I have not been able to sit down and put into words the loss that occurred this week. To be honest, I probably still can’t come up with the words to share. If you have followed my blog for awhile you know that from the moment Rett Syndrome entered our world so have the amazing people….my Rett Syndrome FAMILY. There is no other word for them…..they are family. They “get me” completely. They share my hate for seizures, g-tubes, wheelchairs and all of the ugly “stuff” that comes with Rett and they share my love for the research, ACC communication, and blessings that our angels bring into our lives. It is like they can look into my heart, soul, and mind and know what I am feeling. Manny, Stefanie, Gabe, and Anna are members of that family.
This week Anna lost her battle with Rett Syndrome. She was a fighter in all sense of the word. She was more brave than I can even put into words, she CHANGED LIVES. I had the honor of spending time with Anna and her family a couple of times. The first time I met Anna was when I was in town because their family was on “The View” Anna’s daddy Manny worked as a camera man and was able to get an interview with the ladies about RETT SYNDROME. It was so amazing, and it introduced the world to Rett. Experiencing that with them was awesome, but like I told them that weekend…….meeting Anna and their family was way more cool than meeting the ladies from The View :) (sorry Whoopi if you are reading this!) They welcomed me into their home and immediately it felt like we were old friends. It was a weekend filled with laughs – and LOTS OF SNOW…we were almost stuck there (which, lets face it, would have been JUST FINE!)
The Gutierrez’s also joined Team GP2C for the Disney Princess 1/2 marathon. To share this inspirational weekend with them was AWESOME! Gabe ran in the kids races and Stef and Manny ROCKED the 1/2 marathon – I tell ya -this whole family rocks! Running along side them was….wait…they BLEW past me! :)
I am starting again – I do not think I have had to get up and walk away from my computer so many times when writing a blog post – ever….and I have blogged A LOT! The emotions that I am experiencing this week and as I write this are unbelievable.
EVERY Rett angel is special to me because they all remind me of Brookie. I have to admit though that once I meet them in person, hold them in my arms, look into their eyes, breathe them in….they become a part of my heart……I think that is why this is tough. Anna had a part of my heart. This tiny little amazing four year old had a piece of me that is now gone and I am struggling with that.
I believe in God, I do with all of my heart and He knows my heart so I am not writing anything that He does not already know but I am pissed off. I am pissed off and sad. I am pissed off, sad, and confused at all of this. None of this is fair. Rett Syndrome is not fair. It is not fair that Stef and Manny only got four years with beautiful Anna.
Lets add scared to that prior list…..
I am pissed off, sad, confused, and scared. When I sit here and think about Anna it scares me. It scares me that it could be Brooklyn one of these days…..and that is a thought I just can’t dwell on long. Because I can’t.
If you ARE a reader of this blog you also know that I ask for donations quite a bit – probably more than most of you would like to read about….But THIS is why – because treatments are close – our cure is close and because no mommy or daddy should have to bury their daughter. ever.
Thank you Anna for your amazing spirit, your sweet little smile, your bravery beyond words, and your inspiration that will remain with me ALWAYS.