Thursday, March 27, 2014

My Second Take on Disney's Frozen

I know, it's out on DVD now so I'm sure no one cares what my opinion is on this movie any more but I am actually writing about it again for a whole different reason...

I got to see it with my daughters in the movie theater this time!

That may not seem very epic.

At all.

But for me, it brought me to tears.

Let me take you to the movie with me the day we went...

(dream sequencing clouds or flash-back twinkling)

I sat in the theater between Sister and Baby. Brother and Marc were the book ends of us three girls.

We, as an entire family, were sitting... yes, sitting in a theater.

The lights in the theater were up a little so it wasn't totally dark.

The sound was lower than usual.

We were surrounded by family and people who knew exactly what our life involves having children with special needs.

You see this wasn't just any showing of Disney's "Frozen." This was a special showing for children or adults with special needs that struggle with the "typical" movie theater setting. This was all about making the theater experience comfortable for them.

It was OK that Brother sang at the top of his lungs during Elsa's big song. It was OK that Baby had to run up and down the isle several times to get out the wiggles. It was OK when Sister got a little scared and had to leave and then come back in still a little nervous and making sure to loudly let me know.

We were all in the theater together.

My whole family.

I think the last time we did that was when Baby was like 6 months old. It was such a nightmare that we vowed to never do it again. We have cheated and did it a few times with family but I usually end up in the hall or at the front of the theater trying to chase Baby down while someone else is trying to keep Sister in her seat and calm her down so she doesn't totally freak out.

Not fun to go to the movie with my family.

It's kind of like going with three hyperactive 3-year-old triplets... it just shouldn't be done.

My cousin, Ryan has a son with Autism. He also runs a theater in Spanish Fork. He knows how rare it is for a family dealing with children with special needs to sit and watch a movie together at the theater. It's dark and ads to the overwhelming view of the larger-than-life screen with the sound blaring loud enough to affect anyone who deals with sensitivity issues. He also knows how important it is to have other families around who totally "understand" your child and aren't going to judge, mock or ask them to leave.

I am so thankful that I was able to be a part of this special viewing that day.

There was a point during the "Do You Wanna Build A Snowman" song that Sister was on my left side singing it almost word for word with a big smile on her face as she hugged her knees and then there was Baby on my Right side with her knees tucked underneath her and her sweet little face in her hands with her head tilted watching in complete mesmerizing attention. I looked at our masculine book ends and I started to cry. Was I really experiencing this wonderful activity with my entire family? I was so grateful for such a simple thing. I can't even get Sister to watch a movie with me at home. It was so fun to sit right beside her while she could.

And then there were the times that Baby and Sister would run the aisles, run to the front of the screen and squeal when they thought someone would catch them. Or when Brother took off his shoes and bounced up and down in his seat as he sang "Let It Go" with forceful vibrato.

No one judged us. Everyone was just enjoying the whole thing. The movie. The laughter. The singing. Even the kids who could hardly get enough of this fun experience.

So that is my second take on "Frozen." Nothing new to review as far as the movie itself goes, but just a magical experience that I will never ever forget.

I want to thank all the movie theaters out there that have these special showings for special needs children and adults. There are not a lot of them, but maybe, just maybe if they read this post there will more.

Oh, and just so you know, Sister has been singing that snowman song this entire week, she keeps saying "Hang in there, Joan." I think she was able to really connect to it in her own way. I am so thankful for the little blessings in Our Life.

This is some chalk art from a while back, but I wanted to have some picture to put up here :)

Just as a side note: Spanish 8 Theaters is having another special needs showing this Saturday, March 29th at 10:30 am.

Wednesday, March 26, 2014

Two Pictures and a Few Words

It was a crazy weather day in Utah today—cloudy, wind, rain, wind, rain, snow, rain, snow, hail, wind...

This photo was taken today during a cloudy piece of the day while the sun was starting to set in the West and radiate it's luminescent rays into the cloud filled sky.

I had to take my camera out just for fun.

This was the funnest pic I got as Baby looked at me when I called her name.

Pure bliss.

I love when my kids are this happy.

This next picture Marc doesn't like of himself, but I do. He was being really pensive and he just happened to look at me as I was sneaking a photo.

Just a simple post today.
Only simple words to say.
The pictures can show,
what you already know
and words can find their own way.

