Thursday, February 27, 2014

I need some gasoline on my lips...

and other funny quotes from Our Life.

Sister get's really chappy lips so I am often applying chapstick or vaseline to her lips. Vaseline has become easier because she keeps hiding her chapsticks and the vat of vaseline is too big for her to bother with.

Pretty much every morning she says, "I need gasoline on my lips!"

"You mean vaseline, sweetheart," I reply with a little laugh.

"Ya, gasoline mom."

Brother is always watching documentaries, teen-based TV shows and listens closely to his peers, so sometime he'll say things that surprise me. Things that any other teenager would say and I wouldn't bat an eye but when he says it it makes me laugh and feel proud all at the same time.

Like when some one in the house does something a little "off" or out of the ordinary, he'll get this sly look on his face and smirk and say, "Well, that was interesting..." I need to record him saying it because it's as if it has a slight British accent with it... come to think of it, most the "smarty" things he says have a British tone. Hmmm. I guess he thinks the British are smart...

And if anyone just happens to be talking about Egyptians and say Tutankamun's name wrong he is right there to correct you on the correct pronunciation and proceed to tell you how he was tied to Queen Neffertiti or some other Egyptian queen. (I'm just hoping he doesn't come check my spelling...)

Baby, as I have mentioned before, is VERY sensory needy. You just can't hug, swing, roll or "squish" her enough. Yup, that's right. Squish. I can't call it hugging because a hug implies that it is sweet and cute and makes you feel loved and cared for.

"Squishing" as I have termed it is the forceful arms wrapped around her entire body with my face pressed into the side of her head and her legs tucked underneath while she wrenches my neck and face to a contortionist position and then she giggles and squeals with excitement while applying a constant and steady pressure. She has learned now, when she needs that, she comes to me and says "Squishies" with her eyes squinted and her face crinkled to symbolize how she wants me to make her feel... squished.

Marc and I have learned the little nuances of the our children's communication and have realized that, although, we totally understand our children, sometimes, outsiders don't.

I think Marc and I have had to come up with some of our own terminologies that, most likely, resemble the saying in other homes of children with Fragile X or Autism or the like.

In our house you'll hear things like:

"Marc, can you go roll Sister?"

"Honey, can you pry Baby from Sister's neck so that I can squish her?"

"Hey, can you clean the clay, coloring books, crayons, markers, colored pencils, paper, Pokemon cards, receipts, bills, laptop and anything else that Sister has hoarded and packed onto the table so that we can eat dinner?"

When a child is out of control hyper or out of control upset we look at each other and one of us, without fail, will ask, "Did she/he get her/his meds?"

"Marc, can you pry Baby off of Brother and squish her?"

"Did you wash your hands? Really? Let me smell them?"

"Sister! You don't say stuff like that to people!"

"Brother! Don't put your hood over your face when your friends sit by you."

"Marc, can you come pry Baby off my neck so I can squish her?"

"I can't right now, Rachael, I'm trying to get Sister to tell me where she put my wallet!"

Oh, yes, it's fun.

Photo by Pointe Digital Photography back in 2011

Tuesday, February 25, 2014

Mini Me...

The Brother version!

We love Zac! I think we'd love him no matter what but I sometimes feel a bit of a special attachment to him because he does remind me of how sweet Brother was when he was little.

I miss having people stop me in the super market or at church just to smile back at Brother, comment on what a delight he is or to say that he "brightened" their day.

Now I get to hear my sister, Kirsten tell those stories.

Sometimes I'm jealous that she gets to experience this stage as I miss it so much with Brother, but there are times that I am so thankful I am far passed it... far, far passed.

Why are Zac and Brother so much alike?

They're cousins.

They also both have Fragile X Syndrome, the world's leading cause of inherited mental impairment, the leading known single gene cause of inherited autism and can cause ADHD, loose connective tissue, hyper flexible joints and a few other things... (click here to learn more if you want)

It is truly amazing how two boys can be so different, but because of the nature of their chromosomes they have so many nuances that it is almost like watching Brother grow up all over again.

Granted, Zac is doing more that Brother did at this stage, but it really is interesting to witness the similarities.

