Wednesday, October 9, 2013

super powers

October brings a lot of things to our house. A lot of fun, wonderful, beautiful things. But in 2009, it brought something that hadn't previously crossed our minds: Rett Syndrome Awareness Month. 

And because it's Rett Syndrome Awareness Month, our lives tend to be overwhelmed (usually in a good, positive way) with all things purple and Rett. Events are held, monies are raised and new friendships and connections are often formed. All good things!

Our focus, all month, is amazing individuals fighting the Rett syndrome fight every day. As well it should be. 

But, hanging in the shadows are some pretty amazing sidekicks that I can't help but notice are pretty influential in spreading the awareness we tout so much all month. 

They watch the seizures, endure the appointments and therapies, help with the feedings and learn the language spoken only with eyes. And then they share Rett syndrome with their friends, classmates, teachers and teams. And they do it from the moment they wake up until their heads rest on their pillows again at night.

They are siblings. And they are superheroes. 

In the words of one of my favorite sibling superheroes, Chloe, "I have super powers. I'm a Rett syndrome changing girl."

With every word spoken, penny fundraised, chin wiped, step taken, hand held or hug given with, to or for their sisters, they really are changing the world. 

Young siblings learn patience, kindness and understanding and then teach these traits to the people in their own worlds every day. Grown siblings have become doctors, scientists, therapists and advocates literally changing the lives and futures of many girls and women. And in addition to growing awareness, funding or performing research and improving perceptions of the world, they are changing the worlds of their sisters, making them more pleasant places to be. They are their sisters' voices, hands, number one fans. They are their legs, their hearts, their friends. And if someone doesn't have an actual sibling to call their own, they are immediately taken in by an extended family full of them. 

I love and admire Leah. And Claire, Avery, Henslee, Melia, Katie, Cristia Isabel, Emilia, Jillian, Samantha, Sorel, Lucy and more, more than words can express. 

But I also love and admire  Chloe, Nolan, Nixon, Owen, Abby, Melissa, Ava, Olivia, Griffin, Collin, Xander, Fischer, and Mason more than words can express. And I really, really love Kate. I love her for things she already understands and accepts and for a lifetime of those to come.

I love them for spreading awareness, painting their toenails purple, being helping hands. I love them for serving as sidekicks when Rett sydrome periodically takes the forefront and everything else is forgotten, and for being full blown superheroes every single day. 

One by one, they are Rett syndrome changing girls and boys with incredible super powers. In October and every month of the year.


Kelli Marshall said...

who is under the picture of kate and leah because that photo is ADORABLE!

Erica said...

OH EM!!!! amazing post. all true. love you to the moon and back!

Laura said...

So this post made me cry! What a beautiful perspective.

Zenaida said...

Oh those sidekicks are the BEST! What a beautiful post. Our girls deserve to have many, many sidekicks. I can't wait for Cristia Isabel to have some of her own. :)

Colleen said...

I keep trying to find the words to respond to this but I can't. This post is beyond words. All those faces, all those little world changers, make this world a pretty great place.

Amy said...

YEs, this made me cry too. I showed all these pics to my girls and told them all about Leah and kate and all these sweet kids. What blessings siblings are! I always love and appreciate your perspective.

Colleen said...

I'm with the other Colleen, no words. It's so much a part of our lives that it's hard to step back at times and look at all the parts and pieces that make this all work.