Two years ago today we got "the call" that confirmed our worst fears.....Brooklyn had been officially diagnosed with Rett Syndrome.
Thursday, May 21, 2009
WOW.......After two years, thinking back to that moment in time can still take my breath away.
We watched as this horrible thing called Rett took away our baby girl's voice, her ability to stand, crawl, and use her hands. We held her as she screamed through the endless nights of sleeplessness during regression and most of all we began to HATE Rett Syndrome terribly.
We were also surrounded by love, support, and prayer from so many family and friends that encouraged us and loved us (and still do!) Don't get me wrong, I still HATE Rett Syndrome and can't wait till our cure is found! But, my attitude has changed a bit....I have gone to work for an amazing organization called Girl Power 2 Cure, I have connected with SO many other Rett moms that have become my source of strength and their daughters who I have fallen in love with and are my motivation each day to work on raising awareness and money to fund research so that our cure WILL be found.....SOON!
Brooklyn is for sure my Rett Angel. She continues to amaze me each day with her strength, perseverance, and patience she has with the world. She has touched SO many lives and hearts it is truly unbelievable. I thank God for this precious gift and responsibility he has given me in her.
Today, on this anniversary, I can look back over two long years full of tears, as well as triumph but still look forward to our future and pray for a day our cure is found!
Posted by Kelly at 7:25 AM