Saturday, March 30, 2013

Climbing, Chasing, and Hunting

I know, I get worn out just reading the title.

I LOVE to rock climb. I got hooked on it as a teenager, and by "hooked" I mean, I only did it a handful of times but I fell in love with it and wished I had more money to make it a sport of recreation more often. Marc and I went twice when we were first married and Marc wasn't as sold on it as I was, so we found other things that we both liked. Would you  have ever guessed that we were big backpackers during our first 3 years of marriage? Ya, we've had some little adventures.

Well, we went rock climbing at and indoor climbing center for our date on Friday.



It. Was. So. Much. FUN!!

I was only able to reach the top a total of 3 times and belayed Marc at least 5 or 6 times and my arms were limp at my sides like wet noodles. Noodles, I say, wet, overcooked spaghetti noodles.

I am out of shape, but I guarantee I will get into shape for a new love. Marc is hooked too, so this is the sport we can do together. I can't do basketball and volleyball anymore because of my back and knees but my arms are still good and climbing is going to be my sport! Yes! It's such an adrenaline rush and I am excited to have a sport to do with Marc again, and on my own with friends.



After getting home and getting the kids in bed we watched "Chasing Mavericks" with Gerard Butler. Yep, I am a Gerard Butler fan. I am also a surfing fan and so is Marc so we have been excited to see this movie. We don't get to the theater often so the DVD player is our friend.

This movie is based on a true story. I love movies like that. This movie, was so good. I just loved it. The surfing in it is awesome, the love story is sweet and the lessons are memorable.

We loved the movie so much that we brought it to the family Easter party to watch with everyone.

Yep, that's where the hunting comes in. We were hunting for candy and Easter Eggs in Jessie's back yard. It has been a tradition for, I think, 9 or 10 years now to gather at Jessie's before Easter for the hunt and the dinner. We always have fun, and this year was no different.

Coloring eggs and playing a little basketball shoot were a few of the highlights of my day.


Here are some of the eggs the grandkids colored. They were having a blast. Brother made sure to inform me that he likes to color eggs but not eat them. Baby enjoyed stirring hers in the liquid so she only ended up with one when she finally got bored of it and ran off. Hers is the bright red one on the top left.

Sister had just as much fun dyeing her hands as she did the eggs. I wish I would have had a picture of her bright blue fingers. But, after Jessie did some searching on the internet we tried Whitening Toothpaste and it worked! We only had to repeat it once and it worked like a charm. So if any of you mothers are worried about sending your colored fingered children to church tomorrow, try the paste...
I love coloring eggs. Love it! I have to try very hard to let the kids have all the fun,
but I have to at least do one each year. So this was the one.
Then is was the basketball shoot in the basement. Sister was VERY excited about making her shots!

Marc kicked my butt, but I was giggle the whole time... did I just say "butt, but?" ... yep, I did. Hmmm. Kinda funny...

Well, after all the fun we had this weekend this is how I feel now.

This is Sister  this past week. She loves to read. This day, reading must have been very hard work. She just laid down right on her book and took a nap. I put the blanket on her to keep her warm and so that she would sleep longer. She's so quiet and un-mischievous when she sleeps... I know... that makes it sound like a bad mom, but hey, she was warm and I got dinner made early.

Monday, March 25, 2013

Baby talk

It has been such a thrill to not only hear Baby's voice but to hear her voice making sentences and singing songs. She started making requests a couple of months back and then it stopped. It started back up again these last 4-5 days and it has moved to full sentences, "I want mlk." or "Give me that." I love it!

I always want to record it but, then she'll stop as soon as she hears the camera beep. Tonight I actually caught her while she was busy drawing pictures with Sister.

It's a bit long (5-ish minutes) but you'll hear her sing, say what I ask her to say, and, towards the end, say things on her own.

This is a big deal around here so I just had to document it.

I also post this video hoping it may give another Fragile X mom out there hope for her daughter who may not be talking yet.

Enjoy.

New Project 3 from Rachael on Vimeo.

Saturday, March 23, 2013

The little things...

You know it's the little things in life that can make you happy.

Finding out that they make dark chocolate Cadbury Mini eggs and having your dad share some with you at a family dinner.

Getting to talk to both my sisters within the space of 1 hour because they needed me.

Having my sister-in-law call me to say they want our family to come visit them in Illinois for a week.

Having my other sister-in-law send me a picture of me making my nephew laugh.



Marc's mom and dad stopping by for a visit just because they are in town.

Seeing that my nephew, J.R., made a picture of him and Baby after she was born and his memory of her, as his Facebook profile picture.


