Monday, August 25, 2014

Old Maid, Swimming and Bowling

My mom goes to a lot of yard sales.

I'm not complaining.

She get's some pretty awesome things.

Some things are not so awesome.

Some things are just fun, because their iconic.

Like this Old Maid card game:

The cards are as big as Baby's head!
She didn't want so much to play the game as she just wanted to hold and organize the cards.

She's smiling because she has a My Little Pony to help her with the cards...

Sister, is most likely, our most social child. She, sometimes, is all about trying new games. So we sat down after Sunday dinner and played Old Maid. Sister thought this game was the best ever and didn't want to stop playing.


 This is the crew that was left after I was done playing. 
Sister is still there, hanging in strong, next to her cousin J-man.

The next day was the 4th and last week of Sister taking swim lessons. She was so funny to watch. She wants so badly to learn how to swim, but is quite terrified of putting her head under water... even after 4 weeks of lessons.

Her teacher, Niel, was so sweet with Sister and would make deals with her for how many times she would go under the water. She would squeal, kick and yell not wanting to go under, but, then, after she came up out of the water she would look for me with the hugest, proudest grin on her face.

It was so neat to watch her be part of the City's adaptive swim program. She had one-on-one lessons and I am positive she would not have done well learning swimming in a larger group. She LOVED it!!! She really enjoys the sport of swimming. It was fun to see how excited she would get each time.

Not to mention how especially excited Sister was when she found out that her instructor collected Poké Mon cards. He even gave her one during her last week because she had gone under water 5 times. She did finally finish with 7 dunks under the water... maybe next time she'll actually try swimming at her swim lessons.

My brother's family came to visit a few weeks before he came out to visit. On the day he was able to come out we all got together for some family bowling. I asked Gracie to come with us because I knew I would need the extra help, even with the family all there.

We were a bit late so when we came in everyone was already starting. I ran over... OK, my back was actually bad that day so, I actually slowly walked carefully and squeezed Daniel as hard as I could and kissed his face because I was so happy to see him. He turned to me and asked if I learned that in Europe! I said I was just so excited to see him!

Then we got everyone set up to bowl.

During the first 15 minutes I thought, "I can't believe I don't take my kids bowling more often. This is great. Look how much fun they're having! We should start doing this as a weekly activity. They are really enjoying this and they are doing so well! Oh, I'm so happy!"

Baby LOVED rolling the ball down the slider-thingy. Grace is to her left as she was the one helping her each time.
It took some effort just to get her off the floor so someone else had a turn.

You can't see it, but Brother was grinning from ear to ear.

Sister couldn't have been more proud of herself.

And then it all hit the fan.

It was like a switch.

The reminder as too why I don't do things like this with my kids very often.

It got harder and harder to get Baby off of a lane because she was so obsessed with rolling it down and watching it over and over again.

Brother soon got overstimulated around the same time we had to remove Baby from the bowling lanes for her own good and any one else who was playing and he sought her out as his overstimulated sensory object. Poor guy, after he had hugged her a little too much, he said, "I'm sorry mom. I'm just so overwhelmed right now."

I was so happy he recognized that! Now I just needed to work on having him recognize that before his little sister becomes the object of his release. (Count your blessing when you find them.)

And Sister just started doing her fall apart and freak out thing where you can't calm or talk sense into her.

Everyone in the family was pretty much done anyway, so we just quit early, but, I guess Sister saw that as a great time to feel UN-overwhelmed and continue to bowl through everyone's turn because no one was there to wait for. Turns out that it was not the crowd or the music or noise that overwhelmed her, but having to wait for her turn had proved to be too anxiety provoking while she was so excited for her turn. The excitement combined with the anxiety of waiting turned into a bad combo. So I happily let her play for another 15 minutes until I had my sister get the Bowling Alley manager to turn the game off so she would finally leave thinking the game was over.

Although a lot of our outings end like this, I have to admit, that it is really fun for the moment that I feel like, "Sweet! This is going great!"

My sweet family, being thoughtful of my overstimulated kids, decided to skip a picnic at the park and come to my house where Brother, Sister and Baby would feel safe and secure  and I made food for everyone and we ate lunch outside in the back yard. It turned out to be so much fun.

I'm so, so thankful for the understanding and acceptance my family has for our children. It's truly what makes a difference in raising children with special needs.

My hope and prayer is that all families who have children with special needs, whether they are cousins, nieces or nephews, siblings, aunts or uncles, or whatever other relation will rally round them with love, acceptance and understanding to the best of their capabilities.

I promise, children with special needs know and sense who truly cares for them and will respond accordingly.

Be the one they can trust and love.

Saturday, August 23, 2014

Playing it up!

So I have back surgery scheduled for October 23.


That's the soonest I could get in.

Check out this pic I took of my full body scan I got a few days ago. It's informative, but I also just think it is plain cool! I mean that is all of me in one Xray. I've seen certain part of my body in an Xray, but seeing me in this way, is just, well, surreal...

