Wednesday, March 13, 2013

Advocating in DC for Fragile X

I wish I would have had the time to keep up on my blog during my trip to Washington because life didn't slow down any once I got home. There were so many awesome experiences that I wished I could write them down just as I was feeling them, but instead I have to go off memory.

So my trip was 3-fold:

I think that is how I am going to split up my trip experiences so that I can get a better grip on what I am trying to say about my 3-tiered trip.

So, since I am sure most of you are anxious to hear how advocating went, I will start off with that one first. As a fair warning, though, it will not be strictly about advocating, but also about being with many others who are affected by Fragile X Syndrome.

My co-leaders, Tiffany and Burgandi along with Burgandi's fiance, Bill, accompanied me to Washington DC. On Tuesday was our advocacy training day starting at 1pm. Right when I was walking toward the registration table I saw a great friend of mine that I have never met in person, Heather! She was in the middle of a conversation, but I rudely interrupted by hollering her name with excitement and walking quickly towards her with wide open arms, "Heather! Aaaaaahhhh!!" We hugged, held arms and looked at each other and repeated that a few times. It was a bit surreal to finally see someone in person whom you have talked to over the phone and Facebook for years about the affects of Fragile X Syndrome on our children and our lives. Heather had gotten my phone number a few years ago when her son was diagnosed with Fragile X and she was looking for hope. I hope I gave her that.

Heather introduced me to her hubby, Lou. He was very nice and even invited join them for a drink at the bar with him and Heather later that night. Before I could decline, Heather quickly slugged Lou and proclaimed, "Lou! She's a Mormon! Mormon's don't drink!" When I heard that I thought it was going to be the funniest line I'd heard all night... fast forward after the training session and Heather introduced me to one of her friends who was pregnant. We were chatting it up talking about, you guessed, Fragile X, when Lou came in to join the conversation. Being the nice guy that Lou is he asked our pregnant friend if she wanted a drink, Heather slugged Lou in the arm, "Lou! You just asked a pregnant woman if she wants a drink!" Lou did a face palm and said, "Man, I'm on a roll! I just asked a Mormon and a pregnant woman if they want a drink!" Now that was the line of the day. It made me wonder if there is some sort of joke out there that starts out, "So a Mormon and pregnant woman walk into a bar...

Now back to the training, it was so empowering to be in a room with 192 other advocates who were hungry to learn about our purpose of being there in DC. AMAZING! We were taught more about the ABLE Act and the TEAM Act and the importance of keeping our funding going for research and the connections that are being found between Fragile X and Austism on the FMRP gene. Pretty amazing and, honestly, overwhelming information for little ol' me. So, half way through our training we took a break to do the "Harlem Shake." What? You haven't heard of it? Do you live under a rock? Here, let me show you the Fragile X Advocates Harlem Shake...

After all that fun, we got back into the serious business of training, but I can only sit for so long before needing to take a potty break... I know, you wonder where I am going with that one, but, I have to specify because it makes the experience as funny as it was. Anyway, I went to the restroom and, of course as all girls do, I took friends with me. Well, after the potty I am some others congregated to chit chat for a bit and I noticed another girl I had never met before, looking on and thought maybe she wanted to join the conversation. I turned to her to include her in the conversation and she started off by saying something to the effect, "I know this probably sounds stalker-ish, but you are more beautiful in person than even in your pictures. I read your blog and I love it!"

I have NEVER had this happen and I felt like a movie star. I was so flattered I hope I reacted graciously. Cortney, was so sweet and I was so excited to meet her and talk to her. I asked her if we could take a picture together, and for memories sake we took it in the entry way of the women's restroom. Ha! Love it! Thanks, Cortney! You made me feel special!

I also got to meet, in person, a fellow FX Mommy Blogger and Facebook friend, Melissa and her hubby, Eric. I was giddy to meet her in person and just had to give her a hug! She kept saying that I was so much taller than she thought. She would shape her thumb and index finger to about an inch high and joke that I was only "this tall" on her screen! Ha!

Why, when I am doing all this advocacy for my kids and so many others like them, do I spend so much time telling you about my friends?

Because this is my world.

Fragile X.

To be surrounded by so many others who know exactly what I deal with everyday and to talk with them is just so much fun and such a strength to me.

Top left: Heather, Lou and me   Top Right: Melissa, Flat Holly (smile), me and Eric (wish I could have met Holly in person)
Bottom Left: me and Cortney    Bottom Right: a bunch of us celebrating the great day on the Hill

After our training was over we stayed and chatted for a bit and then had to leave quickly to get ready for our LINKS dinner. LINKS are the individual leadership groups from different states and areas through the National Fragile X Foundation.

