Monday, March 30, 2009

Tour Bus Hits Semi

Just in case any of you watch the news in the morning and know that 17 is coming home from Choir Tour — I'm just letting you know not to worry. She is fine. The weather has been really bad and they were supposed to be home at 7am this morning. She called at 4:45am to let me know that their charter bus had just hit a semi. There were 5 that went to the hospital but she wasn't one of them, thank goodness. The semi had lost control and rolled and their bus side-swiped it. 17 said that there was glass all over her but that she was fine. They are now at an Armory in a local town and are being fed and taken care of there while they wait for their new charter bus. Just wanted to let you know so you didn't have to hear it on the news the way her grandma did... sorry mom.

Sunday, March 29, 2009

A Munchkin Mayor

So 13 is in for sure! Yay!!! All the youth that were called back are in the play as munchkins, but, we are still waiting to hear if 13 is going to be the Mayor of Munchkin Land or the Coroner (You'll have to watch the Wizard of Oz to get what I am talking about). Anyway, 13 is not too sure about being a munchkin but, we will see what happens. I thought he read the perfect part as the mayor—he really is good at this stuff!

As for me, I am not too hopeful. I think I am too tall for any part—actors are usually on the shorter side and I think my height may have thrown me out. But, I sure had fun reading for the part of the Wicked Witch of the West—that's what they called me back for. I had some great compliments after my reading, but they also had a lot to choose from and I am a newcomer so in a nutshell I am not expecting to get a part. But, who knows, they said the will be making the calls this week to let us know...

OK, so there is the update for now.

Friday, March 27, 2009


Yahoo! I just got a call that 13 and I are to go tomorrow for callbacks! Woo Hoo! Wish us luck, I read at 11:30 and 13 reads at noon!!!

Thursday, March 26, 2009

Wizard of Oz

13 and I auditioned for The Wizard of Oz for our local community theater. 13 did SO INCREDIBLY WELL!!!! I mean he blue them away with his "Close Every Door" from Joseph and the Amazing Technicolor Dream Coat. I am so dang proud of him—wow! He did so well!

So here are the parts we hope we get to play. I want to be the wicked witch of the west (because you all know I have a great cackle!) and 13 wants to be the cowardly lion. (smile) Check out the pics—I think we would be perfect!

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.

Tuesday, March 17, 2009


So the Daily Herald published my article. They chopped a lot of it out, but, hey, it's in there. One more way of bringing awareness to Fragile X Syndrome. Read it!

Monday, March 9, 2009

Lucky Thirteen!!! Oh, yes it is!

OK so I have so much to tell all of you about my DC trip and what it is like to be back after being gone for 5 days... but, first I must post our Thirteenth Anniversary! I thought it would be fun to post picks from when we were dating up to now. It is kind of fun to watch the hair and wardrobe changes—when they say "life is a stage"—they weren't kidding. I think there were I few times I needed help in the wardrobe department. Have fun laughing at us and remembering with us. This was fun to look through these pictures and remember all that Marc and I have made it through together. I am SO thankful for these past 13 years—they have brought happiness, trial, surprise, grief, excitement, and most of all LOVE.

I love you Marc!!!!

1995 Dating — my friend, Mary, took this picture at her house when I brought Marc over there to meet her. (Thanks Mary)

1996 Engaged — this picture was taken out at my parents house. (Ya, check out the big shoes with the tights and skirt—you've just got to love the 90's)

1996 Engagement pictures (this is from my wedding scrapbook--ya, I know...)
My mom drew this caricature of us for our engagement announcements. Tee hee!

Mmm, you just can't go wrong with burgandy and forest green for your wedding colors....

1996—our first "family" picture

2000 — finally, our long awaited, first child (9)

2001 winter

2001 fall

2002 spring

2003 winter (Bryan and 17 came to live with us summer 2002)

2004 Spring

2004 Christmas (13 came to live with us in November 2004)

2005 fall (3 is born and now we have five kids!)

Spring 2006

Summer 2007
(Bryan is gone living with his grandparents so now we are down to four kids)

2008 Winter

2008 Fall

And the most recent picture of Marc and I together...

We really love eachother!

