365 days of Up

When I was a lot younger, between 10 and 21, I was an avid journal writer.

I love reading back in my journal when I was dating Marc... so romantic...

After I was married a few years journaling kind fell to a once a month thing, then every couple months and soon it was a lucky chance to catch up the highlights of the entire year.

A while after moving from Payson to Santaquin I had discovered this "blog" thing that I had been hearing so much about and actually had started getting into a few particular blogs and found them so intriguing and interesting. Finally, it hit me, I had a pretty interesting and intriguing life AND I wanted to bring awareness to Fragile X Syndrome.

Thinking that this could be kind of like journalling again I saw it as a great thing to try. I had no idea the importance of the title or URL of a blog and had NO idea how to be internet savvy so I just kept it simple: marcandrachael.blogspot.com and it was about our life so I called Our Life. Nothing really creative. I didn't even really know what to write about, really, check out my first post here.
As time went on I was amazed at the things I was taking more notice of in my life.

The good and the bad.

I have been writing in this blog for almost 7 years.

I'm not famous.

I'm not the Go-To information site for Fragile X Syndrome.

I don't really make money from blogging.

I've never been recognized, "Hey! That's Rachael from Our Life!"

My family is not on the cover of any magazine or book.

We're not bringing hundreds of people to a successful diagnosis of FXS.

I don't even know if I have been a beacon to others of my beliefs.

I've watched bloggers, YouTubers, and vloggers shoot out into the world as influencers, teachers, icons and leaders that people just can't get enough of.

Heck, I've never been contacted by Disney or Dreamworks to create anything for them or to give them input on how they should portray a mentally impaired character in one of their cartoons...

I just want the world to know what Fragile X is, how it affects a family, how our beliefs affect our lives and try to put fear from peoples minds when it comes to understanding mental impairment and Autistic-like tendencies.

I've been discouraged that I am still just an average writer, and average blogger and realizing that I am so not into marketing myself and realizing how much effort it takes to get out there and known.

I worry that my Facebook friends probably get sick of seeing that I've posted another blog post and might have just hidden me to save them the hassle of seeing it pop up...  It's OK. I still love you if you've done that. (smile)

So I just kinda stopped.

I thought that I was putting myself out there in the world for nothing.

Why haven't all these blog posts (1011 including this one) shot Fragile X Syndrome into the limelight and helped families receive diagnosises, given youth an understanding of the struggles a mentally impaired youth goes through.

I guess I'm competitive or something.

I just have to keep up with all those that are doing great things and getting their posts shared worldwide to promote or bring awareness of their cause.

I've realized that that was all very dumb.

I'm not blogging for attention or praise or fame.

I'm blogging so that I can read back on my past, see how far I've come and know that I can make it that much farther.

It's crazy to realize when I started this blog that Baby wasn't even a thought in our minds.

I can't believe I raised 3 children, not my own, through their poignant teen years and served to tell the tale (wink).

I still cry when I look back and read about Baby's diagnosis of FXS.

I always giggle as I see the funny times caught.

I grin with pride when I read what Marc and I have gone through and are still together 18+ years

In January of 2013 I hit a big low, but I refused to let it keep me down so I decided to post every day for 7 days of positive things, "7 days to Up" is what I called it.

So, I have decided that since writing brings me happiness that I am going to make a goal to write some thing everyday even if it's little. I want to challenge myself to write 365 days of Up and see if it makes my 2015 just that much greater.

I'm not going to fall into the blogger competition and feel like I need to be followed by hundreds of people to make a difference. If I make a difference in my own life that that is enough.

I am happy to be writing for me and my family again!

So!

Here's to 364 more days left of Up!

Two-sided

Is it possible for your heart to be full, yet broken?

Like, maybe, one half is packed with great feelings and gratitude, but the other side is achy and somewhat empty...

Well, if that is possible, I feel like that.

On Tuesday I was able to be a chaperone at Brother's Christmas Tour in Salt Lake City.

I was bursting with joy and pride that my son is part of such a wonderful choir. I loved watching his enthusiasm in every song and the expressions he had on his face with each line

One of my favorite parts was Brother's reaction to the inside of the Utah Capitol building, "Mom! This looks like a Palace" He was so right. It was quite beautiful!

But, the other side of my heart also noticed that he is different from his peers in this choir class. It was hard to see his strong desire to be social, but watch the awkwardness of his social skills. Also, to be reminded of his youthful heart and mind as I watch him struggling to pay attention and stand still, yet can't help but smile because that's "just Brother."

The entire group had the opportunity for a little eating and shopping at City Creek until the bus left for home. The funnest part of that was watching the TRAX trains with him after we had finished dinner and had done a tad bit of window shopping.

Do you notice that it is just me and him hanging out together? Well, that's all it was. Just us. I'm glad I was there so that he wasn't alone... which, really, he wouldn't have been... I know that he us surrounded by so many youth who would take them under their wing and watch over him. In fact, there was one point when I was checking out the Disney store and Brother was not by my side anymore but was with a crowd of choir girls who were having fun with him for a while. He was grinning from ear to ear. So, ya, I know they would have watched out for him, but it's hard to know that your kid is really the babysitting project and not really the friend of choice to hang out with.