My mom calling just to see how I am.

Friends texting to have their kids come play with my kids.

Clean sheets.

Compliments.

Sincere apologies.

Naps.

Hearing Baby say "Rachael" to get my attention.

Sister's hugs in the morning.

Baby's run (or lack thereof).

Brother's giggles.

Marc's kisses.

Watching snow gather in beautiful lines on my big maple tree in the back yard.

Young Women in the neighborhood who volunteer to be with my kids just to read with them or color with them, or just sit at the house while they sleep and I finish a movie at my friends'.

Being able to post all these little things to be remembered.

(smile)

Friday, March 22, 2013

From Donuts to Track in One Post

I'm writing earlier today just because I have to get this off my chest.

First I will start with Dad's and Donuts at Sister's School.

It was Dr. Seuss' birthday that day and Sister L-O-V-E-S Dr. Seuss! They had a Dr. Seuss Day all planned and she had all her favorite Dr. Seuss books in her backpack ready to go for the big day. She had been planning on this day for a couple of weeks. But, Dad's and Donuts Day was not on her plan so when Dad showed up that morning to read with her and have donuts she was upset that her routine, her plan, had been seemingly ruined. As Marc walked into Sister's classroom to get her for their time together, Sister coiled up at her desk and crocodile tears began to flow.

Sister loves her Daddy, but he was not part of the plan that day. Marc saw that his daddy daughter date was not going to happen that morning, gave her a sweet hug and kiss, wiped a few of her tears and left.

I am sure he cried some crocodile tears of his own as he drove off to work wishing that his life with his children was a little closer to normal.

Then comes my turn for Moms and Muffins at Sister's school. I had prepared myself for the worst, that Sister may not even want me there because it was not part of her daily routine. I took Baby with me and  we were off in cold of our Utah Spring to read and eat muffins with Sister.

I even had thoughts of bringing my camera to take pictures of the event. Sister smiling while holding her muffin and book. You know, the way you see other mothers do, or at least I do.

I walked into Sister's classroom with Baby in my arms because she was too upset that her routine of sleeping in had been interrupted and was too upset with me to cooperate and walk with me.

To my surprise, Sister grinned and giggled with excitement when I came in. I set Baby down to give Sister a hug. Baby assumed the "student" role and wandered about the classroom as if it was her own, so then it became a task to get Baby out along with Sister so we could have muffins and read. Finally with Baby in my arms and Sister at my side she bounced (literally) down the hall to show me where Moms and Muffins was taking place. She grinned and grinned.

She waltzed happily into the section of the lunch room where everyone was gathered. She smiled all the way up to the time of me informing her that "we have to wait here in line for muffins." Then it was as if switch was flipped.

"No. No. No. No. No. No. No," she repeated as she shook her hands nervously next to her face.

I asked, "Do you just want to read?"

She nervously and quickly found a spot on the stage steps and we sat and I read to her. The entire time I was reading to her she nervously scanned the room and kept her eyes on every new body that entered. I wrapped my free arm around her to give her some sensory input, love and reassurance. After a few minutes of her trying to do what was expected of her she started to nervously turn the pages before I was done reading them and telling me, "I'm done. I wanna be done. I'm done."

So we got up and walked back to her classroom.

She was not bouncing down the halls happily this time. She was scanning nervously, and kept her hands next to her mouth and kept hurrying me along.

When we got to the classroom Sister was immediately calmed. It was so interesting to watch how instant her mood changed just because she was back in her environment.

Baby wanted to explore the classroom a little bit and the teachers said we were welcome to stay a bit so we did, only because I wasn't ready to carry Baby out of the classroom kicking and crying just yet. My back was still sore from the last escapade 20 minutes before. So, for my own selfish reasons we hung around the classroom.

It was so interesting to watch how at peace and at home both my girls were in that classroom. It was like they were at home. Content and happy.

When it was time to leave I wrestled Baby's jacket back on, swept her up into my arm along with my purse and we were off.

As I was walking down the hall, I was in a bit of a daze. I just kept thinking, "This is my life. This is how it is." As I watched other mothers entering with their children for Moms and Muffins, ready with their cameras and happy, "normal" children.

I wanted to cry as I walked by all the artwork hanging outside classrooms, flyers advertising extra-curricular activities for gifted and advanced students, posters about goals for reading or math that had been achieved throughout the school.

I started feeling numb as Baby began to cry because of the wind in her face as we walked outside and her stiffened and fighting body as I folded her into her car seat.

