It was a whirl wind weekend, but it was fabulous! Going to Colorado and back in less than 60 hours was a pretty crazy thing to do, but I am so glad that we did it! The weekend was packed with lots of opportunity to listen to some really remarkable people talk about Rett Syndrome and it’s many facets and what we can do as parents to help. It is way to fresh to know what we heard in much detail. I am hoping that after I sleep for a few more hours my memory will come back to me. I have noticed that I am talking funny now after being at the conference. For example, we stopped at Chipotle on our way to the airport after a very long day of listening about lots of super important stuff. They were having happy hour, if you buy one Corona they give you a second one with chips and salsa for free, sold! Jared and I both stick our limes in and in the moment that you normally tip the bottle slightly to mix up the lime, I completely spaced out. If you do that for too long, you make a beer explosion, which I certainly did. But what was the first thought, clearly my synapses are not firing correctly and I don’t have an established motor plan for this (lately I have been sticking to North Coast Brewing= no fruit in beer) so of coarse there was a significant delay. Jared tried to tell me that he has communication apraxia and that when I tell him something that he needs to do, it only slows him down, clearly we listened way too much at the conference. On a caretaker level it was nice as I felt like it was way more affirming than Chicago was two years ago. We are actually doing some things right, who knew?!? Claire had the honor of getting her picture in Dr. Jone’s presentation about an enriched environment and Judy Lariviere shared a story of Claire’s recent success with her device with the one of the larger groups that she spoke to. There are plenty of things that we learned that have us fired up to tweak or change for Claire, but really I need to sleep before I can try to remember what any of those are. What is fresh and in the front of my memory are the good times that we had with friends, both new and old. I did feel a little odd when I met one mom that I knew through the blogosphere for the first time. As she would tell a story I could interject details because I had read her blog, awkward! But the coolest thing about Rett families is what would normally be an awkward conversation isn’t. They get how much the 3rd birthday sucks and the stress of a nap that goes too long or feeling like a failure because you didn’t realize how much pain your daughter was in after a fall and the crazy stress of super complicated hospital bills. They are normal just like us. That’s right, you read it right, normal! Because in Rettland everyone worries about seizures and weight gain and it is normal, and honestly, I like it there. Of coarse if there was a cure I would leave in a heartbeat, but so would everyone else. While we were gone the girls had a tremendous amount of fun. We surprised Claire with the game Pretty Pretty Princess once we were gone and from the pictures that were taken(at the top), it looks like she enjoyed it! From the looks of the pictures Chloe had a good deal of fun as well. Then again, when has she ever not?
4 thoughts on “Ain’t No Mountain High Enough”
whirlwind is right! man that was fast. so bummed we missed day 2. but it was awesome to get to see you, share lunch and meet Jared! yay! and of course our stint as rettettes! 🙂
Awesome! We were with you in spirit on Saturday listening intently to the webcast! I was so hoping they would move the camera into the audience so I could catch a glimpse of the rett families and see if I recognized anyone! 🙂 So glad you had fun even if it was only 60 hours!! Love pretty, pretty princess, Claire looks sooo cute with all the jewelry! Gotta ask what shoes she's wearing – LOVE them!!
Oh my, Claire is so cute! We are also using our newly acquired terminology, using male mutant mice whenever possible, which is more often than you wouod think.lol
I'm glad your girls did so well while you all were gone. Have q great week!
Bridget, The shoes are from Disneyland. She normally wears glitter Converse because they are easy to get over her afo's. I get them at Nordstrom.com. The regular ones are floppy but the glitter ones are rigid and you can loosen the laces to get the toes flat.