Monday, March 23, 2009

Re-caps and Ramblings

Alright, I am finally willing to take some time to update my blog.

There is so much about DC and I think I have already forgotten most of it, so I better write it down now. And so many funny and/or interesting things have been going on at home that I must keep you all posted.

This is me with a security guard (secret service) just outside the capitol. He was nice enough to let us take a picture with him! Cool huh?

My two favorite monuments were the Lincoln Memorial and the Franklin D. Roosevelt Monument. The picture of me standing in line at the soup kitchen door is at the FDR Monument--I just thought, hey, this could be any of us soon! So here I am...

It was so funny, I was so excited to look out from the Lincoln Memorial into the reflection pool to see the reflection of the Lincoln Memorial but it was drained. It was the reflection puddles. Here is the pic I got of the puddles and a cool reflection I took standing from the FDR Memorial.

One of the coolest things that I was able to experience while in DC was the actual day I went to lobby. All of us who were there to lobby for FXS (135 advocates) were given a personal tour by Congressman Gregg Harper of Mississippi. The best part for me was when we were able to go into the House Gallery Floor! Now, when you go on tour at the capitol you are able to sit in the upper level of the Gallery to watch what is in session. But, we were able to sit in the House of Representatives seats and listen to Congressman Harper talk about the history of the Gallery. He talked about it with such patriotism that you couldn't help but feel your heart rise with pride to be an American. One of the facts that stuck with me the most was what he told us about the faces at the crown of the vaulted room. They are molds of various important leaders faces all around the room. It shows only one half of their face, a side view. But at the rear of the room, facing the speaker of the House Gallery is Moses. He is the only full-faced mold in the room. That is because he is the one who oversees all that is being done. He is the righteous judge.

That, to me, was beautiful. So when you hear things like, our government is taking God out of the Capitol and out of everything, well, He is still there, He makes his presence known. However, it is up to our leaders whether they listen to Him, or not. Moses is up there staring our President and anyone else who speaks in the face, but, it is up to the speaker to remember who this face looking down at him represents.

Here is me doing a heel-click in DC! SO happy to be there!!
So after that, patriotism was full in my heart. It was amazing to see the underground halls that we were able to use to go to the various congressman and senators. It was great to put a real, human face on a name that I have seen a million times on campaign signs and commercials--at least with Matheson and Chaffetz. It was humbling to walk down halls of the House of Representatives and see each states flag hanging near all the doorways. I can't tell you what a great feeling this was. Not only was I trying to make a difference for my children's future, but I was learning that little old me could make a difference. I learned a lot about our democracy. And how we have just let ourselves become complacent and let our voices be silenced. We give up and are led to believe there is nothing we can do. But, we can. We have voices. We have rights. We are smart. We have to pick ourselves up and move forward—helping others instead of seeking for reasons why we aren't being helped enough. We are Americans and proud of it!! At least, we should be. If you could go to DC and see and learn the things that our Nation was founded upon, to see what democracy really meant to our forefathers, and to learn what people have done to keep the freedoms of our nation you would cry first to see what we have let ourselves become and then you would pick yourself up, dust yourself off and stand. Stand and know that you are an American with rights and freedoms that were dreamed of and fought for and then brought to pass. We cannot allow ourselves to lay down without a fight. We can make the difference

As for the actual lobbying—well, I am no scholar of political wording so I couldn't even say exactly what it was we were lobbying for in the terms we were to use. I just had to basically tell our representatives what Fragile X Syndrome is; how it affects not only my children, but me and my dad and my aunt, and my cousin; and why I am all the way in DC lobbying for the ABLE Act and increased funds for FXS research. I left all the political jargon for them to read in the papers that we were given to give to them. Ya. Anyway, so don't ask me to tell you the down and dirty, I can just skim the top in my own words—if you don't like it then here is a letter of the political talk that we were skimming over: I am writing to ask you for your support for an increase in funding and resources for Fragile X-associated disorders. In particular, I ask for your support for four requests which I believe would have a profound impact on the Fragile X community.

- Appropriations Report Language requesting that the NIH:

Support continued implementation of the recommendations outlined in the NIH Fragile X-associated Disorders Research Blueprint as well as increased NIH support for the Fragile X Clinical & Research Consortium. Enhance its efforts across its Institutes to translate basic science findings into viable treatments for Fragile X, and encourage clinical drug trials for this orphan indication. Maximize Fragile X resources by ensuring that appropriate resources and direction is provided to implement the objectives outlined in the Fragile X Research Blueprint.

- $2 million in new funding for the National Fragile X Public Health Initiative and other CDC activities such as collaboration with the Fragile X Clinical Research Consortium.

