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! :)
The Gutierrez Family at the Disney Princess 1/2 Marathon with Team GP2C
OK
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.
Anna and her beautiful mommy Stefanie
Manny and his angel
Thank you Anna for your amazing spirit, your sweet little smile, your bravery beyond words, and your inspiration that will remain with me ALWAYS.
thank you for sharing your thoughts. They are my thoughts too.
Hug,
Kerstin and Lena
My heart breaks for Anna’s family. I am keeping her family in my thoughts and prayers. I continue to pray for a cure for this horrible monster. Love you and Brookie bunches. My heart goes out to all of you. Hugs
Living with Rett for almost 15 years, I thought there was nothing left of my shattered heart TO break. But once again, it does. I know I cannot make my daughter whole, but I’d hoped there would never.ever.be.another.girl.born. with Rett! We have come so far in the past decade: the genetic defect has been found, a mouse model, in vitro reversal…..HOPE. So never apologize for your tears-we all know too well why you cry, and never apologize for asking for donations. Funding for the labs that make this progress possible is entirely possible because families of our girls WON’T GIVE UP. Without fierce advocates, We can’t continue to make progress. With each precious angel we lose, my resolve to stop this strengthens. I know I will see the day in my lifetime that Rett no longer steals our sweet girls from us.
Kelly, what an absolutely beautiful blog you wrote. You put into words what most of us I think am feeling, afraid, deeply saddened, scared and just plain angry at Rett Syndrome! I have been thinking of the Gutierrez family many times over the last few days, especially today. Nobody should have to go through this. Bit you are right that Heaven just received another beautiful angel.
Kel, somehow you were able to put into words what do many were thinking… Are thinking! My heart aches…love you!
So sorry for Anna and her family. So sorry that our Kelly is a Rett mom. My heart is breaking for Anna’s family, and for you and your family as I read your blog…love you and miss you
It has been a rough week for me as well because Madison is only 5. Not much older then little Anna. It breaks my heart to hear of another little girl taken from us from this awful Rett Syndrome. Her family is in my thoughts and prayers.
Kelly,
I had only seen Anna and her family on “The View” on the internet and remember being blown away by their strength and positivity….I can only imagine how hard this is for you since you know them all personally and spent time with little Anna…I don’t even know them, and yet I am devastated at Anna’s passing because somehow they just feel like family and I am sitting here across the 7 seas with tears running down my face as I try to envision the loss they are going through. My love, prayers and condolences to all of you who have felt the loss, and especially Anna’s beautiful family. You are right, no parent should ever have to bury their daughter.
Kelly,
My heart is broken! I cannot imagine what each of you are going thru. Thank God for all of you mothers, fathers, grandparents and friends that each of these little angels have. Without all of you, these little angels would be never be “heard”! I so admire each and every one of you. Please know that all of you are in my thoughts and prayers. Please give your angels a hug and kiss from this “grammy”!!!!!!
Living with Rett in our lives for the last 21+ years has had ALOT of ups and downs. But now that I have so many new “family” members in our lives, those ups and downs aren’t nearly as lonely. I read your blog daily, may not comment much, but I do read your blog, and many others as well. I have many on facebook to talk to, that inspire me, that help me through rough times. But it’s times like these that we ALL seem to break down. I am pissed off too, I am sad, and quite frankly I wish the Rett monster would curly up and die, but without taking our girls with it. I HATE that Anna, and MANY MANY others, had to leave so soon! And, I HATE to ever think it could be my precious angel, or one whom I have met personally. Every time another angel gains her wings, I can’t help but to run for my angel, and hold on tight, and beg her to never leave me. I think we all do that! But know that, even though our girls have differences, like how some have severe seizures, or severe stomach problems or the like, they are all connected because of this terrible monster we have all begun to call the Rett Monster. Our girls all know each other, one way or another, and it’s kind of erie, but it makes sense. When they meet face to face it’s like hey, I know you! And know too that they will all do the same thing when they meet in Heaven again. My heart is torn from the loss of so many this year, as well as last year, and many years in the past. But reading your blog has made me ache, because I have felt closer to Anna’s family through you, watching them on TV, and reading about them through others on facebook. I applaud you Kelly, knowing how hard it was for you to sit here and write this blog, you made it happen. Your feelings are genuine, and you should not have to feel like this because of Rett! I believe all of us share your feelings! Each and every time! This is who we are as parents, as “family”, as friends! It makes me want to fight Rett even harder! And I don’t intend on fighting fair. Why on earth should I, Rett hasn’t played fair either! So, hear me now Rett Monster, you are going DOWN! NO MORE! ENOUGH IS ENOUGH! <3
i allso have a daughter with rett her name is gabrielle she is eleven so i can say its know eary journey and is very heart breaking