DC Trip

I had the extreme priveledge of attending the National Epilepsy Foundation's Walk for life and Public Policy Institute. We visited Utah's senators and two of our representatives. We also spoke in front of all the President's of the State Epilepsy Foundations. It was an amazing experience. We also got a little bit of site seeing in while we were there. So warning there is a lot of photos attached with this blog post.

The day of the walk was rainy and muddy. Margo ruined her shoes in the mud. But it was really fun. We walked with over 5000 others for epilepsy awareness. We started the walk just below the capital and went down and around the Washington Monument and back. The total walk was a little over 2.25 miles. I am not use to walking that far by the time we were done with the day we had walked over 5 miles. My legs hurt so bad.

After the walk we took a tour bus around to Arlington. I learned so very much. It is so inspiring. All of these amazing men and women who have given their lives for our freedom. We saw the women in the Military exhibit. I learned a lot about the WASP group from WWII. They were a women's pilot group there was a little over 1000 of them. Margo's mom happens to be one of them. They did this amazing triute to them. These women did amazing work. They weren't even recognized for VA benefits until 1977 or were made officers. They weren't even brought home when one of them died in duty. All the women pulled their money together to get the body home to be buried.

This tribute was really nice. If you ever get to Arlington I suggest you take a few minutes to visit this. Then we went to the Tomb of the Unknown Soldier. I was so amazed at the reverence and awe that was there.

We traveled to the White House visitors center and went back to the hotel. We were incredibly tired. Sunday we did our speach in front of the president's and exec's that were in. The speech went well. I was excited to have it over. Monday we spent the big part of the day in meetings. We learned a lot. Near the end of the day we skipped the talks about how to talk to legislatures (we figured we knew how to do that) and went site seeing. We went to the Jefferson Memorial, Roosevelt Memorial, Lincoln Memorial, Vetanam Memorial the WWII Memorial. Around where all the memorial are the Cherry Blossom Festival was going on. It was amazing. I took over 100 scenery photos mainly of the flowers. The photo of me has the Jefferson Memorial in the background.

Now that this blog post is getting even longer. Tuesday we had our meetings up at Capital Hill. Believe me it is a hill after all the walking we did. We met with three out of the five Senators and Reps offices. We dropped info off at one other. I was really impressed with Jason Chaffetz's office and staff for being the new guy on the block and not being on any health committee's they were really receptive. We met with Orrin Hatch personally. Well at least long enough for the photo op. His office staffer was amazing and commended us a lot on the bill we passed in Utah.

Wednesday was our travel home day. We had a breakfast meeting with people from the National Epilepsy Foundation. I was excited to be going home and my kids couldn't wait. Although they were spoiled by Grandma so I am suprised they wanted me home at all. Erik did a great job will I was gone. I am really proud of him. We ended up being delayed in the airport for a while and it took a lot longer than it was suppose to but while it was storming on the ground I took this photo above the clouds over DC. It was a beautiful site. I am really shocked that the photo turned out. Now I just have to get back into the routine and on the right time zone.

Crop Days are over, well for this year

I have been really blessed with a wonderful crop committee to help with all the craziness of crop every year. Like previously said I was on KUTV news early in the morning. Clarissa and Laura came to make sure that I looked okay and everything went well. Laura ended up being dragged on camera. I don't know if she has forgiven me for that yet or not. The night before Clarissa and Laura took me to the mall and put me in a dressing room to try on clothes so that I didn't go on camera in my old cumfy jeans. I have to tell you it is really a good idea to take some of your best friends shopping. I remember why I use to like shopping. They are totally honest about what looks good and what doesn't we had way too much fun! We had tried a few of my local favorite stores and hadn't found anything that fit what I was looking for (not to menchion my big rear end). Clarissa bought me new jewelry so that I would feel cute! With Clarissa's and Laura's help I got a new outfit and looked okay on camera so I hear. I still haven't seen the tape and I am not sure I really want to.

Bethany was my crop co-chair this year. She is amazing! I love and appreciate her so very much. I have been blessed so very much by wonderful friends that surround me in everything and Bethany is one of them. (Not to leave out anyone else). Bethany not only watches my kids while I work a couple times a week I rely on her for so very much. My mom keeps telling me not to take advantage of her goodness. She even put up with me not wanting to give up my registration job for crop. I keep over booking myself with crop and when she said she would do it I thought great. Although it was easier said than done. Giving up my job of 7 years was really hard. She even put up with that stress without killing me. She is expecting her 5th child in June. I can't wait to spoil another one of her kids! This isn't a great photo of me although here is Bethany and I with our cute flowers from Jenn. After I took of my cute necklace (sorry Rissa), also I want you to look it was near the end and my hair is still curled!