Tuesday, March 25, 2014

The Swinging X

Having a child with Fragile X Syndrome who has a constant need for sensory input is quite an exhausting challenge.

Really exhausting for only one of us though.


Or whoever else is helping Baby through her day.

Baby doesn't get exhausted at all. It makes her feel SO much better. It's amazing to see how much input she needs physically to get through an entire day without biting, hitting, pinching or choking someone.


So, with the help I have been receiving for Sister and the "extra" time is has given me, I spend many hours of my day dedicated to her sensory input needs.

I've told you about them before. Recently, in fact. So I won't get into the details of the squishing, rolling, wrapping, jumping, swinging, pillow fighting, and cheek rubbing... but I will tell you that it was quite interesting having to "squish" her in the middle of the Primary room on Sunday at church. When we first walked into the door while all the other children, parents and teachers were filing in she immediately saw the crowd and grabbed my hand and said, "squishies."

At first I was hesitant to lay on top of her while wearing my dress and tights in the middle of the room with many of the adults and children watching.

Then, it hit me, "She knows that she is going to be a bit overstimulated in here and she knows she needs so sensory input to help her through it. AND! AND! And she told me what she needed!"

There was no way I was going to shun her request. Those were huge steps for my little Baby.

So as she, with a huge smile and twinkling eyes, laid on the floor at the back of the room by the entrance to the primary, I, as lady-like as possible got down to the floor and laid on her and squished and loved her and we both giggled. I'm not sure what anyone thought of that... it's not often you see a mom laying on top of her small child in church... hmmmmm. It sounds weird when I type it here too.

Ha! Ha!

We both giggled.

I was proud of her for the request.

I was proud of me for not worrying about what everyone else thought.

Later that day as she was still needing some sensory input, I couldn't swing her with Marc anymore because my back just couldn't do it anymore. So, Brother volunteered to help Daddy swing her.

I was so proud of him wanting to take care of her and totally understanding her needs.

I remembered to take a picture:

Every parent loves to see their children truly treating each other like family.

But, there's just something about watching the older Brother with Fragile X Syndrome taking care of his Baby sister who also has Fragile X Syndrome and to watch him smile as he completely understands the help he is giving her.

I love these kind of moments.

Monday, March 24, 2014

Brother in The Men's Choir

I know I've posted many times before how proud I am of Brother for being in the choir. He has been in the choir now since 7th grade. He has always loved it. He thrives at it.

Well, I told you after Brother's last concert that his teacher, Mrs. S, came up to me and said he should be in the Men's Choir. I was so excited but didn't really think that a mainstream teacher would be willing to have a special ed student in one of her more advanced choirs.

I have been so excited to his first performance with the men's choir! I feel so blessed that 2 amazing teachers gave him this awesome opportunity.

He, as usual, yelled and screamed at me when I invited Marc's parents, and again when I invited my parents, but it didn't stop when I was telling him that Dad and Mom were coming to watch him too. That's where he blew a gasket.

I couldn't get him to change into his choir clothes. He kept yelling at us in the car telling us not to come in and whining that he didn't want his grandmas and grandpas there either.

It's really hard to keep a positive attitude and push forward to be a part of his life that he thinks, in that hyper-sensitive moment will kill him.

We've learned to push the envelope and when not to.

As Marc and I found our seats and saved more for our parents I could see Brother anxiously looking to make sure "his" audience was there.

He LOVES having us there to see him succeed. It overwhelms him at the same time. During his second song he was signaling to Marc to put his camera down and stop taking pictures. We laughed and did as we were told... for a few minutes. Then we filmed and clicked away as we pleased.

I wish that I had my good camera instead of just my point and shoot because I can't really post the pictures I took because of all the other kids in the background. But, I really wanted you all to see how happy and cute and involved he was so I'm just going to blur the others out...

He sang all 4 of his group songs without a hitch and as soon as it was over he jumped through the crowd and ran over to the where he knew he would see of us and hear our praises. He had a perm-grin and nothing we could have sad would have given him and more confidence.

Brother is in 8th grade this year. One more school year past. He'll be in 9th grade this next year.

I so hope that he'll be able to do this something in Choir. He's just such a sweetie.

