Saturday, April 28, 2012

Golf for a Cure 2012

A huge THANK YOU to all that came out to support Golf for a Cure 2012.  When we find a cure it will be because of your generous donations!  Juliana, Courtney and all the girls with Rett Syndrome will thank you one day.  Until that day, we say it for them - THANK YOU!

Thursday, April 26, 2012

Mani-CURE for a CURE!

So back in March, we started looking around for Juliana's elementary school.  We looked at several different schools all with slightly different programs and classrooms.  We didn't really find quite what we were looking for UNTIL we walked into Kathy's classroom and we knew we had found what we were looking for.  She is an amazing general ed Kinder teacher and we just know that Juliana is going to thrive with her next year.  She is so interested in learning about Rett Syndrome, her computer and most of all HER!  She even joined us at our Golf for a Cure this year.  And in getting ready for the tourney, she went out and found a nail salon that could paint the Girl Power Flower on her nails along with Team Juliana painted on her nails. 

 Not only that, she even treated both girls to their very first professional manicure. . . complete of course with their very own Girl Power Flowers!

 After all that pampering she was OUT!

 Livi was a pro - she was born for manicures!

 Do you think she enjoyed it?

Wednesday, April 25, 2012

There Were Never More Devoted Sisters ...

Where to begin ... So first of all the girls are still happily sharing a room.  This is ideal for us because, although we have plenty of space up stairs for them to each have their own room, Juliana's Sleep Safe Bed is in my opinion WAY too heavy to move upstairs, and Olivia is WAY too young to be alone upstairs (Why did we buy a 2 story house?)  The problem is that Olivia is quickly out growing her toddler bed and their room is definitely not big enough to get her a bigger bed (Juliana's is a full size with a very large frame).  So, Olivia asked one day about a month ago if she could have a sleep over with Juliana.  It was spring break so I figured what's the harm.  Well, they both have enjoyed sleeping together so much that more than a month later they are still sleeping together.  Every night when they get ready for bed Olivia declares that it's "Sleepover Time."  So sweet. 

So, two nights ago, Juliana had gone to bed first while Olivia finished getting ready.  When I took Olivia to bed, Juliana looked a little funny to me.  Her eyes wide open and fixed on nothing.  She was holding her breath.  It may have been a seizure or maybe just a "Rett Episode". Who knows, welcome to my world of guessing.  Anyway, I started stroking her hair and just asking if she was ok.  Olivia, without skipping a beat, takes Juliana's hand and whispers, "It's ok mommy.  I'll take care of her."  And then I ran out of the room before she could see me cry.  I wasn't sure why I was crying.  At first maybe just because I was in awe of this mighty little four year old that so carelessly was going to "take care" of her big sister through the night.  And then I was crying for this little girl that was so little and so burdened.  I hate to use the word burden, but I just wish with all my might that Olivia didn't feel like she "has" to take care of her.  She is four years old.  I just want her to be a kid.   I looked at the monitor about 30 minutes later and they were both asleep holding hands. 

So, last night, the girls were in bed.  Juliana was asleep but I could see Olivia stirring.  Suddenly, I hear her sweet four year old voice whispering things to Juliana and I look on the monitor and she is stroking Juliana's hair, just as I had the night before.  I tried really hard to listen but I couldn't make out what she was telling her. 

This morning on the way to school, Olivia was a bit of a grizzly bear.  So I scolded her and told her this is why she needs to go to bed early and get her rest.  She started crying and said, "Mommy I was just telling sweet things to Juliana!"  So I asked, what sweet things?  She was singing a song that she had learned from school (Children's Discovery Center) called "I'm Something Special."  Here are some of the lyrics:
When Jesus sent you to us, we loved you from the start.
You were just a bit of sunshine, from heaven to our heart.
Not just another baby for since the world began,
There's been something very special for you in His plan.
That's why he made you special
You're the only one of your kind.
God gave you a body and a bright healthy mind.
He has a special purpose that He wants you to find.
So He made you something special.
You're the only one of your kind.
What amazing lyrics for some especially devoted sisters.  And it made me realize, while our situation is not ideal, and it does carry extraordinary responsibility, we have a beautiful family.  And Olivia is the way she is, because while she will go on to do amazing things in her life (of this I'm sure) maybe right now her purpose is to be an awesome sister and amazing daughter!  I mean she is four years old, I can't even obligate her to clean up the playroom some times.  She does all of these things because her heart is full of love and compassion and she doesn't feel burdened, I'm pretty sure she feels blessed.  I know I do.

