Friday, March 8, 2013

Advocacy Day 2013


Wow.  I'm still in awe of how amazing the past couple days were.  I was excited for this, I knew what an amazing experience it would be - but I was not prepared for how much more it would be than what I expected.

I arrived in DC on Tuesday and met up with my roommate at the airport.  A small thing that I am so thankful for!  I had a small knot in the pit of my stomach from the second I left the kids and Mr Awesome at the airport.  Having a buddy to travel to the airport with and eat lunch before training really helped.  I was feeling much better by the time I walked into training - but began to fall apart [inside] shortly after.  Shortly after training started we were asked to introduce ourselves five different times in five different ways to someone else in the room that we had not met before.  Each way was specific - but it also put me entirely out of my comfort zone.  (as if I wasn't already).  By the time the five introductions were complete, I sat back down in my chair ready to vomit from anxiety.  Thank goodness I had time to recover and focus on training for a while before I had to speak or move again.  I had just about recovered when break time happened, and then forced myself to do a couple more things that kick started my anxiety yet again.

First, I hunted down the amazing Tracy and Mouse from Developmental FX.  These two women are amazing.    I've used their articles so many times to help with problems with Ayden and even to hand out to his teachers/school.  I introduced myself, told them a little about Ayden and asked if I could pick their brain later on a couple things.  They most graciously offered me their card and told me to call them if we didn't run into each other again over the next day or two.  This moment right here alone made my entire trip worth it.  If everything else had gone poorly and I had a terrible time (which was NOT the case at all) it all would have been okay because of this.

Second.  Well, I don't need to say anything about this other than I still cannot believe I agreed.  Yeah, that's me with the big green X.  (Thanks, Melissa  :P)

Training finished, and we broke into groups for dinner.  I had met the lovely Kathleen of My Son's a 'retard'! whom I had been following her blog since advocacy day last year during those five introductions I talked about above. She had invited me out to dinner with the group she was with.  Thankfully, there was a cash bar after training so I was able to enjoy a nice glass of wine to help with my anxiety before dinner.

Dinner itself that night was...let's go with "undesirable".   The company was outstanding, the food and restaurant not so much.  Let me just put a small sample of the menu - and make sure to pay close attention to the highlighted dishes in this picture:

The next day was the reason I was there.  As the evening before progressed, essentially every single flight out of DC was cancelled for Wednesday because of the impending snow storm.  Some channels were predicting 12-14 inches of snow.  By 4 am, the federal government was officially closed.  At 7 am - we received a call from Congressman Harper who had graciously scheduled a tour of the house floor for us.  Congressman Harper also has a son with Fragile X Syndrome - he takes especially good care of our Advocacy groups while in DC each year.  We were advised by him to head to the Capitol and that our tour was still on - so off we went!

Our first stop was a tour of the House Floor - a place not open to the public.  We were not allowed to take any pictures or anything really into the room itself.  The amount of history in that one room is just utterly phenomenal to sit and think about.  Congressman Harper talked about the 1954 House Chamber Shooting and showed us the actual table that was damaged during the incident.  (Which I was sitting one desk over from - the bullet hole still in the drawer and repair marks on the surface of the table quite visible).  He also talked about how President's Roosevelt's speech on December 8, 1941 was made in that very room.  There were other things talked about, but those were some of the highlights.  On our way to our first meeting, I was able to visit Statuary Hall and see the newly unveiled Rosa Parks statue as well.

At some point during the morning, it was decided to run a condensed version of our scheduled appointments.  This meant that we were to head to each Senate and House office that we were assigned to and request an early appointment.  I personally met with staff members from the offices of Bill Huizenga, Daniel Kildee, Mike Rogers, John Conyers, and Sander Levin.  Our group also met with staff members from Dan Benishek, Fred Upton, and Gary Peters offices.  For the other six representatives we left a packet of information about Fragile X and the different things we were requesting their help with.  On the senate side, we were able to personally meet with Senator Levin for almost an hour.  Turns out the "snow storm" was a blessing in disguise for us because so many offices had meetings cancelled and time to meet with us.

The meetings them-self were so incredibly amazing.  I've never felt like my voice has really been heard in the government even though I do my part and vote.  This though, was not like that at all.  It was such an amazing, empowering feeling to leave those offices knowing that we actually were making a difference.  Seeing the person we were meeting with become interested and start asking questions..well, it was awesome.

Our day at the Capitol ended as the House was voting to extend their pay freeze and uphold the current sequester until September 30 (end of the fiscal year).  It was quite something to be sitting in Dan Kildee's office with his Chief of Staff watching the house members vote in the room I had just been sitting in earlier that day.

I ended the actual day at a dinner with a whole lot of other Fragile X families - something not in short supply while I was in DC!

Following dinner, I headed to the National Mall to visit many of the memorials and monuments with some of my new friends - a must for my first time in DC.  You'd think visiting these places at night wouldn't be as awesome, but I'm fairly certain it was the best possible time to go (in spite of the cold).  It's humbling and breath-taking to see and I was very thankful the weather had cleared enough for me to go.

There was just so much that happened while I was there, and I wanted to make sure I really covered the reason I was there.  I would be leaving out a huge part of my time there though to not talk about all the amazing people that made up this day who also took time to do the same thing I was doing.  There were around ~180 other parents, family, friends, and self-advocates for people with Fragile X with us and they are the MOST AMAZING group of people I have ever been a part of.  We are very alone in the aspect that until recently I have not even met another family living with a child with Fragile X (since knowing about it) and in two days I met more than I can count.  People that are eager to share ideas about their kids and happy to hear about yours - especially the bad!  Mom's who share this carrier status - and make you feel normal when you're around them (instead of like the crazy one).  Even though I was more than ready to return home to my family, my X-Family as I'm going to call them have been missed every second since I walked out of breakfast yesterday morning.   I am counting down the days until I am able to see them again.


  1. Can't believe you left out DC Cupcake shop!:) You hide your anxiety well. I actually forgot that part about you until I read this post. Enjoyed getting to know you and your sweet family!

    1. Hah! I know! There was just so much going on. I have to say, I am completely unimpressed with their cupcakes. I thought they were supposed to be some of the best and I found them lacking flavor and dry.