So a body scan is done by pumping a mixture with some radiation into your body through an IV. The  scanner then picks up the density of the bones where the body it trying to heal itself so it shows up more white. So, check out the middle skeleton, you'll see in the middle of my where my kidneys are white because they are working to pump the stuff the just pumped in, out of my body and the bright white spot would be probably half of what's left over from the 16 ounces of water she advised me to drink before... yup, that would be the blatter. But, if you look at the bottom of my spine in-between the pelvis you can see a density there and that it where the sever degenerative disc disease is.

Fusing my disc is what I am going to do.

And I am having Dr. Reichman do the surgery... he is one of the best in the nation... so I feel safe in his care.

I know you all have your ideas, but I have tried it all.

Exercise, stretching, yoga, natural remedies, massage, creams, sprays, physical therapy (A big shout out to Mountainland Physical Therapy in Santaquin!), walking, biking, pain meds, pain management, Cortisone shot, steroids etc.

But after 12 years of dealing with the pain coming and going in waves and the waves of pain getting longer and stronger, nights of having to stand up because the pain was so searing I couldn't lay down to sleep and standing brought less pain, I made my big decision.

The problem is, I didn't make this decision until after being cast in The Addam's Family at the Scera (which opens September 12th).

Ya, I was so excited because my back had been doing so well for such a good stint of time, that I thought for sure, this time, something I was doing was working.

I can't tell you just how excited I was to be cast into a play after not being in a play since Junior High.

The first few weeks of rehearsal I was feeling great and having the time of my life. I was feeling confident in the singing and in my ability to have all my responsibilities and still do something each night that was selfishly for me.

I don't think I have been this selfish with my time in years.

I have put a lot of time into being a mom and wife, running the Fragile X Association of Utah, bringing awareness for Fragile X Syndrome, working as a designer and photographer, serving in my church callings and advocating for our children and their needs now and in the future.

I now understand why people say you just need to have time for yourself.

I feel like a whole new me... well, the old me, really.

I LOVE being in this play!! And I think I shout that out at least 3 times a week at our play practices!

I love it!

But, about 2 weeks into practice my back started going through that "pain wave." I just kept plugging along trying to take it easy on choreography for a bit, but the pain continued to worsen.

I remember being up one night, you know, literally, UP... one of those too-painful-to-lay-down nights and just standing and leaning against this wall to see if I can somewhat rest and I started to cry.

Crying was nothing unheard of at this point.

It was painful.

So I cried.

On this night, though, I started crying because I thought I would have to pull out of the play.

Being in this play has been mentally and emotionally uplifting and freeing for me.

I feel kind of silly even saying that. Especially because it's not like I have some main part or anything, I'm ensemble, but dang, this is one awesome ensemble!

So I have been trying to do all I can to make it through this whole thing and finally decided on getting my "post-surgery" back brace before the surgery to see if it would help me.

It has helped so much!

I can't even explain just how relieving it is. I can now walk most of the time without slicing pain through my lower back and I can even lay down to sleep.

But, the best part is that I can still be in the play!

And then, after the excitement of the back brace's miraculous ability to keep my back from feeling severed, I start realizing how awkward I look.

With the back brace on.

I already don't have a very good self esteem.

I am not happy with my body.

I certainly don't feel sexy by any means.

So, when we start learning some of the choreography and I am really having to watch myself in the mirror I start feeling even more self conscious of my body and my looks and how long and gangly I look when I'm trying to dance, and now I have this awkwardly mechanic looking thing wrapped around my mid section adding more attention to the very area I am most self conscious about.

I don't feel beautiful as I move even without a back brace and now I have to add something that restricts my movement even more. I want to be able to see my body flow in liquid and rigid motion without the hindrance of my awkwardness combined with this awkward back brace.

Yes, I am wearing polka-dot pajamas... moving on...

I have these images in my head of what I should look like and what I hope I look like as I am dancing and moving about the stage. I mean, heck, in my head I am Julianne Hough for Pete's sake! Maybe that's why I love that reality show, "Dancing With The Stars" so much is because people like me (well like me, but a ton more famous) can do beautiful things with their bodies in dancing.

Then I get upset with myself and give myself a good talking to,

"Rachael, you're being dumb! You are having fun. You are the mother of three children with special needs that you have had to carry, pick up, roll around, swing, wrestle and restrain for the last 14 years. Your back is going to feel that. Period. Enjoy the moment and have fun and not worry about your awkward body or lack of sex appeal and just love the fact that you are a 37-year-old mom of 3 children with Fragile X Syndrome who is finally taking the initiative to do something for yourself and only yourself!"

After that stiff talking to, I can pick up my wrinkled confidence and carry it with me through this journey, whether it is shaky or not, it can only get better as I prove to myself what I can do for myself while I'm in pain.

I've proven what I can do for others while in pain.

Now I get to enjoy my pain... Ha! Man, I make myself laugh!

Seriously though...

OK, not so seriously. It's all funny if you think about it... I mean, really it is.

Just laugh people, I mean I just said I picture myself as Julianne Hough...