Saturday, March 22, 2014

18 Years

Marc and I celebrated our 18th anniversary recently.

We kept it real simple because I had been gone to D.C. and we have some special plans coming up in a bit that we need to save our time and money for.

We just went and got some ice cream and then went for a little drive and then came home.

Nothing big.

But 18 years is big.

I sometimes, almost feel like when I tell young people that I have been married for 18 years it is the equivalent to someone telling me that they have been married for 50 years. "Wow! 50 years? That is amazing? What's your secret? When I say 18 years to some they look shocked. Then when they find out that all 3 of our children have Fragile X Syndrome, so then they start asking the questions, "What's you secret?"

No secret really:


Mutual respect.

Mutual trust.

Genuine care for each others needs and wants

Commitment, even when times are rough.

Keep Heavenly Father in your relationship.

And last but certainly not least...

You need to kiss and say "I love you," at least twice a day

We went and ate our cold ice cream by the cold fire, there at the mall.

I just had to get, at least, some shot of me enjoying the fireplace on a stormy night.

On our way home I just had to sneak one more memory. At a red light I took a picture of the two of us in the car.

I am excited for what we do have coming up in about three and a-half weeks. We'll have lots more moments like this!

Dad's Perspective

 I recently downloaded the pictures from Marc's phone.

I love seeing the pictures he takes.

He usually has such a different perspective of the kids than I do.

While I was gone to Washington DC for 4 days I guess Sister had learned that if she wanted something to eat, she'd better get it herself.

I guess she wanted to be a a really good sister and help the little sister get some lunch too.

She was quite resourceful and very creative.

She pulled out the left over pizza and gave to two pieces to each herself and her sister.

She got the left over shredded cheese and lettuce from the taco the other night before that... and notice that, I guess, she didn't think Baby had enough cheese so she just gave her the whole block. Tee hee!
  I hope that Sister is always this thoughtful with her friends and family.

I don't think Baby was all that impressed by the food selection, but I'm sure she was thrilled with the company.

Marc also gets pictures of the kids when they are just being silly goofballs... they love it, and so does he.

And boy oh boy is Baby a cheeser... as you saw above...

OK. That wasn't very funny.

Especially if you don't get it.
Of course Brother had to join in on the photo fun for a second. (
 Good heaven's Baby! Do you need some attention?
When Brother was ages 3 - 5 he LOVED to play in the water. That's an understatement. He dreams about it. If fact sometimes he has me so confused and convinced that he know SO MUCH more than I do.

Anyway, I guess Baby figured out the water stuff too. But she doesn't care if it's cool, clear water stuff, because sometimes there are dishes soaking in the sink or a sink of soapy dirty dishwater,

She just likes to make sure she has a cup to poor the water in and out with OR a wet rag. Uggh! The wet rag... that is a nightmare. She always has to take it all the way out of the sink and walk around the house five times before I notice that she's been dripping from her soggy mess for the past hour or so.
 I should have just lied and told you she's getting her own drinks of water fro the sink now... Nope, another failure

Sunday, March 16, 2014

Bug Eyes and a Frog Face

I was going to sit down and write a cool post but then I started playing with PhotoBooth...

Hope you have goofy dreams!

Ha! Ha!

So this is what I'd look like as an Animé character...

Brook Shields eye brows with a "Dopey" face

Igor from "Young Frankenstein"

I have always wished I had bigger eyes... but that's just ridiculous! I look like a cartoon character...

This last two are the "frog face" filter

OK, I'll get serious on Monday and post something for real (wink).

Thursday, March 13, 2014

The Farm and All That Came With it

The farm I knew was a 500 acre dairy farm in Benjamin, Utah.

But, it all started before that.

My dad and his siblings grew up on a family farm in American Fork Utah.

I've heard lots of stories about those days in A.F. (as they so affectionally call it).

My dad was the oldest and the more studious and observant one. He wasn't as involved in all the things that his brothers did when they were older but my dad can tell you all about his younger brother, Mark when he was little.

My Uncle Mark was my dad's first brother. My dad watched over him always.

Uncle Mark, Uncle Eric and my dad, James (photo of a photo)

Even though they weren't as close when they got older there was always a sense of stewardship from my dad to his brother. He was always so proud of Mark and his accomplishments and talents and truly wished the best for him. The farm kept them together, and sometimes for a moment would keep them apart.

