Tuesday, November 26, 2013

Red, White and Utah!

That's what you get with the red rock of the Arches National Park of Utah during a snow storm…

Marc gets to go on some really awesome adventures! I must say he has seen some of the most beautiful areas in Utah and I love seeing his photos when he gets back! This time he was able to go because a young men group from the church needed another leader to attend. Marc was excited for the opportunity.

I really want to get this guy a GoPro Camera! He would have way too much fun!

Anyway! I've been excited to get his pics up from this last weekend, so here they are.

 A couple selfies...

This is Scott. The other leader that went.

This looks like a Christmas tree! I love it!

I'm thankful that Marc is adventurous enough to capture the beautiful landscapes of Utah.

We are so very lucky to live here!

Saturday, November 23, 2013

This Young Man...

is gonna be 14 really soon!!

I can't believe I am 36 and I have a 14 year-old son!

I still feel 19!

I recently had a conversation with someone about how our expectations are so different for children with special needs. When you have children with mental impairment you never know how far forward they will be able to advance socially, emotionally or educationally.

Will Brother act like he's an 8 year old trapped in the body and social expectations of a young man's world for the rest of his life? Or will he eventually be acting like a 14 year-old in a 25 year-old's body.

I don't know.

Marc doesn't know.

Frankly, Brother doesn't know either.

I am not even sure if he really cares.

I think he is a little confused sometimes that his peers don't enjoy the same things he does.

On the other hand I think his peers are confused when they find out he still likes to color in coloring books and play with toys.

I guess that's where the elite balance of his friends come into play.

He is so blessed to have peers around him that understand both sides and accept and encourage him in every way.

I'm pretty sure every 14-15 year old that comes to our house would't choose to sit down and color, watch trains endlessly on YouTube or listen to him sing at the top of his lungs while they are watching a movie together… but because of how great they are to him, you would never know. You would think they came over specifically to do just that with him.

I am so grateful everyday for the friends that Brother has in his life.

Did you notice I didn't put it in quotes that time?

I am accepting that a friend is all kinds of things as long as they are accepting of who you truly are and will care about you no matter what battles you may be fighting.

I am impressed with the youth in our area.

I am impressed with the involvement  our district brings for main stream students and special education students.

I cannot tell you how amazing it is to have young men, like Elvis, (ha! I just love his blog name) show up at our door every Sunday to walk with Brother to church and watch them keep a smile even after Brother shuns them because he doesn't want to go with them. But, they keep coming, every week, with a smile on their face. They know, deep down, that Brother truly appreciates their kindness but doesn't always have the anxiety levels under control.

I love that Gracie will come 3 times a week just to play the same WII game for hours, color, or listen to Brother sing his heart out! It's truly amazing.

Or when Lexi invites him in to join with his violin on her viola practice.

I love this 14 year old!

I love all the 11-18 year olds around him who care about him and take care of him.

I love seeing Brother's personality shine as he learns so many things from his peers.

It is inspiring to watch Brother every day.

He makes me smile.

I mean, really, who shaves their eyebrows out of curiosity?

Who can hug his sister to pieces and still have enough energy to give me endless hugs?

Who has a way with babies like he does?

Who has the determination to live like a pioneer for a week and be a shining example to those around him?

Who can jump into a pool and make you laugh?

Who can be brave in spite of complete fear?

Who likes to make his daddy smile by trying to be just like him?

Who can turn a fan into a shield for anxiety?

Who can turn their iPod into a million dollar camera capturing the million dollar images?

OK, maybe not Brother, but I am sure proud of him for trying!

Who else loves Indian artifacts so much that he is already talking about his next trip to Escalante with his dad?

And, really, most of all this kid can make you smile just because he does.

I love this kid and I am so proud of all the things he was able to accomplish this past year.

Happy 14th Birthday soon Brother!

If you want learn about what a young man in his 14th year is capable of  
and are curious to learn more about Mormons, you can read more about it here.

Friday, November 22, 2013

Writer's Block...

I was going to write about this…

I even started on what I was going to write about it… see…

Have you ever seen Disney's Dumbo?

When I was drawing this on my neighbors driveway I found out that there are some kids out there that have never seen the movie "Dumbo."

At first I was like, "What?"

And then I was like, "Oh, ya, I'm old… and so is the movie."

There's so many things… (that's where it ended)

That was about a week ago.

I don't even know where I was going with it… I mean, I know somewhat, but it just never came.

So I just haven't written.


I didn't know what to write.

It's not that my life hasn't had tons to write about, I think, it's just that I can't seem to express all that I am feeling lately.

