Two years ago today we got "the call" that confirmed our worst fears.....Brooklyn had been officially diagnosed with Rett Syndrome.
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!
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8 comments:
All of things that you do to help Brooklyn deal with her Rett are very evident in the photos. You can see in her eyes that she's a loved happy little girl and that's because you guys are so great with her!
Hi Kelly! No wonder you were on my mind the other day. I kept thinking, "I feel like Kelly needs a hug". So here is Texas-size hug -- you're an awesome mom, my friend. Chiot's run is right. Brooklyn is telling you (and us) through her eyes in every picture you shoot and share, how much she knows this. Here's looking at you, kid! Love to y'all!!
The above two comments said it all, you are such an amazing family. You may not know it but we think of you often. Have a terrific weekend.
D day is horrible. My thoughts are with you today Kelly
Sis ... I know this is Brooklyn's Blog but must tell you (and everyone who takes their time to read it) how inspiring you, Charlie and Brooklyn are to me as a Dad and a Grandpa!
Through your untiring effort, you have made Brooklyn's life better and also touched so many other lives over the past two years.
Moving to Indiana was THE BEST MOVE we've ever made (and as you know and your Mom will agree) ... there have been many moves over the years. However, we can't imagine being five hours away and miss seeing Brookie giggle and/or Jackson give her a hug.
Again, your friends say it more often and better than I ever could, but I sincerely believe one day the rewards for all you do will be great and we'll all be giggling like Brookie as we celebrate! LOVE, dad
Your dad totally made me cry :) Sending hugs to you and sweet Brooklyn.
I have been thinking and praying for you today. Big hugs as you get through this tough time. You are an amazing mom and (as the comments before mine say)a wonderful inspiration. Brooklyn is so blessed. We will find a cure for our angels!
pappy, you made me cry!!!
Kel, although this day sucks, that little girl is precious and perfect in so many ways.
I love you---
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