When I was growing up on the family farm in Benjamin there were three brothers and my grandpa who milked the cows and took care of the fields and watering turns and we all lived in the 3 houses that lined the front acreage of the farm. We were neighbors, and in Benjamin your nearest neighbor was at least a half mile away unless you lived on our street where we were a hop skip and a jump away from Grandpa's and about 3 times that far from our Uncle Mark and his family.

My dad was the oldest and first married so I was the oldest grandchild. By the time Uncle Mark had a family their first born, Jill, was about the same age as my sister and my two brothers were close to their next two sons and we just all hung out together a lot.

I remember the humongous sunflowers that Uncle Mark grew in his back yard. I think I was 6 or 7 maybe when I first learned that sunflower seeds actually came from sunflowers, and those sunflowers were bigger than me in height and width! I remember plucking out the sunflower seeds with my sister and our cousins, Jill and JD, and sitting down to eat our small pile that we had plucked... bleck! My uncle came around the corner of the garden to let us know they needed to dry first. That was where I learned about sunflower seeds... on the farm.

We used to ride the three wheelers around the dirt roads to the red shed and Uncle Mark would come out and check on us to make sure we had asked. He knew we could be mischievous, but I think he got a kick out watching us little things bob around on those dirt roads.

I was the first to marry and move from home but Mark and his family had moved long before that time so I started to get to know my Uncle Mark in different ways, mostly after my grandparents passed. Uncle Mark was the one getting the family reunions together all the time. I think that he knew how important it was to gather and wasn't going to wait for his older brother to instigate it, knowing how shy and reserved my dad can be. My dad supported him fully and always made sure that all of us would show up.

Because of living on the farm you would think that all of us kids would be really, really close to our grandparents and Uncle Jeff just a hop to the south of us and Uncle Mark to the North... but we weren't. Not because we didn't want to be, it was because dairy farming is a busy life and doesn't leave a lot of time for socializing. There was too much work to be done.

The times I remember the most were Thanksgiving and Christmas time when the whole family would gather in Grandma's front room and we would tell stories, sing songs, eat great food and laugh at all the old farm stories the siblings had experienced.

It's funny, if you were to ask me to tell you one of those stories, I wouldn't be able to, but if someone were to start it, I'd remember how it ended.

My Uncle Mark was only 58 years old. Healthy, happy and still finding joy in gardening and family.

To hear that he had died from an aneurysm was a shock to all of us.

But, there was some good that came out of the whole experience. I know that sounds awful to put out there in a blog, but it's true.

I rode for almost 4 hours in a car with my mom and dad and my Uncle Jeff. I had SO much fun talking with all of them, hearing stories I'd never heard about Mark and getting to know a side of my Uncle Jeff I had never realized was there.

At the viewing I spent so much time talking to my Uncle Dan that I haven't seen in so long. I kept telling him I had to poke him to make sure he was real. I laughed with my aunts. I smiled and exchanged hugs with cousins I don't see often.

I felt a connection that I hadn't felt since the days of Thanksgivings and Christmases at Grandma and Grandpa's house. I wanted to cry, not only because I had lost an uncle but because I was realizing all over again what an amazing family I had been part of.

I also saw a raw side of my dad that left my heart aching for the pain he was facing losing a brother just younger than him.

The first brother he had to join him here on earth and the first brother to leave him.

My dad loves his family fiercely. It was so apparent to see as he hugged his sisters and greeted his remaining brothers with tear-filled eyes.

I saw the strength and faith that my Uncle Mark had instilled in his children—and in my aunts tears, I saw the true love he had shown her.

I am so blessed to be a part of such an amazing family.

I'm sad that it takes tragedies, sometimes, to bring families together or help an individual realize how blessed they have truly been.

It all started on the farm... and what came with it was love, trust, faith, hard work, willingness to laugh, endurance and a strong sense of family. No matter how many disagreements, arguments or misunderstandings, those are the traits that give you a firm enough foundation to forgive, forget and move forward.

My Uncle Eric making a space for Mark in the sibling line-up. Brings a tear to my eye...

Thank you, Uncle Mark, for the great example you have been. We will not disappoint you as we move forward here on earth as we continue family reunions, family celebrations and enjoy all the family history you helped bring together.