Marc is off camping and the kids are asleep, so I thought I would take a stab at trying to write things down again.

Facebook has been flooded with "Thankful" posts.

I want to join the bandwagon, but at the same time I don't want to be a follower… I guess.

I am so thankful for so many things.

We all should be.


If you want to get depressed, think of all the wrong that has been done to you, all the wrong that is in the world, all the wrong you might do if you make the wrong decision, etc.

If you want to pull yourself out of being depressed you really have to think of all the fantastic things going on in your life.

Look at the bright side.

I guess that's why it is such a great thing to have Thanksgiving as a Holiday, it teaches us to reflect and see all the blessings we are surrounded by each and every day. Big or small. Thankfulness in our hearts for all that we DO have and all that we DO know.

So bring on the thankful posts everyone! Being thankful can help you stay positive!

Here are my examples that I jokingly and seriously remind myself of sometimes.

All 3 of your children have Fragile X Syndrome, ADHD and Autistic like behaviors
Because all 3 of your children have FXS you are strong willed and 
determined to make theirs and your life better. (And they make you, and others, laugh… a lot)

Your house was flooded a few months ago and because of the damage done your children's 
world was turned upside down while you worked on getting your basement back in order
Having the memory of all those who came to your aid and continued to come 
to your aid during and after the flood and feeling blessed just to have a roof still over our heads

You waited 7 years to receive respite care for your daughter and thought for sure you 
were on your fifth nervous breakdown by the time she had turned 8
You count every blessing and every moment that you receive now that your daughter finally is receiving the help you both need and you decide not to take a single moment of it for granted

Do you remember the part at the end (spoiler alert) of the movie "Dumbo" where he is so excited to show the audience he can fly and then he loses his special feather the birds gave him?

Dumbo was devastated. He couldn't fly without his special feather. He thought he wasn't good enough on his own. He was going to give up. He thought he was falling to his doom.

With much encouragement he realized the power to fly was within himself and that it was something he could do because of his awesome ears and determination.

He could have given up and died.

But he willed himself to fly.

Even though he could have held onto the fact that he had been constantly picked on and mistreated, and was told he was good for nothing but a few laughs, he decided to believe in himself regardless.

Why can't we do this more often?

Stay positive in the face of adversity and take flight.

See, I guess I really did want to write about Dumbo…

or maybe I'm just partial to big ears!

Wednesday, November 13, 2013

The Post Halloween Post

I never even got around to posting about Halloween! 

Not really anyway.

I told you all about how "Incredible" Sister is, but I never got to tell you some of the other fun stuff!

So I had dressed up as Audrey Hepburn from "Breakfast at Tiffany's" for my  mom's party and for our ward party, I wasn't feeling good on Halloween so I didn't feel like doing much. I did finally get around to putting on my witch hat and drew some cracks on my face with my eyeliner… I was a Crackling Witch… get it… instead of Cackling Witch I was Crackling… anyway. I was just proud of myself for coming out of my slump to get in the holiday spirit.

Marc's been having all kinds of fun with his disguises this year! He he! The only thing was is that everyone thought he was dressed as someone from Duck Dynasty… I guess anyone wearing a beard at Halloween time must be from Duck Dynasty… He'll try to shake it up a little next year.

This is the part that I loved the most about all of Halloween.

Baby actually went Trick or Treating!! She would even walk up to each door and say "treat." This is the only picture I got of her while we were out. She is waiting at the door here after she had knocked.

I didn't get any pics of Sister because she was too cool to come with us door to door, she had to go with her awesome friends and their dad. Have I mentioned how awesome the people are who live around us.




Monday, November 11, 2013

My LINKS to Fragile X

So you all know Marc and I have 3 children with Fragile X Syndrome, the world's leading cause of inherited mental impairment and the leading known genetic cause of Autism.

If you didn't know we are linked to 3 children with FXS… you're new to this blog.

If you didn't know that Fragile X could be the key to finding a cure for Autism… you're just like most of the world.

The first "if" is a big deal to me and my family.

The second "if" is a HUGE deal for the rest of the world!

People ask me all the time, "Why do you lead the Fragile X Association of Utah when you already have your hands full with 3 children who are affected by the syndrome?"

The second "if" is why.

I want to make sure that every family in the world who has Autism running in their family knows to get a blood test for the Fragile X gene.

Some people ask why I am so passionate about helping those who may be misdiagnosed to get the real diagnosis…

This is why:

The Fragile X Gene causes several issues to those who carry the permutation gene that are often misdiagnosed as Parkinson's or early Menopause. Read more about these facts here.