I haven't gotten the photos from Laura yet I will add more as I receive them! Thank you everyone for your support. It was so neat to look around and see so any of my friends and family there supporting me. I couldn't do this without you.

Crop Because You Care

I am really hopeful that one day my life will calm down. For now this is what I have been spending every spare minute of the day on. So please come and join me.

8th Annual

Crop Because You Care

Utah's Premier Scrapbook Event for Charity

Crop the day away and enjoy food, games and prizes. There will be gift bags for the first 300 registrants. Enter the raffle for a chance to win a get-away-weekend, bid for custom projects in our silent auction, as well as lots of other fabulous prizes!

Cost is $29.00 pre-registered -or- $35.00 at the door

Saturday, January 31st

10am to 10pm

South Towne Exposition Center

9575 South State Street, Sandy

You can register or print out forms on-line at www.epilepsyut.org.

Registration will close at 5:00pm on January 30th.

All proceeds benefit the Epilepsy Association of Utah

UEA booth

I had the great opportunity to attend UEA and have a booth with the Epilepsy Association. I had a wonderful time. Although it has been a week I am still feeling a little run down from all the work that went into the booth. I learned a lot and we are invited back for next year. I really think that next year I will do things a little bit different. I was so grateful that I attended. I had an opportunity to talk with some amazing people. We didn't give out as much information as I would have liked to. Although we booked many seizure information classes and I hope we will boost the attendence for crop and the conference from all our advertising. Even if it doesn't, if all of our work helped one person handle a seizure properly than it was all worth while! Plus we are ahead of the game for next year! Thank you to all of you who helped make it possible. I love YOU!!!

Scrapbook Expo

Bethany and I spent Friday night at the Scrapbook USA expo wearing these horrible tee-shirts I made that had our Crop Because you Care info on them. I only could get these fitted tees and they were HORRIBLE. The expo won't let us advertise there due to that fact that they say we are competition. I don't think we are at all. CBYC is nothing like the expo but whatever. Anyway we wore these horrible tees to advertise for crop and we got vendors info! I think it went really well. Bethany and I had a great time.

Due to the bad financial position we have been in I didn't want to spend anything. Although that didn't happen. But to my defense. I now have Christmas presents done for 5 of my family members. Two of which I had no idea what in the world I was going to do. I also spent $10.00 on lettering for my walls! I could have made them but not for this kind of cost. I bought 4 saying and each of them had stickers on them retailing for $30.00 a piece. I felt like this amazing super shopper. Bethany wasn't much help egging me on to purchase the things I wanted. In all fairness I wasn't much help for her either. I gave in most of the time although I didn't on others. When all was said and done I bought 4 wall sayings and 5 christmas presents! If you take those out of the mix I only spent $9.50 on stuff for me! I was so proud! We were there until midnight then we went out and got food so I was up way late. I don't do late nights as much any more. I am getting to old to stay out half the night then function the next day. But I had a great time! Thanks Bethany!!!

Camp Spike and Wave

This week is the annual Epilepsy Association camp. This year Kimmie is old enough to attend. Due to the Chicago trip and her getting worn out so easy lately we decided to have Kimmie attend the first 24 hours and the last about 18 hours. I have to work the camp anyway so it wasn't a big deal for me to be there in case of any problems.

My big suprise is that I can't believe how much her balance improved again after horse back riding. She was only on the horse 15 - 20 minutes. Her balance improved tremendously. We took her riding about five years ago once a week to help her walking. It made a major difference. I can't believe just how fast she took to it again. She got the chance to ride a horse that she rode all those years ago. We stopped taking her due to lack of funds. Although I am thinking I will have to take her again even if it is only for a session or two a year. She was absolutely amazing!

Thoughts

Today I am working on my newsletter for the EAU. I always put a cute thought or quote or something on the back page. Today I am having trouble finding something that really fits for the EAU this quarter. But I have a few quotes I really like that I wanted to share. So I thought this would be the perfect place....

