RTS Conference 2010

Me & Emma at the Aquarium -
She loved the penguins!

We've been home less than 48 hours. I may never get caught up on the laundry or my sleep.

And it is totally worth it!

We had a great time in Covington/Cincinnati, meeting other RTS families, hearing new ideas on how best to communicate with and advocate for Emma both now, and in the years to come.

Having never met another RTS family in person, this past weekend was a delightful experience. Imagine having never been around anyone who just knows - really knows - and to find yourself surrounded by, oh, a hundred or so families who get it.

Emma and Caden (Tena's little man)

Tena & Me

Typical conversations included questions about diagnosis, school settings, medical issues, speech, toilet training and social interactions. But not once did anyone have to explain a behavior or deal with the look you're used to getting when you tell someone your pint-sized peanut is, in fact, 7 years old. 

There was an instant camaraderie - a sense of family - from the first night. There was no childcare available Friday evening and entire families congregated to hear the opening remarks from the organizers and the address from Mrs. Michigan, Stephanie Hunt, who happens to be an RTS mom herself and a vocal advocate for all children with rare diseases.

Brian, me and Cindy

The room was so loud, it was hard to hear the speakers. Now, this might have been an annoyance to some, but Brian and I kept looking at each other and laughing, because underneath the noise there was an omnipresent hum - the exact same hum that Emma has. It's hard to describe, but if you've heard it, you know what I'm talking about. Imagine lots of RTS sweeties, all humming at the same time in a confined space. It was noisy, but it was fabulous! We didn't realize that Emma's hum was characteristic of RTS, but it must be, because we heard it frequently.

Emma and Natalie (Cindy's little one)

I had a great time putting faces to names. Meeting Tena, Cindy, Kristi, Terri and others who I've "known" for years through the RTS listserve but had never spoken to before this past weekend. Even more fun was meeting their children - Caden, Natalie, Noah, Addie, and others of all ages.

Brian and James on the Duck Boat

Of course, we also enjoyed the Cincinnati area, particularly Newport on the Levee. We went to the Aquarium and had some Graeter's ice cream on Friday - Brian is now officially addicted. On Saturday, we took a Duck Boat ride and Emma & I got completely soaked when the boat hit the water. It didn't bother Emma though - she kept telling us she wanted to go on the "special ride" again. Sandra & I went to lunch on Sunday and had some yummy pizza (and more Graeter's) and then we all took a snooze before heading to the pool.

Emma on the Duck Boat -

Before the Soaking!

Emma and James had a great time swimming while I got to talk to some other RTS moms and Brian got to talk to some RTS dads and the whole pool was overtaken by RTS munchkins! It was fabulous!

Brian and I went back to Newport on the Levee, drove around some of the historic and ritzy houses on the Kentucky side of the river, enjoyed the view and got more Graeter's (Brian did - I didn't!).

Emma and Me on the Duck Boat -
After the Soaking!

Monday morning we went on a tour of the new Dept. of Developmental and Behavioral Pediatrics at Cincinnati Children's. The therapy rooms were enough to make me drool, and I'm not even a therapist. They were huge, open and just cool! We visited the Rubinstein library and toy lending library and got to meet a few people who helped to make the conference a success.

When we left, we headed back to Graeter's (I am not making this up!) to purchase some ice cream which they packed in dry ice - guaranteed to stay frozen for 36 hours. The fine folks at Graeter's sent us to the Mt. Adams Bar & Grill - legal since 1941! - and we had a lovely lunch and headed home.

The kids traveled beautifully and Sandra was a HUGE help! I had expected the weekend to be beneficial and informative. I hadn't expected to have so much fun!

Brian and his new love!