Till we meet again...

I didn't choose this life...

I didn't choose this life.

At least I don't remember choosing it.

The life I thought I would have when I was younger, no where, even closely, resembles the life I have now.

People think I'm a leader.

I can't tell you how many people have approached me to sell this or that product, Avon, Mary Kay, Amway... anything you can think of.

I am not a leader nor a salesperson.

Neither one of those was my dream as a youth.

I wanted to be a well-known inspirational speaker for the youth of The Church of Jesus Christ of Latter-day Saints.

I wanted to be an actress in as many local plays as possible.

I wanted to make people smile and laugh.

I thought the world would end by the time I was 30... I never even thought what my life would be like at 37.

I planned on serving a mission at age 21 (the age has changed now to 19) for the LDS church.


I never thought that I would raise teenagers who weren't mine when I was only 25.

I certainly never heard of Fragile X Syndrome or ever thought that it would affect my life in any way possible.


Well, as you all know life is never what you planned it to be when you were 11 or even 18 years old. Life just comes at ya, and it comes at ya fast.


So when the leadership of the Fragile X Association of Utah just kind of fizzled out because of being in a different phase in life or moving out of state, I, as the volunteer graphic designer for the Association became, by default, THE leader of the Fragile X Association of Utah.

Leading a fledgling association has never, and I mean NEVER been on my bucket list.

I don't like leading anything.

I know, I know, people from high school may argue that, knowing that I was Sophomore Class President and Student Body Historian... but those were just fun leadership positions that gave me confidence to do the things I eventually wanted to do in life... inspire, uplift and enlighten.

So over the last, I think, for 4 or 5 years I have been trying to work up a new passion. A passion and desire to lead the FXAU to bring awareness to a syndrome that pretty much no one knows about yet 1 in 151 women are carriers, it is the leading known inherited single gene cause of Autism and I have 3 children with it, I have one nephew with it, one cousin, and two second cousins who have children with it. It's definitely in my family... I'm sure it affects many others.

But, I have to be honest. I don't like it. It's hard for me. I'm not like other moms I see out there who have multiple children with FXS and lead their local chapters as if it was second nature to them.

I'm not a good delegator, I'm not a good leader and I for sure am not good at trying to do that while trying to handle 3 children with FXS.

So, when it came time for National Fragile X Foundation's Advocacy Day I told my co-leader (and second cousin), "I don't want to go this time. I really think some one else needs to take advantage of the opportunity. I don't want to leave my kids again."

No one wanted to go.

At least no one replied when we put it out there.

Frankly, we only have 40 contacts on our list and half of them are my family...

I don't blame them.

It's hard work.

It's a time commitment.

It's a sacrifice of our time, our money and our obligations at home.

So, out of duty, I went.

Tiffany was awesome about going. She motivated me and really has the "oomph" I don't seem to have anymore.

So the week before we were to leave I got the news of my uncle passing away unexpectedly from an aneurysm. The funeral was to be 4 hours by car to St. George. My kids can NOT handle funerals, at all, so I knew I would be going on my own while Marc stayed back with the kids.

The viewing was on Friday and the funeral on Saturday so I knew I would just have Saturday night and Sunday to be with my family before I left again to DC. (I'll talk about the funeral in more detail in another post.)

Monday morning I sent the kids off to school and called our respite providers to make sure everything was good to go and then at 10 am I was off to Tiffany's to meet up and go to the airport.

Our flight was at 1:00 and all was well. We had been hearing about the 2300 flights that had been cancelled to fly into Washington DC but we weren't worried because we hadn't received any updates of our flight being cancelled or delayed.

We got to the Denver Airport just in time to use the bathroom and get a snack before our 4:00 flight to DC. We decided to check at the gate and make sure all was well... well, it wasn't. Instead of 4:00 our flight had been delayed 6 hours to leave at 9:57 that night...


So I am here on a trip I didn't want to leave my family for and now I am wasting time sitting around in an airport in Denver! What?!

Like I said, though, Tiffany was positive in the whole thing and she even had an uncle who lived 50 miles from Denver. She contacted him and he wanted to bring his family to see us at the airport and treat us to dinner! So, all we had to do was kill 2 hours and then we'd have something fun to do.