When we got home from the dinner it was time to set up all our folders for the 4 Congressman and 2 Senators for our state. I was so glad that Tiffany (my second cousin who has 2 sons with Fragile X) and I had brought pictures of our families and other children from Utah to show to our Congressman and Senators. This especially became a blessing as we listened to the weather report for DC saying that a big storm was going to hit the next day, on the day we were going to be walking around to lobby for our cause. Schools were closing down, businesses closing down, they were getting ready for power outages and snow removal. Tiffany and I were a bit scared that perhaps the reason for us coming to DC was not even going to come to fruition. We just prepared for the worst scenario and planned on being there to advocate for our kids.

At 6am we were awake and heard on the news that they were expecting 8-12 inches and that the House (Congressman offices) were closing after 1:00. All of our Congressman meetings were scheduled to be after 1:00. We were a bit disheartened but knew we would just try to meet with them early on.

We got down to our hotel lobby at 6:50 am and our bus was already gone even though we had been told they would hold it until 7:00 am. We started to panic a bit and even resorted to calling sick Holly, who is the afore mentioned "Flat Holly," back in Illinois (6am her time) hoping she had some phone numbers of others who might save us in our hour of need (thanks Holly), but quickly decided we were just going to take a cab to the capitol, as we were getting ready to do so, the owner of the bus company that had been hired by the NFXF to take our groups to the capitol, was our front of the hotel and heard our dilemma and drove us in his personal car to the capitol so that we could get there on time. It was at that point that Tiffany and I knew there was some Divine Intervention happening to make sure that our purpose of coming to DC was going to happen, regardless of weather or lack of transportation.

We had a great tour of the House Floor and our Nation's Capitol given all of us by Congressman Harper of Mississippi who also has a son with Fragile X. He is an amazing advocate and an amazing man. It was so neat to see some new things that I didn't get to see when I was there 4 years previously. My two favorites were the Speakers Balcony and the chapel... ya, they have a chapel in our Nation's Capitol. Pretty cool!

That's George Washington in the middle, cool, huh?
Then we were off to our meetings. We started with the Senate Office and luckily we were able to ride the underground tram there so we didn't have to walk out in the cold, rain, sleet, wind quite yet. But after one positively received meeting with one senator and a failed attempt at a closed office of the other senator we out to the cold, rain, sleet and wind. Let me say, it was no Utah snow storm but it was COLD!!! So cold and wet! Walking 3 blocks in that rain you need a positive attitude. So I channeled my inner Mary Poppins and "Voila!" Just a spoon full of sugar and the rain gets a little sweeter...

So after our little musical pause, and mind you, it was musical, a cute little elderly couple got quite a kick out of my Mary Poppins impression, we were at the Congressman Offices.

It was only 11am by this time and our first meeting wasn't scheduled until 2:00 but we figured we would try to meet early. It was a success! We met with Congressman Stewart who was excited to talk with us and soon after that we met with Congressman Bishop's Staff member for another way-earlier-than-scheduled meeting. At this point, sweet Burgandi's fybermyalgic body just couldn't handle any more and she needed to go rest. Tiffany and I felt confident we could handle the last 3 meetings on our own. After saying goodby to Burgandi and Bill, and a hefty lunch in the House Cafeteria we were off to conquer the world.

Oh, and the House did not close at 1:00. I guess most of them stayed and weathered the storm otherwise known as the "snowquestor." So our other meetings went great and we were so happy that we got photos with the congressman even if we didn't actually have a meeting with them. Our proposals were received so positively from all we were able to talk to and left us feeling so excited about our day.

We are confident that we said and did the right things to make a difference in our children's lives. It also felt so empowering to be a part of our democracy by lobbying for our cause on The Hill. You get this strong sense of the love for your country and the power we have as a people in our nation.

We finally got back to our hotel room at 5pm and flopped on our beds in a heap of excitement and exhaustion and then quickly got ourselves gathered back together when I heard from my dear friend, Tiffany who had the great idea for a group dinner all the Fragile X Advocates who had not gone back home yet. It was great to meet Tiffany's dad and get to know the man who raised the woman that made such a difference in my life when Brother was first diagnosed.

The dinner was so much fun and the food was great! I even had the privilege of sitting by sweet Kelly, who is the "bunny" in the Harlem Shake video. She has Fragile X Syndrome and she was amazing to talk to and to hear her perspective about her world and Fragile X. It gave me so much hope that one day my daughters could possibly be as high functioning as she is. She was so much fun.

It was a great ending to our mentally and physically exhausting 2 days. I am so glad that we had this opportunity!

Thank you to Tiffany and Burgandi and Bill for lending your voice to the cause and giving me the strength and desire to go this year.

2 remarks:

Cortney AbouElSeoud said...

Oh my stalker-ish ways are immortalized on the internet! I loved meeting you! I hope we have time to actually sit down and chat sometime as well!

I met Heather and Lou and talked to them for a while, but couldn't remember names!

Rachael said...

Ha ha! Courtney you are so sweet that I just had to put our little story on here. Besides, you're my first ever "fan!" Tee hee! Thanks! We all need to compliment others more, it's a great trait to have ;)