Florida Bound

Well, after months of anticipation, the day finally arrived.  The day I, Kristy Brooks boarded a plane to Florida to run 13.1 miles for my daughter Juliana and all the girls with Rett Syndrome.  Never in a million years did I ever think that that phrase would come out of my mouth!  Wow, where this journey has taken us. . .

This is our hotel the Disney World Sports Resort.  Pretty Sporty.  You actually walk through the yellow helmet on the left to get to our elevators.  Kind of cool.

 So I got there that night at about 10pm and then the next morning we got up early to sign in for the race and spend the day at the expo to help raise awareness for Rett Syndrome.  It was huge!

This was the Girl Power booth where we hung out all day Saturday.  We must have handed out one million flower tattoos and GP2C info.  It was really amazing to see how many people actually wanted to know more about Rett Syndrome and the research going on.  It felt awesome to be able to share about our daughter with so many people.

Getting my bib was a little exciting and a bit intimidating

This was pretty cool.  Jeff Galloway was at the Expo!  I would have never been able to finish this race without using this mans system.  Thanks Jeff!

After the Expo it was time to pile into Ingrid's clown car and get ready for dinner.

This was a great dinner that Ingrid put together for our team.  It was so nice to get to know, finally in person, so many Rett moms that I had gotten to know from Facebook.

After dinner, one last stop.  To set up the Finisher's Tent.  And thank you Ingrid for the Awesome jackets - who knew Florida would be so cold!

Wienermobile in Irving

Yes, folks, we are that cool!  On Friday, February 24th the Wienermobile was in Irving, TX and all about helping raise awareness and funds for Girl Power 2 Cure!  Sad to say I was not there because I was en route to Florida for my big run.  Thanks so much for all of our Team that really helped rock this event out.  And thanks to Yoli and the Oscar Mayer Team for coming out and supporting a great cause!

Here is the Children's Discovery Center Crew - all with their Wiener-Whistles!

 Yoli and the Family

Thanks so much Yoli and Reese for rocking your hot dogs off!

 Juju getting her Wienermobile sticker on!

 Livi's wearing hers close to her heart!  (She REALLY does LOVE Oscar Mayer Hot Dogs! It was a dream come true for her!)

 Next getting her GP2C Flower Tattoo!

 All set!

 So many people came out that night!  So nice to see so many friends!

 Livi taking a break in the wiener

 And this is most of the amazing team that made this night possible!  From the bottom of my heart - THANK YOU, WE LOVE YOU!

Dallas Thrive Magazine

Just had to brag a bit about our recent magazine cover!  Check out the link below for the full story!

http://www.pageturnpro.com/Dallas-Child-Magazine/36297-Thrive-Spring-2012/index.html#1
or read below:
Kristy Brooks

By Christi B. Steckel

If you’re curious what hope looks like, just look into the eyes of Juliana Brooks. She’s a 5-year-old girl who’s smart and beautiful. She has so much to say but can’t say it … yet. After developing normally for the first year of her life, she was diagnosed at 2 ½ with Rett Syndrome, a neurological disorder typically found in girls that affects her ability to walk and talk. She and her family – mom Kristy, dad Roger and sister Olivia, 3 – live in Irving, enjoying each day as they await a cure.

How was Juliana diagnosed? When she was born, everything was perfect. She was always happy. At nine months she was babbling and crawling. Life was great. She started to miss a few milestones, but the pediatrician told us it’s OK – some children are slower to develop. We waited a few months longer, and when she was a year old, it felt like overnight she stopped talking, stopped crawling. We went to a neurologist and got a very discouraging report. We asked what we could expect, and he said on a good note, she may be able to sack groceries; on a bad note, you’ll be taking care of her for the rest of your lives. We were sent to a geneticist to test for Rett Syndrome, and when we got the positive results we were just shocked. The ground went out from beneath us. We went through a depressive state for a while, but that is when we found Girl Power 2 Cure. We have a lot to be hopeful for; they’ve been able to reverse this condition in mice, so a cure is possible. She has a local neurologist and also works with Dr. Sasha Djukic, the director of the Rett Syndrome Center at The Children’s Hospital at Montefiore in New York. Meeting with her changed our lives. She gave us new tools for communication. We were really at a loss for how to communicate with her, and she introduced us to the Eye Gaze computer that Juliana controls with her eyes to speak.

What is your involvement with Girl Power 2 Cure? Girl Power 2 Cure (girlpower2cure.org) was our savior at a time when we were really down and uncertain with what to do. They are all going through the same thing we are. Roger serves as the chairman of the board, and I serve on the mom advisory board. The mission of Girl Power is raising awareness and funds for Rett Syndrome research. Our big fundraiser is a golf tournament on April 21 at the Indian Creek Golf Club in Carrollton.

Hardest part of the journey? Initially looking at what the future was going to look like was very, very difficult. We had to learn to look at the progress she makes. Now she’s thriving and she’s 5, but it’s really hard because she’s starting to understand her limitations. She’s a typical 5-year-old girl, except her body doesn’t do what she wants it to do.