Thursday, March 5, 2009

My Tourist Experience

Here a couple of pics in random order from today.
in front of the White House

in front of the castle

yesterday with Congressman Matheson

Ya. For all you asked me to take a picture if I saw President Obama---this is the best I got!!!
OK, for a quick run down of what I did today I will give you the list:
Smithsonian Air and Space Museum--where we saw the Apollo!
Hirshorn Museum--where we saw a very huge sculpture of a man
Smithsonian Castle
Edin Gardens
Carrousel at The Mall
Franklin Delano Roosevelt Memorial
Abraham Lincoln Memorial--that was unbelievable!!!!
Washington Memorial reflecting in the Reflection PUDDLES!!
Veterans Memorial--from the bus
Smithsonian American History Museum--we didn't even get to see all of it--but it was still awesome!!!
Ford's Theatre and Peterson House--we weren't able to into the Theatre when we first got there because it was closed until 4pm so we went over the Peteron House while we waited
Madame Tusaud's (actually just the entrance because I didn't have the money to go in--so I got pictures with the wax figures what were there in the front)
The International Spy Museum (gift shop) we didn't want to pay the fee :}
The White House -- where I got repremanded by the secret service (with a strong lisp, mind you) for stepping onto the road...
And then back to our hotel to snack, veg, hot tub and watch American Idol!
Just a flash back of our trip to the International Art Gallery. When I went to get my picture taken by the Daniel and the Lions Den, the security guard yelled at me to get away because it is "real...old art..." Gee, now I am an official hick from my town!!! Don't I make you proud? I mean who would have thought that they would have real and old artwork in an International Art Gallery!!!!!

Wednesday, March 4, 2009

Tourist Delight and Lobbyist Fright

OK, yesterday we got up early and went to the International Art Gallery and the Smithsonian Museum of Natural History! Wow! I mean wow!!! To see original, paint-layered-to-texture-originals, was an incredible experience!! Rembrandt, Van Gogh, Monet, Van Dyke and so many others! Not to mention the beautiful sculptures and the flowers gardens and water falls in between each gallery. Oh, indescribable! The Natural History Museum is awesome. I saw some really cool stuffed animals---no not toys--the real deal. The elephant, giraffe and walrus were my favorite, but, the hope diamond was quite a novelty! Then we went to a 4 1/2 hour meeting to learn about how to lobby for Fragile X Syndrome. For me, being a first timer, I was very interested--I learned a lot. But, for me, the best part was when Mississippi Congressman Greg Harper. Why was that so important? Well, he has a son with Fragile X Syndrome so he knows how we feel. And he has made amazing progress in getting the word out to the House and Senate here in DC! He was interviewed for an hour for an article on his son and Fragile X that was published in the newspaper "The Hill" which is a newspaper circulated only on Capitol Hill. We then went to dinner in groups and had a good time socializing and comparing Fragile X stories. The dinner I ate wasn't so good, but, hey, the company was good. Then we got up this morning at 5:30 am (and that is after we were up until 12:30 being goofy) and got everything packed and ourselves ready, ate breakfast and were in a cab by 7:15 am to get to the capitol by 7:30 am for a FXS group pic on the steps of the Capitol. Then Congressman Harper joined us for pictures and we got a private tour of the Capitol--but, the coolest part was sitting in the seats that the House and Senate fill on The Floor--you know the one you see on TV where the President gives his address... ya, really cool! then he took us to the Hall of Statues, the Crypt and the Rotunda. Wow!!! Then we were quickly off for our first appointment at 9:15 am with Congressman Matheson. He was awesome and we think he recieved our lobbying well. We got a pic with him. Then we went to Congressman Chaffetz office a little early for our 10:30 appointment. We only had a meeting with his communications director/legislative aid, but he just happened to walk down the hall and saw us out there and wanted to meet with us personally and hear our cause--he is such a great guy--we were really impressed with his desire to hear our cause and his seeming support of it. Then we ate lunch and went on to meet with the Senators' aids and that went well. We were very tired physically and mentally--it's a lot of walking and a lot of nerves. We also had time to hit the Library of Congress--awesome!!! I mean it was awesome. We were able to see the special displays of Jefferson's Library and Lincoln's display. We are thorougly worn out and are ready for our big tourist day tomorrow.

These pictures are in ramdom order. Burgandi was good enough to let me steal her laptop for a while as I tried to load all this and I am not great on laptops or PC's so this is what you get:

Library of Congress

Hall of statues--yes, that is the real me--not a beautifully sculptured statue molded to look like me!

Kathy, Burgandi, M, Congressman Chaffetz, and me

Hope Diamond

Me kissing and otter! (smile)

me and the giraffe at the Natural History Museum

the walkway between the East and West art gallery buildings

Elephant at the Natural History Museum

DANIEL and Rachael in the Lion's Den...