Monday, May 9, 2011

"Mom Message" from Kristy Brooks

Throughout May, we want you to meet the incredible moms serving on our Mothers Advisory Board. Today, we welcome Kristy Brooks, GP2C Mothers Advisory Board Member, as a guest blogger. Be sure to watch the video, Juliana's Story, linked below!

And So We Will Continue…
We received the news in the mail – a diagnosis of Rett Syndrome for our daughter Juliana. I never thought for a second that it wouldn’t be positive or I wouldn’t have opened the letter alone. I was six months pregnant with our second child at the time and my knees literally buckled from under me when I read the words.

I sat on the kitchen floor, crying all by myself. Why did I open it?? It only meant that I would now be the bearer of bad news. I should have waited, but I never thought it would be true. The only way to describe how I felt that day is absolute nightmare. I just kept repeating in my head – ‘THIS CAN’T BE TRUE . . . THIS CAN’T BE TRUE. Please let me wake up from this nightmare.'

To say that the days and weeks that followed were hard would be a huge understatement. Aside from the initial horror of the diagnosis, we now had to figure out how to tell everyone. No one knew what Rett Syndrome was, so having to explain every last painful detail over and over again was torture. After the pain and the hurt came the anger, the “Why me?” the anger at God. Not a good place to be. So we started looking for answers and trying to accept what this would mean for our lives - all while trying to maintain a job and get ready for the birth of our second daughter.

We survived the next couple of months but quickly realized we couldn’t live like this. We couldn’t just take this sitting down. There had to be something we could do.

Enter Girl Power 2 Cure.

Girl Power gave us hope again. It made us realize that this didn’t have to be a death sentence. You can’t understand the comfort in knowing that you are not alone. Our family was wonderful, but no one REALLY understands what you are going through like another Rett Parent. Girl Power gives us hope in all the research that is being done and all the potential it holds.

We quickly assembled a team, affectionately called 'Juliana’s Dream Team.' It is a team of everyone who loves her. And the magical thing is that the Dream Team just keeps growing. Over the last 2 ½ years, we have held 2 golf tournaments, 2 spaghetti dinners, one wine tasting and countless other garage sales and donation jars. And we aren’t stopping there.

We plan to keep going until Juliana gets her cure.

To see all the progress Juliana has made, against so many odds, gives us all so much motivation to find a cure.

And the motivation for all of this? An amazing little girl whose smile literally recharges you. Everyone who meets Juliana is instantly drawn to her. She has very special qualities and although she can’t talk with words, she grabs hold of your heart and you feel this instant connection to her. I actually feel so lucky and blessed to have this amazing child. She inspires so many people - I can’t believe that she’s mine.

If I could change things and take Rett away I would do it in a heartbeat, but I’ve stopped asking “Why Me?” in a negative way and started asking “Why me?” in a special way. What did God see in me to give me such a special angel? We still have our rough days but thankfully the good far outweigh the bad.

So we will continue.

Juliana will continue to teach lessons in love, compassion and patience. And we will continue to care for her and love her in the best way we can all while we continue the mission of finding her a cure. Keep an eye on my girl. She has and will continue to do amazing things in her lifetime!

1 comment:

Anonymous said...

Christy, Roger ("daddy-warrior") and the rest of the Girl Power 2 Cure - your unflagging heart, energy and attitude is truly inspirational! And not surprising, your efforts are paying off in amazing ways.