Proud mom moment? I got a note from Juliana’s teacher that said, “Everything I asked Juliana to do, she said no. She refused to participate.” I put on my serious face and told Juliana that is not OK – we’re going to look on your computer and find “I’m sorry,” and when you get to school tomorrow, you say you’re sorry to your teacher, and she said yes. So I wrote in her notebook to her teacher, “When you open Juliana’s computer, she has something to say to you.” So her teacher wrote back, “I turned on her computer, but I was really confused because all she kept saying was, ‘I was just kidding.’” That little stinker didn’t want to say her sorry. We were excited she did something a typical 5-year-old would do.

What is her relationship like with her little sister? It’s beautiful. Olivia sees nothing wrong with her. Juliana is her big sister, and she wants to do everything Juliana does. It’s still difficult when people ask what’s wrong, and it breaks your heart to have to explain every time. One morning, one of Olivia’s friends asked, “Well, if she’s 5, why doesn’t she talk?” I immediately froze and thought, what do I say, what do I say? And Olivia, without missing a beat, said, “Yes, she does talk. If you ask questions like, ‘Juliana, do you want juice?’ and if she says yes, she turns her face like this, and if she says no, she goes like this, and she has a computer and can pick all kinds of things to say. She can talk.” I thought, this 3-year-old child explained it so easily. I’ve stolen her answer several times when people ask.

How do you help Olivia understand her sister’s condition? We haven’t really had to explain it. She’s grown up with her. She sees the things we do for her, and she wants to do the same. If we go outside and I put their juices out, she gets Juliana her juice first. She’s very helpful and knows no different.

What is Juliana’s personality like? She is a fighter. She never complains; she’s very patient. She’s hilarious – she can make you laugh, she has the most contagious giggle.

I can tell you and Roger are a great team. Talk about how your marriage helps you through this challenge. I don’t know that I could do it without him. We complement each other. Juliana loves her daddy; she’s a daddy’s girl. It’s a four-way partnership. Everyone in this family does their share, and it’s not a job to us.

One thing you’re thankful for … I’m very grateful for her doctors and the people conducting this amazing research to find a cure. This condition may very well be the first neurological condition that is completely curable and reversible. The wonderful thing is, her brain is completely intact, it’s not degenerative and she’s not getting worse, so whether this cure comes tomorrow or in five years, she’s going to be cured.

Wienermobile is Coming to Irving

Yes friends, it's true.  The Wienermobile is coming to Irving, TX!  And better than that. . . . . . . . . it's coming as a fundraiser for Rett Syndrome.  So if you will be in the area this Friday, head to the Irving Art Center and have a yummy Oscar Meyer Hot Dog!

Olivia's Birthday Take 1 - The Kid Party

So, let's start off with a little known fact. . . . I don't enjoy having a million kids in my home.  I know shocking, right.  I know, for a teacher, this shouldn't bother me, but it does.  I'm totally down with having 20 kids in class, just not in my play room.  So for the past several years we have had Olivia's party at a really cool park in Irving.  The problem with this, as you may know, is that the weather in North Texas changes drastically in winter and there is no way of predicting it.  The first year we had it there it was FREEZING!  Last year was pretty cold but super windy.  So as you can see, regardless of the weather, we have always just bundled up the kids had it at the park, because I would rather freeze for a few hours than have a houseful of munchkins - is that wrong of me?  So this year, the plan remained and we got ready for another park party.  It was looking really promising since the weekend before it had been sunny and 75 degrees.  Awesome right?  Not in North Texas.  On Saturday, February 18 it was 40 degrees and raining all day!  How is this possible.  So in a last minute decision, we knew we had to move the party to Casa Brooks.  Thank God I had Marisa there to help.  We "cleaned" up the playroom (and by clean up, I mean took out about 95% of the toys, or as Roger told me "I sucked the fun out of the room") and got it ready for the party.  Apparently I left some fun in there because we had no complaints:)

 Faith & Zelma

 Time for cake!

 Make a wish!

 Present time!

 So, oddly enough, I don't know who she takes after, but she LOVES being the center of attention.  I hated opening gifts in front of people, and she LOVES every second and put on quite a show.  Notice my face - That was my "going a little overboard Olivia" face.

 I'm not sure what I was saying here, but I promise it was NOT shut up.

 Don't know what Olivia was saying here but I promise it was not shut up!

 This was from her best friend Faith, who I am embarrassed to tell you that she asked her to buy her some Tom's for her birthday.  She even told her what size and all.

 Thanks for the Tom's!

 Trying them on

 And I'm pretty sure this is where silly just got out of control.  She was totally working the crowd.

 This was from Juliana.  For Christmas, Juliana had bought her some tights that apparently were baby tights because when Olivia put them on, the crotch only went up to her knees.  So she cried real tears and asked Juliana "WHY DID YOU GET ME BABY TIGHTS FOR CHRISTMAS!!!!!" So Juliana felt like she needed to make up and bought her some big girl tights.

 Then the old "put the gift bag on your head" trick.  Always great for a laugh!

 This was a Mickey Mouse watch that truth be told Roger found in a drawer that we had and I'm not 100% sure where it came from.  Probably from Auntie Laura, I'm guessing, but Liv sure was excited when she opened it!

 And this was a card from Kolton, a card which he wrote himself and then even offered to read aloud to her.  It went like this:

Who is. . . .

A person nice and sweet,

Someone who you might meet,

Someone who came to your Pumpkin Party.

Who is it?

Kolton

 More dramatics with the gift opening

 Yes, you guessed it.  It's her very own bento box (Japanese lunch box).  Love it!

Thank you everyone for a great last minute inside birthday party!