I sat in the car with it running answering a text about Brother going to a track meet today with all the regular education kids and if I wanted him ride the bus to the meet with them.

Did I want my son to be with the regular ed kids on the bus? It hit me that this is my life. I have to answer questions like this.

I set me phone down and started to drive home with Baby still whining because I had taken her from the wonderful classroom.

My mind spun as I thought about my morning and how abnormal it is from other mothers this morning.

"HOOOOOOOOOOOOOOOOOOONNNNNNNNNNNK!!!!!!!!!!!"

I slammed on my breaks and was caught in a stupor as I looked up at a big yellow bus with a bright red flashing red stop sign to the left of me. The bus driver was yelling at me and shaking his hands at me in disgust.

I apologized through my window and waited there for the sign to be retracted and my embarrassment and dismay along with it.

It was only a block away from my house.

I pulled into my driveway embarrassed and ashamed that I didn't notice the bus sign. There were no kids getting on on my side. I know because I remember thinking, "Oh, this is the bus my kids would be riding on with their peers if there weren't in special ed."

I pulled into my garage and wanted to cry.

Instead I came into the house and decided to write about it.

And no, I don't have any pictures to show you from this morning's Moms and Muffins experience...

BUT, I will, by dang, get some pictures of Brother at his track meet. Now that is a happy thought to end with. He is on the school track team! How cool is that? I mean how cool is that?!

Thursday, March 21, 2013

Quirky, Sweet or in Between

I really don't know how to describe my family...

I'll just show you some recent pictures and let you decide:

Yep. That is a goat. That is my mom holding a goat. It is not a real goat. Oh no, that would be weird. It's a porcelain doll goat... Someone gave it to my mom. I mean, hey, you can't turn it down if it's free...

Aunt Chelsea reading to Sister. Sister LOVES to read and just can't get enough of it. Chelsea was a little surprised, though that Sister chose such a long book. But, hey, I wasn't complaining, it kept Sister busy for at least 20 minutes.

Baby was giving Uncle Joel and Jman lessons on her iPod. I wish I would have gotten a the shot of her holding his finger and making it do what she wanted on the iPod. It was a crack up!


So, have you ever needed a flash light and some lipstick at the same time? No? Well, then I guess you won't be interested in this gem my aunt received recently--lipgloss, mirror and light all in one! Bwa ha ha! There is a light in the lid of the lipgloss! Seriously! What will they think of next?!

And this little video gem is definitely one of those tie breakers. It was a video message my mom sent me while I was on my Advocacy trip.

video


Quirky or Sweet?

For sure it made me laugh!

Wednesday, March 20, 2013

The Man and the Mannequins

What do you do on your dates out with your spouse?

Do you plan something special like dinner and a movie?

Maybe a game and some ice cream?

Me and Marc?

Oh, we go to outlet stores and take funny pictures with the mannequins...

Tee hee! That's how we roll baby!

It's even funnier that they don't have heads...

OK, it's just funny anyway...

or weird...

however you want to look at it.

We had fun! And, I think, that's what matters.





Oh, and did I tell you that Aaron and Chelsea joined us on our creative date?

Aaron didn't want to be left out.



And Chelsea didn't want to be left out either.

No, that is not a mannequin in underwear behind them, it's a swimsuit. Sheesh!


Creative and spontaneous dates are always fun! I am just so glad that my hubby enjoys it right along with me. What a man! Love him!

Saturday, March 16, 2013

While I was gone...

Our kids were such good kids while I was in DC. Marc said time just flew by because of all the involvement with the kids.



I had all the meals ready in the freezer, meds filled, school and buses informed, doctor and dentist appointments rescheduled and a calendar all drawn out for Sister. So all Marc had to do was take care of the kids and he did a great job--he really is an amazing dad!

In fact, I was a bit jealous that he seemed to have such an easy time with it. I need as much help as I can get and still don't do all that I need to do. I had to keep reminding myself that I had most of the work done for him so that it wouldn't be as hard... so that is how I comfort myself when I think I can't quite hack it (smile).

I missed the kids.

It's so amazing how something so hard can be so dear to you. You know what I mean? Like after someone is not in your life anymore it is the little things that you miss.

It really missed hearing Sister's exclamations at every site we saw that was big or amazing. I love how excited she gets over the littlest things too, like just giving one of her favorite people a big hug. She does like this, stiff, happy, goody dance thing and it makes me giggle. I also really missed hearing all her mispronounced words. She has so many good ones and I never remember to write them down. I really need to make that a priority because stories like this one about the persimmon are always fun to illustrate.