And you approach Fragile X differently than you do Autism, trust me, I know. I watched Brother fall apart when forced to make eye contact because Autism was what many of us thought he had before his diagnosis of Fragile X. After the FX diagnosis we learned that allowing him to get to the point of feeling comfortable enough to make eye contact on his own and even looking at the floor instead of him when requesting something of him.

I know this is a bold post.

I know some people may leap out of their skin because of me trying to say that your child may indeed have an inherited syndrome and not an Autism Spectrum Disorder.

This is why I am part of the National Fragile X Foundation LINKS groups.

I want to learn more how to lead and guide our small association here in Utah to reach out to all those who may have been misdiagnosed or think there's just something more going on other than an Autism Spectrum Disorder.

The National Fragile X Foundation is giving me the keys to being a better leader and advocate so that no one has to go through the heartache, wonder, and frustration of not knowing exactly what you're dealing with.

I had the opportunity a few weekends ago to go to St. Louis to be trained as a better leader along with my co-leader (also known as "more than my sidekick"), Tiffany.

It was overwhelming, exciting, exhausting, exhilarating, and motivating for all of us. I am excited to know that I have more help standing beside me. Because I have to admit, this is NOT easy leading and raising Fragile X. I try to give up sometimes and even have, but every so often I get a reason to continue to move forward and this LINKS Leader Retreat was just the push I needed.

This is the Tiffany Sandwich. Tiffany on my left and Tiffany on my right!
Love them both and it was fun being the 3 Mormons together (smile)

Cool Cookies! That's National's Logo X on that there cookie!
I'm thinking you're going to see a lot more of that X here in Utah...

Just some of the great mom's I was able to hang out with!

This photo makes me laugh… a lot! I look like a minion. I just need some overalls…
I really need to find out if there is a class on how to take "selfies" ugh, I'm just no good at it (laugh)!

                                                                image borrowed from here

I guess this just shows how excited I was to get out of my seat for a few minutes...

I even got to meet one of the people in the blogging world of FX whose blog I love to read! Yay!
So fun to meet you in person Bonnie from the Fragile X Files blog!

And to think I was right there in St. Louis during the World Series and this is all I got was a picture with a balloon arch at the airport… tee hee!
It was a great experience and I am excited to have another push forward.

One thing I did love, other than all the camaraderie, was seeing so many mom's with their hefty duty Otter Box covers for the iPhones. I'm an anomoly in regular situations, but at a Fragile X Gathering I know I am among those who have to protect everything they have that is important with the utmost security.

The theme of our LINKS leadership meeting was a quote by Vince Lombardi, "Individual commitment to a group effort—that is what makes a team work, a company work, a civilization work." 

Saturday, November 9, 2013

The Place Holder

Sorry, I know you are waiting with bated breath, wondering, "What is Rachael going to blog about next?!"

Well, I am just going to write…


This past week has brought many big changes to Our Life.

All good, mind you.

Just a lot of changes.

I have to allow it all to marinate and simmer for a while when there are changes in my life.

Then I can get back into "regular" life.

So, I'm sorry this is nothing interesting

So I guess this post is just the place holder until I find a better substitute…

Monday, November 4, 2013

She said...

"I love you."

3 simple words.

I've heard baby say it many times.

Only when I have asked her to say it though.

Tonight as I tucked and squeezed and kissed Baby good night she squinted up at me with her big toothy smile and said,

"I love you."

I said, "I love you too."

I was able to say "too" at the end of that sentence for the first time ever in Baby's life.

So, yes, I am behind in blogging and haven't caught up on many things, but this was I night I did not want to forget.

She told me she loves me without a prompt or encouragement or as a repeated phrase.

She said it.

I think she even meant it—you know—really knew what she was saying she cares deeply for me.

Maybe I'll never hear it independently from her again…

but, at least, I heard it.

It melted my heart.

Friday, November 1, 2013

Drug Free

I forgot to post these last night! They are some of my faves and I just had to share.

A couple of weeks ago was Red Ribbon Week at Brother's school and it is all about teaching kids to say "no" to drugs.

I guess Brother's class participated in making signs to go in the halls! I didn't know this until Gracie saw one hanging up and sent it to me in a text! She knew it was his because of the Gypsy Horse reference...

It made me smile really big!

It says "Instead of drugs, reach for the Gypsy Horses."
This one is supposed to read "Reach for the bubbles, not drugs."

All such great advice from a young man with FXS! Man, I love that kid!