Friday, June 22, 2012

The Big Easy

Well, here we are finally! Chad and I are at the World Rett Syndrome Congress in New Orleans! We flew in yesterday and it was a breeze...well not the part about leaving Lu! But I did it and we got to see her on Face Time this morning and she and Elmer are having fun with Grammy and Pappy! I was so nervous because I have never spent even a night away from her in her two years of life. When Chad and I go out for some brief alone time I still call mom at least once to see what Lucy is doing and then after a few hours I can't stand it anymore and need to be with her. But I won't get to see her until late, late Sunday night and then she will be asleep and no matter how much I miss her I will not disturb that!

So, when we got to the hotel last night, after meeting up with wonderful Julie Peden at the airport, and then meeting another Rett mommy on the shuttle, we headed out to look for some supper. As we left the hotel we ran into another wonderful woman named Paige Nues who works for IRSF and we said hi and introduced ourselves. She granted us the scholarship for one registration fee and when she realized who we were she just hugged and hugged me and looked at pictures of Lu and was so sweet! And when we told her about our first devastating appointment with Dr. Coffman she said she wants his name and phone number to educate him and I will definitely do that. Then in the next few moments I met the chair of the board of trustees for IRSF!

I said to Chad that it is amazing to me that this whole community exists for support and encouragement and help and these wonderful people will hug you like they have known you all of their lives because the majority of them have been just where you are and felt all of the things that you have felt. Which, it stinks that we have all had to feel these things, but it is such a relief to get to be surrounded by each other and to know that you are no alone. And this feeling of group support comes through strongly just through Facebook groups and email, but then getting to be with the actual people is certainly a million times better! I am so incredibly excited to be here and can't wait to learn all that we can!

Here is my favorite dialogue with Chad from yesterday as we were descending into New Orleans:

Me: "Oh my gosh I am just so excited! We are going to learn so much and it is just going to be so awesome! All of these experts are going to share all of their knowledge with us!" (paraphrased and picture that I am beaming and clapping my hands like a child at the thought of ice cream)
Chad: "You act like we are flying in to pick up the cure!"

Later when I relay this funny quip to Julie Peden she says, "You never know!"

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