This is the rocking horse that Brother had as a baby and used it till he was 5 or 6,
then Sister used it till she was 5 or 6 and now Baby is running it daily!
This horsey is well loved and Zac knows it and loves it too...
let me just think it is all nostalgia and not just the fact that all four of the
aforementioned children have sensory needs that could overwhelm a woodpecker.

 The thing that I love the most is the connection that Brother feels with Zac and watching how he takes such good care of him. Watches over him and makes sure he feels loved. Brother takes every opportunity he has to be a "big brother" to him.

After all, Brother is a pro...

he's already helped raise two sisters with FXS, 
he's totally got this!

Monday, February 24, 2014

Measuring Up

This is a picture of my hubby, Marc, with his cousin, Teresa.

I'm not sure what makes me smile more; seeing him so small, his cowboy pajamas, his little boy hair cut or just being able to see a moment from his past.

He's 45 now.

I'm 37.

I remember when I was in high school I thought the world would end before I became 30 because that seemed so far away. And then when I was 23 and had short hair I decided to grow it out and said that I would cut it again at 30 because I would be too old for long hair by then...

I remember when I was 18 and I first saw Marc at work. He really caught my eye with his good looks, twinkling blue eyes and sly smile. But then I found out he was 26... "Ick!" I thought, "he is way too old!"

It's so funny what time does. It makes age seem so insignificant.

Almost as if it doesn't matter, you are who you are and you just want to measure up to your potential and your dreams regardless of your age and what people think you should be doing at your age.

One thing, though, that certainly has no boundaries with age... is death.

My uncle, only 58 years old passed away on Sunday.

Thinking of me turning 58 makes me feel old, but when I think of my uncle passing from this life at 58... it seems way too young.

I love my dad's family.

My dad is the oldest of his siblings and my uncle Mark was just younger than him.

I grew up most of my young life with my Uncle Mark as my neighbor.

We all lived on the same road: my uncle, us and then my grandparents all next to each other on the large dairy farm separated only by hay or wheat fields.

I remember my Uncle Mark and his family when they were young.

Then time seemed to change a lot of things and I didn't get to know them again until these last 7 or 8 years as we have tried harder to have more family reunions.

The most recent reunion was just his January where we gathered to celebrate Christmas! We played games, talked, laughed, told jokes, hit a piƱata, made crafts, ate and enjoyed getting to see many of our family.

Mark was there.

He was so happy.

I was happy to be there, but didn't think much of it then. It's not like I thought it would be the last time I would see my uncle.

But, it was.

I think that we spend much of this life trying to measure up to what others want from us or think we should be or do.

In the end, all that matters is that our life had measure. That every inch and every mile we traveled, literally or spiritually, are full of experiences... giving our lives full measure.

Thank you Uncle Mark for measuring up.

At our Summer Reunion 2013 filling up water balloons for his chance to get even... (smile)

Saturday, February 22, 2014

My birthday really stunk!

So, it is true.

The rumors you may have heard are true...

I am indeed 27!

OK, so that really would have been a rumor. I turned 37! 
And as I have said before, it was the best 37th birthday I have ever had!

(Ha! I hope by now you have caught on to my humor.)

Really most of the festivities for my birthday weekend were not actually meant to be for my birthday, but let me tell you, I'm claiming it all because it just made it all that much more memorable.

On Friday we were invited to a friends house for a traditional Swiss meal. It was cheese, and potatoes, and cheese, and veggies, and cheese, and fruit, and cheese, and bacon, and cheese... did you catch on there there was a lot of cheese? Mmmmm! I love cheese! So this, to me, started off my birthday with a bang!

There was this really cool skillet-type-thing in the middle of the table to cook the veggies and such on and then underneath you would but your miniature skillet of cheese to melt so you could pour it over all your food. Yummy! I think I love Swiss food! In fact, I even tried a banana wrapped in bacon and cooked on the skillet.... I know, sounds weird, but it was delicious!

So my all weekend party started of with a Cultural event!