We watched "Penelope" on Netflix on my phone (I love Sprint's unlimited) because it's one I like and Tiffany had never seen it. We didn't get to quite finish it before it was time for us to be off to meet Tiffany's uncle and his family for dinner.

It was such a joy to meet him, his wife and his two lovely daughters. The hours we spent with them put a smile back in my heart and I felt that our flight had been delayed merely for the reason of being able to visit with them... and to try my patience.

Finally it was time to fly out. Tempers for many passengers were running high and the flight attendants were really good at just smiling through it.

It was a 5 hour flight and I couldn't sleep. Restless leg. Uggh. It's a curse. Anyway so I got to know one of the flight attendants really well as I stood by the bathrooms at the back of the plane as we talked and laughed and passed by the time.

During our conversation it came up that I was going to be celebrating my 18th wedding anniversary at the end of the week and the flight attendant looked like I could have pushed him over with a feather. He exclaimed two things, the first was a compliment I tried to take with a big laugh and smile, "You do not look old enough to have been married for 18 years!" Then he started talking about how impressed he was that I had been married to the same man for that long and all while having 3 children with FXS. He started talking about his family and I could just tell that he needed to hear a happy family can exist. It made me happy.

We got into DC at 3:30 am and Tiffany's other uncle who lives in Virginia was kind enough to be out in the cold (and I do mean cold) to get us at 4:00 in the morning.

Side note: Tiffany, you really have a great family!

Anyway, it was probably about 5 or 5:30 by the time we got to sleep.

We woke up at 10. So glad I got to sleep in.

Peggy, Tiffany's aunt, made us some omelets for breakfast and we were quickly in her van being escorted to our hotel for our Advocacy Day Training.

I was still tired.

I was still feeling a little miffed that I was leaving my family for Fragile X stuff again.

Then we entered the meeting room. We were late so it's not like we got to meet and greet. We just walked into a room with familiar faces that I have met over the last few years and felt a certain sort of comfort knowing that I was surrounded by "my people." My thoughts of sacrifice were soon changed to thoughts of excitement to see old friends and make new ones. I also took notice of all the self-advocates there were and how many children there were in the room.

I have to be honest, a lot of the stuff that was said in the training meeting I didn't hear because I was too tired to focus and too excited to be surrounded by people who understand what my life as a parent is like every day.

I was especially excited to see again, after 6 years, one of the people I hold dear and we have stayed in touch over Facebook. I met her at my first, and her first, Fragile X Conference. It was great to be able to give her a huge hug and just see her normal-sized instead of 1 inch by 1 inch on a computer screen!

Me and Kari during a break at the training meeting!

Then I got to meet my good friends Lou and Heather's daughter! She was there to advocate for her brother who has FXS. She was absolutely a doll and had the best Jersey accent just like her mom!

This was actually taken later at the Capitol building... I didn't have a chance to get one the first time I met her.

We had a great training meeting and was actually the best out of the 3 I have been to. We did a lot of roll playing and discussion that also gave the opportunity to get to know other parents better and hear more of our story.

After the meeting was over and Tiff and I quickly left with our luggage to check into our room and start getting things together and freshened up for the Community Support Network Leaders dinner.

Dinner was decent. The company was awesome! My spirits, by this time, were a little more on the bright side, especially because we had walked as a large group from our hotel .8 miles to the restaurant. We had plenty of time to chatter and exercise a bit before stuffing ourselves silly.

We learned more about our leadership roles and what other states are doing in their groups and my heart sunk a little. Utah had nothing to say for themselves. I don't even want to think about the Parade of Pumpkins right now... I don't even know if I can motivate myself to do it again (that's another story for later).

But, then we were quickly back to laughing talking and making new friends. I met and got to know 2 dad's that are parents of a child with FXS and a dad that is a carrier of FXS. Love their commitment and their drive to bring about awareness.

It was late when Tiffany and I got back to our hotel room and we still had to put together the packets to take to our senators and congressman. During this time I started feeling a twinge of guilt again, thinking that if I had been a better leader that we would have more pictures and letters to represent our state. There were 2 congressmen we didn't even get meetings with because we had no representation for those areas soon enough to get the appointments. So as the wee hours were coming I started wondering, why am I the leader of this organization. I didn't choose this--it fell into my lap. I'm not one to just drop everything and let it crumble, but maybe even with my trying, it was crumbling anyway.

