miss you too, lots lady!


Note: Only a member of this blog may post a comment.