Monday, May 30, 2011
A fellow Rett mom shares her story "Why Girl Power 2 Cure, you ask?" on her blog: THIS STEFANIE MATTERS.
Why did we join Girl Power 2 Cure and why do we love them so much?
Best to start from the beginning.
When we were first diagnosed, we read about the old-school literature of Stages I through IV of Rett Syndrome, which in a not-so-scientific nutshell discusses our daughters normal development, regression, stagnation of skills, and rapidly deteriorating stage until the unspoken happens.
Where was the hope in that? We first brought Anna home from the geneticist and were under the impression that Rett was a death sentence.
Hope and joy were hard to come by. Full disclosure: on Anna's hard days they still can be, but nothing is as black as those darkest days. There are days now that Spring has arrived that I am at the park with the kids and I see a healthy girl Anna's age running, talking, playing... And I think, "Only 1 gene separates my daughter from you." Sometimes I go back to throwing stones at them but other times I can get through it by telling myself their mothers are going to be jealous of me when their girls are 16 and off riding in cars with boys on Friday nights and Anna and me are having a movie night cuddled up on the couch. Ah yes, bargaining! Works every time.
When we found GP2C, the "girl power" confused me at first. I was never a "girl power" kind of gal. But as I perused through their website and stumbled upon "Meet our girls!" I found myself in a symbolic garden of hope with beautiful photos of families and their girls, their moms, their stories, how old they were when they were diagnosed, what has helped them, what hasn't, where they were from.... Not only did I become a believer in "girl power" but here I was looking at these flowers - lovely gals - planted all over the country! How could we not be a part of this? I have become a girl power kind of gal who now has a flower power GP2C bumper sticker on the back of my car. The cynical me is gagging right now. But she doesn't much exist anymore...
Monday, May 9, 2011
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!