Baby's squeezes were missed entirely, especially when my hives flared up the last night I was in DC. (Oh, did I tell you about my hives? Ya, that medication I started that I thought was a "good-to-go" wasn't so much. I got some pretty awesome hives, but luckily nothing as serious as it could have been, anyway...) I needed her love to give me comfort. She gives the best nose-to-nose and cheek-to-cheek hugs in the whole wide world and when she adds in some spit with the experience it just seals the deal! Ha!

Brother... you know it's funny... his smart alec remarks were actually missed a little bit. He has some pretty funny ones, like, "You're acting just like your mother!" or "Oh, I don't think so, missy!" It really made me miss him when I would hear some of the other young adults who were there self-advocating for FXS teasing others and joking around.

I saw a kid at the grocery store today while I was stock piling on apples, clementines (the new favorite) and chicken. He acted and looked just like he had Fragile X. I wanted to run right over and tell his dad, "Hey, my kids have Fragile X too!" I really do wish that I could do that and know it wouldn't offend anyone. But, I couldn't help but smile when he was sharing his opinion on ice cream with his older sister, he sounded just like my extremely opinionated FX son and I caught myself chuckling a little. I didn't want the dad to think that I was being insensitive or laughing at his son, so I piped up with a smile and said, "He reminds me so much of my son, the way he looks and acts and I couldn't help but smile." A few friendly words were exchanged and I still walked away wondering if this parent had ever even heard of Fragile X Syndrome.

Anyway, I don't know why, exactly I went off on that tangent, but there it is.

So with my final thoughts I will say this, Fragile X is constantly on my mind, 24-7, every second of each day. If I am not around it, I am thinking about it, if I am not thinking about it, I am seeing it, if I am not seeing it, I am hearing about it, if I am not hearing about it then I be at home living it. Maybe that's part of the reason I don't know how I would feel if there were a cure for Fragile X... I wouldn't know what to do with my life...

                                                                 Ha!

Thursday, March 14, 2013

Seeing the Sites of DC

This is why I wish I would have been able to blog while experiencing everything, because now all I want to do is just post the pictures so that I can move onto blogging about home and my kids and hubby. I hate playing catch up and love to talk about how I am feeling now instead of how I felt a week ago.

But, I am a mother, and all mother's know that we don't always get what we want...

So, I will do my best to give you a short summary or glimpse of what I was feeling by summing up in 1 - 3 words for each collage or picture.

Ready?

Cold and Windy
Mt. Vernon Sites                                                                 What Washington said



Cool old chairs

Tree along Potomac

Look up!

Onassis at Dock

Mt. Vernon pathway

Always ask your tour guide to tell you something they don't usually tell other people and you get to see stuff like the engraving of Civil War Soldiers North and South who came to Washington's tomb to etch their names in the walls as a tribute to what a great man he was. (I know it wasn't 3 words or less.)

Washington's Green House


LOVED Mt. Vernon

American & Natural History                                Arlington and Iwo Jima



And the last picture I wanted to share really isn't a good one. It's just one I knew Brother would get a kick out of. He is so intrigued by the Egyptians and Mummies. He watched a lot of Documentaries about them. So when I saw this I just had to seize the moment, just as he would have. Believe, me people were giving me strange looks as I waited for Tiffany to get a picture.

OK, so that's it. Well, at least what I am going to show you about my site seeing. I figure you don't need to wade through all the images of me standing in from of this or that.

Wednesday, March 13, 2013

Getting to Know the Missing Branch

How much do you know about your family?

I thought I knew a lot about my family.

I'm a Mormon, that's what we do, that's our focus: family.

Then, you put into the mix that I am a carrier of Fragile X Syndrome and the desire to know my family genealogy becomes a passion trying to find out where the gene came from and who it may have been passed to.

I am sure that anyone out there who has an inherited trait, like green eyes, red hair, freckles, long toes, big lips, or even long eyelashes likes to know who they inherited that from; Grandma, Aunt Lillith, Great Grandpa Gar. Heck, it's human to want to know how we became us.

So when you add an inherited mental impairment syndrome like Fragile X you really want to know where it comes from so that you can help other family members know about it too.

Well, I had an amazing opportunity being able to go with Tiffany on our Advocacy trip to DC because for the first 3 days we stayed with her aunt (my Dad's cousin), Peggy, whom I have never met.

Ever.

I didn't even know she existed.

Why?

Well, I won't go into it much but, let's just say that my dad's, mom's side of the family didn't have family reunions or really get together that often when I was young. So, I know names, vaguely and have heard stories of some others, but have met VERY few of them.