Thursday, August 21, 2014

Just Us Girls

This post is just about us girls...

the pictures will do most of the talking this post...

Baby likes to be where we, her parents, are. Even when Daddy is working out, she tries to fit in...

I guess it wore her right out!

We found this antique Schwinn cruiser bike at my mom's house that was just Sister's size... she couldn't have been happier... until we got it home and realized she didn't know how to use he brakes...
I was wondering why her shoes weren't lasting... I guess they make for some good brakes... (sigh)

Apparently I can't wait for Halloween because I inadvertently came dressed up as MarryAnne from Gilligan's Island. (Remember that show? Oh how I loved it!)

We set up a playdate for Sister and her best friend each Monday of the Summer and it was such a success. Here they are at her best friend's birthday party!

I know I said this post was only about us girls but Brother snuck into this one because me and Gracie took him to see "Malefiscent." I'm so thankful that Gracie is one of those girls in our life. She brings a lot of joy and happiness!

I guess I was still excited for Halloween! I was a so excited when I found these glasses at a yard sale! Woo hoo! In the top pic I look like Jeremy from Studio C!

And this last picture, I just love.

It's one of those pictures that just explains Baby.

She is completely content to be swinging in her hammock.

Complete calm.

Independence Day


Baby dancing with the flag that the Youth of our church put out on our lawn for the Holiday.

Has a new meaning to me since our Europe trip.

I view America's independence with much more reverence and admiration for all that was done for our country to be a country of it's own and what a new world it truly is here.

It's quite humbling really, to realize why so many people watch the U.S. in all its failings and successes. There's just something about watching someone, or something struggle for success and rewards.

I guess that's why there is something to be said about the reality shows that are all the rage. There's just something about watching something real unfold before your eyes.

I have had the opportunity, recently, in fact it just went to press today, to design a book for a 94-year-old war veteran and POW from World War II! I don't usually promote the people I do design work for, but I am quite proud of this project and I have to say that I am quite proud to say I know Lester Tenney through becoming his designer for his book, "The Courage To Remember," a book about his journey through Post Traumatic Stress Disorder. Truly amazing and inspiring.

When you see this cover, you should get it so you can read it! And my name is in the Acknowledgments so that is just cool...

I am amazed at what we, humans, can do. What we can go through and still overcome and thrive.

I was reminded on the 4th of July of the independence and dependence our children have. They live in an independent country, but, because of they're challenges in life, they will always be dependent on us or others to help them through it.

Of course mine and Marc's goals are to have them become as independent as possible. That's all we hope for, really.

On the 4th of July, though, I realized how dependent Marc and I are on our family, friends and neighborhood to help us with our children.

As Sister and Baby got scared from all the fireworks everyone was trying to help them and console them to help them have the ultimate "4th of July Experience!" Although all efforts failed and led to Marc taking the girls home in a tangled and shivering ball of nerves after only 5 minutes of actual fireworks, it was just good to know that even though we are not ready for our own independence, we have so many surrounding us who are holding our hands until we get there.

The girls had fun until it got bright and noisy. They love the glow sticks, a real tradition for our family on the 4th!

Father's Day Frisbee Family Fun

Sunday Dinners at our house can be quite a bit of fun!

Especially when you turn it into a Father's Day dinner!

My parents, Marc's parents and our cousins, Cathy and Jerry had dinner with us to celebrate and it was such a nice evening that we all just sat around enjoying each other's company.

And taking crazy pictures with Grandma Lynne

... and cousin Cathy

Baby doing what she loves...

looking adorable...

and swinging!

After a while we were throwing the frisbee around and it turned into a cup-tower-tossing-knock-over game. I didn't have my real camera but I caught some pretty sweet shots on my iPhone camera!

It all started when my mom was trying to teach Baby how to throw and catch a frisbee

Marc stepped in and it was funny to get shots of Baby's reactions

She's getting ready to catch it here

Now she is throwing it



catching... are you starting to see the pattern

Marc decided she needed a little help on her form. I mean, seriously, I love this man!

She loved the attention.

Then teaching turned into competing!

Come on Gary! You can do it!

Gary actually did knock over the cups, I just didn't get a shot of it... below is the shot when I thought I had "the shot" and it was the frisbee hitting my phone as I ducked! Tee hee! It's dangerous work, this action filming! 

(That's the red frisbee in the top right corner...)

My mom takes any competition quite seriously... she's got on her game face...

Ta da!

We finally talked Marc into joining in on the competition but we could only get him to do it if he didn't have to move from his seat... seriously! I love this man! Ha ha! Above you can see the frisbee midway to the cups, his first try was a miss.

But, his second try was nail on! Cool shot too! Not bad for an iPhone.

Lynne didn't toss the frisbee, but she wore it quite well!

I'm so thankful for my family. We are so truly blessed! I know I say it all the time, but I really feel that if I don't express my gratitude often that I will become complacent in noticing and counting my many blessings! My goal is to be thankful in everything! I hope it's working!