 (Desiree, Bethany, Jim, Marc, me and Irina (and Josh taking the picture)

So, of course when you eat a bunch of cheese for a late dinner it is obvious that we would need to exercise afterward, and what better way to exercise than at night, hiking through the snow, in the dark with a little full moonlight.

The 6 of us got on our snow gear and went out for a short adventure.

I've never been hiking in the snow at night. It was so much fun. Irina and I even found a little sled hill along the trail and tried "sledding" down it on our butts... didn't work too well but it sure made for some fun times while we tried!

So that was the Adventure part of my all inclusive weekend of birthday celebrating.

Jim fell into some deep snow... OK, OK, he just knelt down in it and we all laughed... maybe you had to be there...

We found someone's left over snow fort so of course,
all of us being mature adults, we had to climb inside and take a picture!

Then on Saturday night we had a party at Amanda's (our friend and next door neighbor) and I planned some parlor games and everyone brought food

No one would let me take their pictures because some of the games were a little silly and I didn't want to embarrass any one... or maybe I just wanted to get a video of it together and just didn't get it up yet...

That part of my birthday weekend would have to be called the Hilarious Part!

Sunday afternoon we celebrated my birthday and Valentine's Day at my parents. Of course it was fun.

That was the traditional part of my birthday weekend!

And because my birthday fell on a holiday weekend we were able to have 4 nights of fun!

This last activity was the Cherry On Top of the whole thing!

PENTATONIX in concert in Salt Lake City!

We were so blessed to have been invited by our friends Emilie an Brian to come to the concert with them and enjoy great night of A Capella music at it's best!

We moved our way as far forward to the stage as was possible because I was so worried about Emily being able to see... she's a little height challenged. (insert little laugh here)

They came out right off the bat making a great impression
with stage affects and impeccable arrangements and harmonies.

Brian decided that Emilie needed to see at least some of the actual concert
instead of trying to peek through everyone's armpits... hee hee -- so Brian gave her a new point of view.

Yep, that's my ear.
Now as epic as this concert was, and it was, there was one thing that really stunk up the whole experience.

The color of the picture below is the color I am sure was on my face every time the mystery person near us in the crowd would release the "stink bomb!"



It was so bad it was as if I could taste it!


Marc, Brian, Emilie and I would look at each other in stunned amazement of the stealthy stench of this gas bloated individual! It was so horrendous that I actually even yelled out half way through the concert as the stench rose up and curled my nostrils, "Put a cork in it!" I know, mean, but seriously it was so bad that I couldn't stand it any more. People in the vicinity were escaping from the trenches, but we endured because we didn't want to be shuffled further back in the crowd.

Our noses suffered for our ear's pleasure.

So let me pause in the story for a minute here... if you ever have gas and you are in a situation where people are forced to be right by you then you must choose one of three choices 1) hold it in 2) leave or 3) have the decency to stand alone in a far away corner where people are able to get away from you more easily. Sheesh! Common decency is all I ask. I mean to let one squeak by during the two hours of musical frenzy is one thing, but to release the beast  of stench every 5-10 minutes is just torturous! Absolutley atrocious!

But, the concert!

Oh, the concert was amazing and made standing in the "stenches" bearable.

As luck would have it, when we got home from the concert that night there were some beautifully fragrant flowers waiting for me that a dear friend left for me while we were gone.

They were the best-smelling flowers I have ever smelled... I think... I'm not really sure as my nose had been exposed to such wretched smells that maybe even plastic flowers would have smelled good to me.

Friday, February 21, 2014

She's Got Her Mother's Moves!

She picked out her own outfit too...

She's a maniac!

Thursday, February 20, 2014

"Let's talk shop."

Ever heard that term? According to it is an idiom that means, "talk shop, to discuss one's trade, profession, or business."

Have you realized that all moms, and I do mean ALL moms talk "shop" all the time.

You could start a conversation about fashion and it will most likely end up becoming a conversation about how to get stains out of your favorite blouse, what temperature to watch your whites in to keep them whiter, and the cutest little itty bitty outfit you just bought for your little girl.

No, really, I'm serious. Come up with any subject... go on... give me a few and I'll tell you where it will end up if it's moms talking.

