National television coverage. Wow! The Gutierrez family was brave and heroic as they shared their journey with the world. Brave because they spoke about the difficulties they face every day in an articulate manner, and heroic because of the way they cared for their daughter.
I was touched by the way the entire cast handled sweet Anna Gutierrez. She was not entirely happy. Not only was it a lot of people and sensory overload, but they were talking about her least favorite things. As Anna became increasingly upset, I realized it was just like Chickadee.
Chickadee hates it when I have to talk to the doctors and tell them all about the missing pieces since the last visit. It's depressing. She is-of course-always very quiet when I'm talking about all the marvelous things that she has accomplished. Unfortunately, to build awareness and to get her help Chickadee must endure being talked about. But she doesn't like it.
I felt the stress for Anna, and her Mom Stefanie as they described in detail what happens to a young infant/child with Rett. Anna moaned a little, but when they started getting into the details she full out yelled. I wanted to cry.
But?
I also wanted to jump up and down and shout for joy! What better way for her to demonstrate that she understands? To the lay person, it probably just seemed that this was a fussy child. But to me, I saw her quiet for conversation she liked. And objecting to what she didn't.
I also loved the View anchors as they handled the situation so beautifully that it brought me to tears. Anna was respected, treated with dignity, and allowed to exit before becoming a spectacle. Just my opinion.
I think it rocked.
Ann Marie let us know about it on her blog and said, "Monica Coenraads, from the Rett Syndrome Research Trust, was also there to comment. Hopefully, the exposure will lead to an increase in giving and awareness, and a closer date to our treatment or CURE!!!"
Amen Ann Marie, Monica Coenraads, and Gutierrez Family!!! Thanks for helping us all out. Please share this video. And add the request to please consider donating $10 to research
by texting the word RETT to 20222.
(I know. I'm terribly addicted to fundraising.)
Do you know any brave soldiers in your life that help you carry on? Is there anything that can help us get through the rest of the winter? What is your favorite hope?
Thank you for donating for Chickadee's service dog.
That's awesome that Rett was able to get some exposure like that.
ReplyDeleteMy niece doesn't seem to mind when we talk about her and her diagnosis but I know a lot of children are very sensitive about it.
Great to have this condition brought more out into the open and to inform people about it. I'd never heard of it until my current job where we have 2 individuals with Retts.
ReplyDeleteMost especially because it could be reversed with supported research. AND, because it could potentially help scientists in so many other areas to know what is happening. Parkinson's, Epilepsy, Autism, bipolar...the possibilities of ripple effect benefits are endless!
ReplyDeletexoxo
Thank you for shring. I didn't see this episode...
ReplyDeleteThank you so much for sharing this. One thing I didn't realize about Rett is that the mind/intellect of someone who has it, is intact! And it reminded me of a book I read when I was a young teen. It was about a girl with cerebral palsy and her name was Karen (http://en.wikipedia.org/wiki/Karen_Killilea). That book changed the way I thought about a lot of things.
ReplyDeleteI did happen to see this episode and I thought of you!
ReplyDeleteBefore your blog I had never heard of this condition.
Id missed this and I, too, am like Tami
ReplyDeleteBefore your amazing blog Id have said Rett what? and Im not proud of that.
Carla
That's beautiful JBS. And again my hairs stood on end with your lovely writing and the way you talk about the non-verbal communication.
ReplyDeleteDiggin on this post, sorry I missed it IRL. As always, your words make me smile and fill my inside with mushy fabulosity.
ReplyDeleteSmooches.