- Support the addition of Fragile X-associated disorder among the list of eligible healthcare conditions for targeted biomedical research funding though the U.S. Department of Defense

- Co-sponsorship of ABLE Act.

Currently, Sens. Stabenow and Isakson are circulating a sign-on letter that will be sent to the Appropriations committee later this spring asking for support of these important initiatives. I ask that you give these requests your consideration and support when the letter comes before your committee. Additionally, I am requesting that you cosponsor the Achieving a Better Life Experience Act of 2009 (ABLE Act) (S. 493). This important legislation would give families of people with physical, cognitive, or developmental disabilities access to saving that everyone else enjoys through the creation of a disability savings account that would accrue interest tax-free. In summary, please support our FY10 Appropriations Requests, and cosponsor S. 493 (introduced by Sens. Casey, Hatch, and Dodd).

The Library of Congress was amazing. Not only because of what it housed there, but, also the architecture! Beautiful. One of the neatest displays, I thought, was Thomas Jefferson's Library. I could have spent hours browsing the titles of those old books--it was amazing!

This is me in the cockpit of the airplane when we landed back home--ya, I know, so cool!

You really should check out what Glen Beck has challenged us all to do. It's really cool no matter what your political party. The 9-12 Project

OK, so now for life here at home. I am off my political bandwagon and I am officially on the home front now. Little tidbits:

3 Loves to walk around the house with her little floaty/intertube thing on. (Sorry, no pics for this--but I will get some.) Ya, it's one of those ones that they can sit in at the pool. She runs around the house in it! It is really funny when she rounds a corner and bounces off the walls. Man, she is full of raw energy. As my dad says, "she make the energizer bunny look lazy."

We went to a local Rock and Mineral Show. Ya, I know, it sounds like a lot of and minerals... let me in, let me in. But, actually, it was AWESOME!!!! Seriously, it was amazing. It was huge for one thing, I couldn't believe how much was there. It was just me, 3, 9 and 17 because 13 and Marc were out paintballing. Anyway, we saw fossils, crystals, gold, silver, turquoise, geodes so big you could put your whole arm inside, rock lights, dinosaur bones, shark teeth, jewlery (mine and 17's favorite part). 3 and 9 were in heaven! Rocks everywhere! Rocks they could touch, rocks shaped like eggs, rocks carved into horses, rocks so thin they couldn't touch them (cause I know my kid's luck--or should I say lack thereof). Well, there were a lot of people there and soon my little FXS kids got a little overstimulated and we had to leave. But, of course we couldn't leave there without buying the red cherry soda they had in a can for a dollar. I only had one dollar left after spending $5 on rocks! so 3 and 9 had to share. We had to stop and see the Stallion show that was also there. 3 was so excited she started running with the soda in her hand. Well, being the good mom that I am I didn't want her to spill it on herself so I told her to hand it to me. Well, of course a 3-year-old isn't going to stop running to do the handover. SPLASH!! all over my white capris! Ya, I hope Shout can get it out!

9 is so funny. He keeps saying phrases like, "Absolutely, definitely not!" "Good grief!" "Excuse me, I don't think so." "I think that is just too hard for me, maybe later." and other things, he comes up with some big words and he always uses them in the right context—he is going to grow up to be a great speaker one day.

17 was asked to Prom by a good friend of hers. She is so excited. And we borrowed a neighbors dress. She is so excited--she loves dressing up. She gets to go to Disneyland for choir tour this week. I will miss her but, I am excited for her. Oh, how I LOVED Choir tour when I was in high school.

13 was in the Piano Festival at UVU and received a "Superior!" That is the best you can get! Yay! He did so well. I am so proud of him--he really is developing his talent. He also got to go with Marc to work for his school career day. He had so much fun!!

Marc and I went to celebrate our 13th anniversary. We had so much fun. It was very rejuvenating. I am so happy that we are married forever. I seriously thank my Heavenly Father for him everyday. We have made a good life together.

I am still in to process of planning the Statewide FX Seminar. That has been and undertaking and a half! But, hey, with the Lord's help I am moving forward. I seriously wouldn't be able to do anything without Heavenly Father's help. I have learned the hard way to never forget to say my morning prayers and to always keep a prayer in my heart knowing that I need guidance on some of my bigger struggles and decisions. I sat in church yesterday thinking about how grateful I am to be a member of the Church of Jesus Christ of Latter-day Saints. Family is so important—I love the counsels that we receive about raising righteous families. We are so blessed.

2 remarks:

Rochelle said...

We went to that Rock show too:) How fun. Great post! So fun to read and see all the pictures!!

wendy said...

Did you stop to breath when typing this post? I bet your hands got cramps. I loved all the pictures and info. I don't think you would be able to cram one more thing into your life. Is it possible? I'll bet knowing you, you will try.