Favorite food ---------> how picky your kids are

Best sit-down restaurant ---------> which fast food restaurants have the best play areas

How happy you are to finally be on vacation to get a break from the kids ---------> how much you miss your kids and can't wait to get home and squeeze them


Hee hee!

But here are a couple examples of conversations turned "shop" when you are talking to a mother of a child with Fragile X Syndrome:

Searching all over town and the next 3 towns over to find the one toy that [Billy] wants for his birthday ---------> Going to 5 stores to buy 5 of the same thing that is  your Autistic or FX child's favorite so that you have a back up for the one that breaks "accidentally" and 3 more back-ups after that

Getting embarrassed about some one walking in on you yelling at your children/child ---------> how to explain why you are laying on top of your child wrapped like a burrito in a blanket, unrolling them and starting over again

Talking about toilet training ---------> poop art stories and mishaps

Yep, those are a few of the funnies when it comes to "talking shop" with Fragile X moms.

You know why I have a sense of humor.


Yep, it's so that I can laugh at you while I enjoy my life... 


Really, it's because I have to so I can survive the constant barrage of the never-ending battle of Fragile X. I have had to learn to laugh at poop ground into the floor, permanent marker on the walls and computer screens, having a child blurt out something they shouldn't, like, "You're fat!" or "Your nose is crooked," take pictures of every tiny mile stone even though the milestone has been hit 2-3 years past it's normal time-frame and this is the stuff coming from the 8 and 14-year-old... I'm just happy that my 4-year-old has learned how to play with her dolls and has started to be able to jump on her little trampoline.

But, maybe all this is what makes Our Life so exciting! We get to celebrate every little thing, regardless of the age it was finally done. We are just so grateful they finally got to that point.

Our Life is beautiful and ugly, rewarding and painful, exhilarating and exasperating, joyful and tearful.

We all have to make a decision on how we are going to take on life.

I saw a quote today on Facebook that said, "Life is like riding a bicycle. To keep your balance, you must keep moving on." —Albert Einstein

So true, you can't stop, you just have to keep going on, enduring each day and on the days that you are moving too slow to keep a steady balance God is there to make sure we don't fall.

I want to share some shop pictures that make me happy and keep my balancing act going... a bunch of them!

Sister found this deflated balloon in Baby's room and told her daddy it looked like a brain

Brother letting his fluffy little sister watch trains with him on YouTube

Sister's ever growing interest in collecting... anything... at any time...
Right now it's match box cars and Thomas the Train engines

Baby being curious in details (That's a green pencil sharpener she is holding,
 and above is her watching the shimmer of her Barbie doll's  dress.f

Baby getting into the hair stuff in the hall closet to do her own hair

I love seeing my daughters acting like sisters...
so cute sharing Sister's room to watch a movie together... probably Thomas the Train

Completely and almost literally into her My Little Ponies show.

Brother with his neighborhood peers at a youth activity. They had to finish the entire box of cereal and when Gracie texted me she said that Brother said, "We are not going to fail!"

Baby grabbing my camera and signaling to me the best way she can, that she wants to take pictures of us together.

Baby coming into our bed to snuggle and squeeze with us.

Brother getting so much joy in taking care of his little cousin,
He feels a special bond with Zac because they both have FXS.

Sister who is curious about everything, wants to learn everything and has realized she can learn a lot from her daddy. She was spotting hikers on Mt. Timpanogos with daddy.

So any time you want to "talk shop" with me about balancing life as a mom...

just make sure I'm not balancing anything at the moment and then I'll stop and talk shop with you (smile)

Thursday, February 13, 2014

You've heard of Bananas in Pajamas...

...but, have you heard of Animals in Underwear?

This is what happens when Baby is home from school with Sister's clean pile of laundry still not put away and the basket of stuffed animals in the room while I am trying to get some work done:

Ha!! Ha!! Ha!!

I think the horse and the penguin are my favorites!

So, that's the funny part of it and the celebration part of it is that she is trying to put "clothes" on her "dolls." Yay! Another milestone conquered!

And she is pretty darned proud of herself too!