Here are the amazing views from the plane, me and Tiff excited to get there, and me on Sunday morning holding the family lizard, Geo. There's more of him below...

On Saturday night after our plane ride into Reagan Airport we rode home in a white, Chevy Traverse with a woman and her son whom I have never met or spoken to in my life that I can recall. Yet, she seemed so familiar to me. She had so many mannerisms and idiosyncrasies that were uncanny impersonations of my Dad's sister, Becky and my Grandma Vivian. I just couldn't get over it! It was so fun to just soak it all in and to meet her 4 children at home.

Her kids were so dear and kind to us. I could tell that they were so excited to have family there to visit them. We shared a lot of laughs, meals, songs, piano tunes, secrets, banana bread, memories, and even some tears. It was amazing to me that even though I didn't know Peggy, the fact that we are family tied us together and formed a strong bond.

Have you ever seen a lizard riding a Unicorn? Peggy's youngest daughter showed us the talent her pet has. Tee hee!

On Sunday we had so much fun going to the Great Falls National Park there in Virginia. It was beautiful! Tiffany and I were enjoying the company of all of Peggy's family who were there. We had fun just being... and the kids had fun climbing poles, rocks and fences. Then we went to see the Washington DC Mormon Temple. Gorgeous!

Peggy is in the top left of the collage and the kids throughout are her 4 sweethearts! And that sunset is over Great Falls.
I really wished I had my amazing camera, but my iPhone didn't do too bad and it was a lot easier to carry around.






My favorite pic of all of us trying to get in frame while I shoot the picture... priceless!

Like I said, my iPhone wasn't too shabby, of course the scenery couldn't look bad anyway.

That night we--Tiffany, Peggy and I--stayed up late talking about family that I didn't know very well, my Grandma Vivian's side. I heard so many stories I had never known. It was as if my Grandma was up in heaven listening in with me and smiling to see that I was finally connecting with her side of the family. It was such a neat and memorable night. As well it should have been, we were up until 3:30 in the morning talking, crying, laughing and everything in between. We were also very intrigued when we started to talk about where our Fragile X mutation started from and if it may affect others in our family line who may not even know about Fragile X Syndrome. You see, my Grandma Vivian and Tiffany's Grandma are sisters (and Tiffany's grandma is Peggy's mom) so that is the reason for our interest and desire to find out more, wondering if any other siblings my be carriers in the family and if there is anyone we need to reach out to. There is a branch on the family tree that kind of fell off the radar for many and none of us really know them very well. But, it has been very interesting to watch all the doors that have been opening up to us, especially with the research on Fragile X being done here in Utah. I know there is a reason all of this familial connection is coming to our awareness now, there are answers that can be given through this gene that has been passed on.

It really is a blessing to know your family genealogy and where you come from, it gives so many answers to questions you may not have known you even had.

It also gives you a sense of where you belong in this universe and helps you realize the friends you already have and just had to get to know. For instance, the friendship I have built with Tiffany, my second cousin that I just met a year ago, has come so naturally. They time spent with her for 6 days was such a treasure and a blast! I can't even begin to tell you how much we are a like, yet how different we are and still have a strong relationship as friends and cousins! Awesome!

Anyway, it was a true blessing to meet Peggy, her hubby Ken and there 4 children still at home. I am so excited to see them again someday and hope it will be sooner rather than later.

On our last day together before going off to our advocacy training we had the opportunity to go to the Iwo Jima Memorial... A M A Z  I  N G!!! I cannot tell you the patriotic spirit that emanates as you stand there looking at that incredible sculpture.



I also loved what it says at the base of the statue: Uncommon Valor Was A Common Virtue

Valor. Courage in defense of a noble cause.

Only one small view of Arlington Cemetary, it is massively huge...

Then, we went to the Arlington Cemetery and then on up to the Tomb of The Unknown Soldier. We just happened to get there at the time of the Changing of The Guard. It brought tears to my eyes as I watched the reverence and dedication that is involved in the symbolism of guarding a tomb that represents so many fallen soldiers who have not been named or found. Truly a patriotic and humbling experience.





That is one thing you realize while at Washington DC and seeing the sites is the patriotism that you feel for your country.

I feel that the importance of family and your dedication and devotion to family is so much like patriotism. We'll do whatever it takes to care for and defend our family. Is that not what our soldiers have done and do for our country.

I hope we never lose this branch of our country's tree by not knowing the sacrifices that have been made from the beginning to bless us with the country that we love.

God bless my family and God bless the USA!

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:
Advocay
Family
Site-seeing

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.