I understand.

I totally do.

It doesn't mean it's not hard to be witness to.

But, he did get a second chance to be with "friends" at City Creek in Salt Lake!

Later that week Brother had the opportunity to go with some friends in our ward to ride Frontrunner (A short distance train) up to Salt Lake City and go to City Creek for food and Christmas shopping.

I really wanted to get pictures from them of this trip so I could include them in this post. But, I haven't pushed the issue yet.

I also really want to tell you all about it, what I know from my side anyway, but I can't, at this moment, put any of it, really, into words... I know, that sounds a little strange for me. I am just so grateful for the charity and compassion that people have for Brother.

I want to sit down and write a personal not to each person individually thanking them for the impact, influence and experience they gave brother of knowing what it can be like to hang out with friends. He was beaming from ear to ear when he came home that day.

He felt like one of them.

You know.

Just like everyone else.

Charity is two-sided.

Everyone involved is benefitted by it.

That's the kind of two-sided kind of thing I will try to look for more often in my life.

Angels Among Us

I heard a song the other day and when I heard it I was singing every word and was reminded of how much I love it. It's a song I grew up hearing.

I listened to country when I was growing up, mostly because my mom listened to country, wrote country music and we sang country music when we performed, so it was kinda there all the time.

Anyway, Alabama was always one of my favorites. No, not the state... are you kidding? We never traveled anywhere when I was young, the farm kept us from that pretty much.

No, it was the band Alabama.

Man, they were good.

But I heard their song a couple days ago and was so excited to hear and then wondered why I hadn't heard it on the radio in so long.

Then it hit me. I guess in this day an age, the only time it's appropriate to sing about angels is at Christmas time. I guess it's OK to bring up Christianity when it's Christmas time because no one wants to lose out on the market we have created at Christmas time.

The song I heard was an old favorite called "Angels Among Us."

Here, take a listen:

OK, I know the video has all kinds of reasons to make us laugh... it was the 90's... what wasn't funny then... anyway, I will save my sarcasm and jokes about the video for another post.

For now, I just want you to notice the lyrics and the meaning of the song.

When I was growing up, this was not a Christmas song.

It was an everyday song.

I heard it all the time.

It's kind of sad to think that the only time we are exposed openly to uplifting and faith promoting music is at Christmas.

I am so thankful that my family is exposed to a Christmas-like spirit year round. It's such a blessing to know that there are angels among us all of our lives and not just during this fantastic holiday.

I recently did a book cover for a book that was based on an after death experience and a stillborn child.

I felt strongly inspired to ask my brother, Aaron, and his wife, Chelsea if they would be OK with me using an image from when their first boy who was born to heaven. (You can read about that here.)

If you read the post you'll recognize the photo on this cover

The cover isn't even the coolest part. It's what's on the inside that counts. Inside on the copyright page, it reads:

Cover design by Rachael

Cover image: Aaron and Chelsea's "Baby Born to Heaven," photographed by Heidi 

(last names were included on the page)

Heidi was an earthly angel in the presence of a heavenly one that day.

I think that there are angels among us.

My whole family loves and adores our children, who are angels in their own way, but my sister Jessie has a special "second mom" space in her heart for our kids.

I believe there are angels among us.

Our kids can be a handful and heaven knows it.

I think that there are angels among us because even during huge amounts of frustration there is always something that I can smile about and be reminded that my children are angels... 

I just had to smile when I walked into Baby's room the other day to see all her precious little ponies lined up in her window. She talks to them as she sets them out.

Our children are like angels

I know there are angels among us.

I'm glad I, at least, get to hear the song during a special season.

My challenge to you during this special holiday season is to be the angel to someone. Look for opportunities to serve and inspire.

Dancing Dog

Another Our Life vlog for you to enjoy!

Then and Now

I was looking through old videos and pictures today for various reasons and I got caught up in watching them and laughing, crying and remembering.

It was so much fun.

Also, a little painful though, because I was able to see how far Sister was in her development at 5 as compared to Baby now at 5. It makes me worry a bit. And to see how open to being on camera Brother used to be.

On the other hand, it was so touching and sweet to see them and their sweet and wonderful personalities.

Then I thought I would put it together in my next YouTube video so you could maybe see a bit of what I am talking about.

So here is your little awareness plug on Fragile X Syndrome this week:

Enjoy!



Oh, and here's some pictures just because I took them last night and I want to share!

Another YouTube Video!!!

It's only been a month since my last video!

I know.

Too long!

Well, here it is people!

Enjoy!

Oh, and ya, it's got some Halloween in it...

so what, it's not Thanksgiving yet!

Faces

Baby is pretty creative.

It's really fun to see what she comes up with sometimes.

Another interesting fact about Baby is that she doesn't eat much of anything except supplement drinks.

But she does like M&M's.

So if she requests them for dinner I gladly oblige just to have the opportunity to have her stick around for a little bit.

I guess she wasn't hungry, and instead, was just feeling creative...

I love that she put hair on and everything!

After she was done with "dinner" she stole my phone and took a picture from her favorite sitting spot of our special dinner guest. (That's our nephew way back there still sitting at the table with Marc.)

She's good at that too...

stealing my phone.