We are the Brooks from Irving, Texas! My wife Kristy and I have 2 daughters, Juliana age 12 and Olivia age 11. We’ve been a part of the Girl Power 2 Cure family since Juliana’s diagnosis in December of 2008. GP2C’s cause and mission has always been so important for us because we made the decision early on after Juliana’s diagnosis that we needed to focus our efforts and attention on all that Juliana could do and not what she couldn’t. That’s what we are trying to teach both of our girls; the possibilities are endless and when you shift your mind in that way, there’s nothing you can’t overcome. And our youngest Olivia, well, she’s ready to take on the world in a grand fashion. I like to say Olivia has grit, wit and the biggest heart you will ever find. They are best friends through and through.
As many know, Rett Syndrome is often relentless and some days it’s so hard to do anything. But our community, our family and friends give us the support we need to power through, get over the challenge and look forward. As I was looking for some pictures to share, all I could find were candid shots and selfies of places we’ve traveled, parties and good times with friends and family and I thought, this is exactly what our life is- candid, in the moment, nothing scripted, all about the now. We are silly, laugh a lot and have fun.
It wouldn’t be fair to say we never think about “what if’s”, what if Juliana didn’t have Rett, therapy, seizures, not being able to walk, talk or use her hands and then something stops us and says, hey, you can’t think of those things. It’s not fair to any of us, instead know that we are doing the very best we can possibly do to live this wonderful life that God has given us. And, we’ve uncovered it’s exactly what both of our girls want- to see the world, do amazing things and live life to the fullest. Now, we also have to handle up on our responsibilities and accountability, working hard in school, doing chores, making sure we’re being good stewards in our community. Our girls LOVE to travel and I remember when we took our first trip to New York to see Rett Specialist Dr. Djukic. Kristy and I had no experience traveling with a wheel chair and all the bags and bags that come with traveling. Rett families know what I’m talking about. We just made the decision that we were going to do our best, communicate well with everyone involved and go after it. Low and behold, that first trip exceeded everyone’s expectations. What we hadn’t expected was two little girls that fell in love with NYC- all the hustle and bustle, shows, action and walking the streets of Time Square. They loved it and confirmed for us that no matter how hard it was going to be, we were going to go after it with the same passion we try to do in every part of our life.
Education has always been so very important to us. Kristy spent 15 years in the classroom as a bilingual first grade teacher and has always been extremely passionate about literacy. In the beginning, and I’ve told this story often, when Juliana started school we kinda wiped our brow and told ourselves, great, they’re gonna know what to do with her. Well, we quickly found out that wasn’t the case. And in hindsight, I remember how frustrated we were but now understand that Juliana showed up with so much complexity, no one had experience dealing with a student like her, so, they made assumptions about what she could and couldn’t do and we quickly learned we were going to have to change that for them and for her. With the right access, tools and resources, Juliana soon showed them what she was able to do. Now, that didn’t happen without some blood, sweat and tears but it happened, nonetheless. Today, she’s in middle school, in a gen ed environment all day long, reading, writing, actively participating in class and throughout her day as typical as she can be. She has a lot of support and she is surrounded by those that believe she can and have invested in learning HOW to teach her via Rett University. That makes all the difference. We have seen firsthand how her school experience has had such a positive influence on her own development and physical health too. Does she get frustrated that she can’t often do what the others can do, of course. And we talk with her, WITH HER DEVICE and say hey, I’m sorry, there’s a lot you can do that others can’t, it’s just the cards that we were dealt and we’re going to be here to support you every step of the way. It’s okay to be sad, frustrated, angry, we just can’t stay there. We often see her feel better after we have these kinds of talks and help to get her head in the right place. Just like a typical kid.
It’s hard to believe it’s been nearly 11 years since our diagnosis with Rett Syndrome. Hard to believe that we have both an 11 and 12-year old. Because we haven’t aged, right? 😊 Instead, I like to think about it as we’ve gotten wiser, have a bit of a better understanding of the world and how we all fit in it. It’s often not easy but we do and we make our way. I’ll tell you this- we’ve got lots of life to live and we plan on doing it together no matter what challenges we face. We might get frustrated, sad, angry and even shed some tears but WE WILL GET THROUGH IT. I have no idea why God gave us two wonderful daughters and the challenges we have. I could spend weeks, months and years trying to figure it out. Instead, we are going to focus on living; taking full advantage of every moment we have together as a family. We’re going to teach the world about her and all that she CAN do and try hard not to focus on all that she may not be able to. We’re going to advocate for the cause, support our wonderful community to make impact for today AND tomorrow, share our story and help others understand that Juliana has Rett but Rett doesn’t have her. That’s the least we can do for each other.
Thanks for letting us share our story!