And then I woke up after 2 and a half hours of sleep to be ready, have our bags packed and waiting in the lobby for our 6 am bus ride to the capitol.

Have no idea what face I am making there... but I like my lipstick... hee hee!

There came that excitement again.

The rush of 3 bus-loads, 170 of us all fighting for the same thing!

It's exhilarating!

We went from riding together on the bus, getting pictures on the capitol steps, touring the capitol and house floor and then we hit the ground running to talk to our Congressman and Senators and tell them all about Fragile X and how it could be the path to understanding Autism.

I'm in the middle-ish about 4 row up from the "n"

Some of the ladies that I feel I got to know much better... not necessarily because we know each other's favorite colors and all, but just sweet moms who "get" it and are happy.

Tiff and I had to take the opportunity to get photos with a couple of the "stars" of our  Fragile X world, Holly and Amy... I just had to get a "selfie" of us because, well, it was just funner that way...

Tiff and I on the steps of the capitol... and yes I was really tired so aren't a entitled to having bags under my eyes... and chin... Yeesh! Anyway had to put it up for memory's sake.

Me and Tiff with Brigham Young in Statuary Hall.

Me and Rosa Parks (hers is one of the newer statues there)

With Greg Harper, Congressman of Mississippi (and father of a son with FXS) who gave us the House Floor tour and walked us through the capitol. This pic was actually taken out on the Speaker's Balcony!

 Just me and Tiff being me and Tiff!

It was amazing!

I can't even begin to explain the strong spirit and excitement that I felt with each meeting and truly felt that most were very excited to help out FXS in any way they can!

It was even awesome to talk to Senator Hatch's staff member about Fragile X and watch his face light up with realization that his nephew may have Fragile X and not Autism like they had been diagnosed. It's moments like those that you think, "Even if all I did was help one child get the correct diagnosis, I've done enough!"

We even got in an unscheduled meeting with one of the congressmen that we didn't have an appointment with. We just dropped in and asked and it all worked out.

One of the most memorable was talking to Congressman Matheson and seeing his excitement when he recognized us from last year and was so excited to tell us that he remembers what FXS is and told us all about it. He was so excited about the things we asked that you could just feel a genuine desire to help our cause. That was our last meeting and a great way to end the day. I couldn't just let it end with a simple thank you, good by and a posed picture from the staff, so I asked Congressman Matheson if he would be willing to take a "selfie" with Tiffany and me. The look on his face at the moment of my request was priceless and he answered, "Well, I have taken my own selfies a few times... sure!" I told him I didn't want him to forget us so I wanted an original picture. The staff thought it was so great that they had to take a picture of us taking our picture.


staff shot of our "selfie"
Tiffany and I laughed the while walking for 4 blocks to meet her uncle picking us up to take us back home. We were so tired from all the walking and the mental drain of trying to act smart and engaging for the entire day. We felt like zombies.

We got back to Peggy and Ken's house and Peggy had lasagna and corn bread waiting for us. We got home about 7, ate about 7:30 and I wandered back into the bedroom Tiffany and I were staying in and I was out. Completely out!

I had worn out every aspect of my being.

I think mourning the loss of my uncle, the guilt of not leading an association the way it should be, along with the guilt of leaving my family again, been brain drained by the training and then physically, emotionally and intellectually giving all that we had that day took it's toll on me and I fell to the bed like a log and stayed there.

I'm still recovering.

But, it was so worth it!

I know we made a difference on The Hill that day.

I know that God was supporting us through every word we spoke and every step we took.

I know that I love being able to make a difference for this affected by Fragile X.

I also know that leadership is a tough thing for me.

I don't know how much longer I can do it.


This is not a resignation, but an admittance to knowing I can't do it all even though it would be awesome if I could.

Funny thing is, his is not the life I chose... but, I am still accomplishing the things I wanted to do ultimately:
-Inspiring (because I'm still standing and functioning even though all 3 of my kids have FXS)
-Making people laugh (because what isn't funny about raising 3 children with FXS)
-Acting (because I really don't think too many people knew how tired and miserable I was while there)
-I'm serving a mission in Fragile X Syndrome Awareness
-And I made it past 30!