Saturday, June 29, 2013

This is the Place for Hope

Each year, the International Rett Syndrome Foundation holds a Family Education and Awareness Conference. Families, doctors, caretakers, therapists, teachers and more who are all affected in some way by Rett syndrome come together to learn, strengthen one another, support each other and grow. 

This year, the conference happened to be in Midway, Utah, which was perfect since we were already vacationing a half hour away! (In fact, we ran right past the hotel the conference was held in just the weekend prior during Ragnar!)

Knowing Ryan and I grew up in Utah, the Director of Family Support (fellow Rett mom, one of the most incredible women I know, and one of our good friends), Paige Nues emailed to ask me if I could help create a theme and design a logo. 

Feeling a little (okay, a lot) overwhelmed, I stared and stared at my computer one night when a phrase just popped into my head:

This is the Place for Hope. 

That was it. That was the theme for the conference!

The phrase, "this is the place" is well known in Utah. It was the phrase uttered by the first settlers of the Salt Lake Valley. They had traveled a long distance, there was turmoil, and there were many tears and innumerable trials along the way. 
And yet, they had hope. 

They had hope that the Salt Lake Valley held a positive future for them. They worked hard together once they arrived to make their hopes a reality. This has great similarity to those walking the trail of Rett syndrome. With the IRSF and all members of our Rett syndrome family, we can have hope! 

My good friend and an amazing artist, Laura Clarke Hawkins, selflessly painted a picture for the conference of Midway with Sego Lilies (the Utah state flower) to go along with the logo. Sego lilies were a source of strength and sustenance for the settlers of Utah, and the IRSF and our Rett syndrome families are a source of strength and sustenance for everyone who is a part of this journey.

It was fun to see the theme and and an image of the painting splashed across the website prior to the conference, and the projector screens, the programs and posters throughout the weekend. Knowing I had a small part in the conference made it that much more meaningful. 

Ryan and I were able to stay in Heber at my fabulous aunt and uncle's house. They were so gracious, letting us come and go as we needed and providing us with food, our own little corner of their home and great company when we were there. 
We attended classes on nutrition, family financial planning, communication, clinical trials, dialogue with doctors, eye gaze, genetics, literacy and simply understanding Rett syndrome. 

I saw old friends I hadn't seen in two years, met some for the first time in person after "meeting" online, and created new friendships I know will last throughout the years. 

It is always such an uplifting weekend to be surrounded by a group of people who just understand our particular situation. Some are thrown into Rett syndrome, like us, and others choose to be a part of it. But either way, we're all there learning more because we care and we want nothing less than the best for Leah and her peers. 

It truly was a place for hope.

Miss Ribbons on top of a pile of conference buttons. 
Each attendee wore a button for the individual they knew with Rett syndrome.
 My button.
It made me happy all weekend.
 Friends old and new - Maren, Carrie, Patty, Erica, Marla, Ashley
 One of my favorite Rett girls, Melia. 
I finally got to meet her in person and I am smitten!
 My favorite Erica. 
Everyone needs an Erica in their lives.
 With Tanis, Melia's mom. 
So happy to finally meet her as well!
 With Mitch and Erin, who I had met before (Erin twice), but Ryan met for the first time. 
Fabulous parents.
 The amazing Paige Nues. 
One of the most incredible women I have ever been blessed to know.
 At dinner with the Maughans post-conference. 
So good to see them again and to know they finally have a diagnosis!

1 comment:

Erica said...

ive never been so honored. honestly! Im glad Im the erica in your life and that I get to have you in mine! love you!! love all the posts!