Monday, April 23, 2012

3rd Annual Golf for a Cure!

Just 2 more days until the 3rd Annual Golf for a Cure in honor of Juliana and Courtney!  It's not too late to join the fun!  There are many ways to participate.  Obviously you can golf.  If you are not a golfer you can come to our amazing dinner with live band.  If you don't eat (ha ha) or are not in the area you can still participate in our AWESOME raffle.  Come on, all my out of towners - go to the website and get you some raffle tickets!  Just go online to the link below and register.  It will be a great time for a great cause!  And as an added bonus come meet the founder of Girl Power 2 Cure, Ingrid Harding!  She will be coming out to join the Texas Team for this great event.  Hope you can make it!

Sunday, April 22, 2012

On the Good Ship Lollipop

This past Saturday was the debut of the long awaited CDC Spring Musical.  They go all out and it was a very special night for the family.  The title of the musical was "Oceans of Fun" and Olivia of course played the part of the cruise ship entertainment. 

Here we are arriving at CDC where they actually have a red carpet moment where they walk across a crown of cameras
Check out her movie star glasses!

One last hug before the show!
And yes, I did make those amazing lollipops!

Click the link below to see them in action.  For some reason blogger wouldn't let me put in the video:(

Here they are - the old Mrs. West Crew!
Liv and her teacher Mrs. Devore!
Liv and Aunt Gale and Aunt Linda
Liv and her bestie - Faith

Thursday, April 12, 2012

4 Day Weekend!

So, the girls and I were off for a four day weekend.  Roger caught wind of this and decided to take off as well.  Suddenly, before I knew what hit us we were making plans for this amazing four day getaway.  This also happened to be our 12 year anniversary, so maybe the beach, maybe San Antonio.  All these ideas spinning and guess where we went?!  Wait for it . . . . . wait for it. . . . . . NO WHERE!  That's where.  We stayed home.  I'm not gonna lie, I was pretty bummed, but in the end it was just what we needed.  No hustle bustle and some good quality time with some amazing little girls.

So, first stop on Friday was the Fort Worth Museum of science.  It totally rocked!  We will be coming back, in fact we bought a membership, so if anyone wants to come, call us!

This is a pre-school play area.  They have a hospital area where you get to dress up and take care of babies.  Here we are weighing the newborns.

 This picture is hilarious because I was bent over helping Juliana and my hair came out in the picture.  When I saw this picture I didn't recognize the kid!
 Ok - that's better.  There's my Curly-Q
 Here Olivia decided they needed a bath.
 And then Olivia got called out for an emergency!
 Then she needed back up so she came back for Juliana!
 Here we are in a 3D movie about the area of Texas we live in and how it looked hundreds of years ago!
 Coming out of the mouth of a giant alligator
 Engineers of some sort.  Do you love Juliana's face here.  She is totally over this!
 And then there is the "Grossology". 
 I thought this would be fun right? With slimy stuff or what not.  NO, it is absolutely disgusting.  It talks about snot and burps and vomit.  But the part that made me sick is one where you had to smell things and identify what it was.  So you take a big whiff only to find out you are smelling feet, arm pits, a mouth and wait for it. . . . wait for it .. . . . . . . they actually had the smell of an anus!  Isn't that a little too far?
 So to wrap things up Roger and girls decided they wanted to get into one of those booths that simulate hurricane winds.  Juliana LOVED it!  So worth the $2!

Then it was Easter.  Here are my super cute (pinterest inspired) deviled eggs.
Olivia at church.  We would have taken a family picture but Juliana was out cold on top of me:(
Then Monday, for our last day off we went bowling!  Who knew bowling could be so fun.  Everyone one enjoyed it!

Check out those smiles!
Here is Daddy giving Juliana some secret tips he learned from bowling camp.  Yes friends, Roger went to Bowling Camp!
And despite the fact that I didn't go to bowling camp, I am so happy to say that I WON!!!!! First time ever to beat Roger, who came in second place.  Juliana in third place and pulling up the rear was. . . . . Olivia.