There are no classes in life for beginners: right away you are always asked to deal with what is most difficult. - Rainer Maria Rilke

Ability is what you're capable of doing. Motivation determines what you do. Attitude determines how well you do it. - Lou Holtz

Even miracles take a little time. - The Fairy Godmother (this one is for Kimmie)

I think I will use the second one but I really don't know. What do you think???

Bill Signing

Thank you again to everyone for your help with the epilepsy bill. The governor did a ceremonial signing last week. Here are a couple photos (thanks Marisa).

Personal Talk

Yesterday I did a scary thing. I was asked to speak to a group of researchers at the University of Utah. I thought okay I can handle a talk about epilepsy. I have done them before. Although I have a few board members that take care of that for the most part but I can handle talking about epilepsy. The doctor/professor that asked me said he was interested in sharing personal stories of epilepsy to show the researchers that what they do makes a difference in the life of real people. I first thought, personal story I have a lot of those about seizures. I can handle telling a story or two. The doctor sent me the format of the class and how long he wanted me to talk 15 minutes. That is a talk not just a few stories. So I started on my journey to write a talk about me and my experiences as a wife and mother of individuals with epilepsy. Someone once told me I needed to write a book about epilepsy. After my experience in the last three weeks preparing for this I don't think I could do that. I put together some photos and put it in a PowerPoint presentation. I wrote everything down and shared my speech with Erik. I had a total of nine minutes. I thought I am going to be scared and talk too fast I will be done with this in 5 minutes tops. So I add things to my talk hopeful to make my talk about 10 minutes. I had trouble putting everything together in the first place because it was all personal. Seeing the bad days Kimmie has had and putting them on the big screen is scary and emotionally hard.

I walked into work yesterday I thought I was already to leave for my speech. I though I can handle this. I went into Mom's office and she said, "do you know you have a stain on your jacket?" I thought no I look cute! I tried fixing it although to no success. It was only about penny size so I thought I don't care no one will see it any ways. I figured that I must not have looked cute or the stain must have been worse that I thought, because Mom handed me her JcPenney's card and coupons and she told me to go buy something to wear. The condition was that I threw away the outfit I was in (it was a hand me down from her). So now I have a complex, I thought I had it all together and now I look retarded and need to buy new clothes because I don't have time to go home and change. Great this is starting out really well.

With my new shopping trip I arrived a few minutes late (as usual) I had agreed to met another gal from my board 45 minutes before we spoke. I was glad for the extra few minutes. We still ended up sitting for 20 or so minutes before the class started. It was only the perfect amount of extra time I needed to completely freak myself out. I learned that not only researchers, but staff and neurologists attend this class. So there went a class from 20 max to 45, plus people that are a lot smarter than I am. The doctor that asked me to help told me not to speak on anything like our bill or need for research or anything like that because these people know that they just need a personal story behind it. So I scratched through my extra stuff. I am grateful that Margo went first. I really appreciated the extra time to calm down. I thought as I stood up to talk well at least I have a new outfit and I look really cute.

I started and something fun happened. I ended up not really using my notes I just talked. I ended up talking for 20 minutes. Then students started asking me questions. I didn't know my life was interesting. I have a bunch of new volunteers and people that are really interested in what we are doing! I can't believe I have survived. I think I did okay. I started to get teary when I talked about Kimmie's six hour seizure. I saw three ladies in the room crying. I think that is a good sign that things went well. I have been asked back for other speaking things. I didn't plan on this being a thing although I think it was good for me to tell my story I think it also helped me emotionally deal with some of the things that have happened over the years.

Regardless I survived my first major public speaking event!

Legislation

With all the work that went into this legislation. I wanted to do a thank you dinner for those that helped out the most. So therefore we had an amazing dinner at Madeline's! This is a photo of all that attended!

Day at the Senate

Thank you so very much for everyone's support and letters to the legislature. I am so grateful! Our bill passed yesterday! I am so very excited. We are the first state to pass anything like this bill. Quite a few states have tried but Tennessee is the only one that has gotten close. It was rather exciting. I went up there first thing in the morning and I was there all day. We have had at least one board member there all day every day for a month now. We met with almost all the senators and representatives! We are soooo grateful that this passed. This is amazing. I feel like a lot of the things the EAU has done is one such a small scale and for the first time we were able to make a difference to people throught the whole state! They finished the voting and a wave of relief went over me. I just couldn't believe that this is going to be a law!