Calm Amongst the Chaos

New Orleans was awesome! What a wonderful weekend! It was awesome to have some couple time, it was awesome to have a face to face meeting (for 4 hours 🙂 instead of a conference call) with the most amazing women I could ever possibly get to know and get to meet other CDKL5 moms and Rett moms that I have gotten to know and love via the internet. It was awesome relaxing in the big easy, drinking on Bourbon street and attending a tribute ceremony with amazingly awesome people. Get a room full of people who love and adore their child with Rett and CDKL5 and you find yourself at home. Friday Andrew and I ventured out a bit on our own with the thankful advice from my favorite Louisianan, Wendy, and ate.

Then we met up with other CDKL5 families and went to eat again! It was so much fun finally putting a face to a fb profile picture. We all got along so well it was like we were all meant to be friends. And getting to meet a few of our CDKL5 kids was so fun, the sweetest girls ever! And so inspiring to see some walk and even have words! CDKL5 can really vary and I enjoy seeing what other kids can do!

Saturday Andrew and I went to breakfast, again on the advice of Wendy, and had the best time. Then we walked, laughed, talked to strangers on the street, and went back to the hotel to lay out by the pool before I had to meet my ladies (board team) for a “little” meeting that went on for 4 hours.

And I would have been ok it going on for 8 hours. This is the best team of amazing woman! All with different talents to contribute, with hearts for our kids, working for one cause. Then Andrew and I broke off for again, yes food, and met everyone up for the tribute ceremony. I won 2 raffles and was so thrilled. I apparently won an ipad holder, but I thought I was winning an ipad. A little awkward, but not too bad 🙂 I did have a couple of drinks in me so I really shouldn’t have been trusted for much. At the end of the ceremony was a beautiful video of all the beautiful kids and of course it made me cry. THEN… we hit bourbon street. And I will let us all remain nameless and eventless because as much as they say what happens in Vegas, stays in Vegas…. it really should more so apply to New Orleans 😉

Sunday I woke up at 8am. And at 9am. And at 10am. And Andrew finally said you have to get up at around 11am. I did have a busy day. Oops.
Our conference started at 1pm and we got to hear from some wonderful speakers. We learned more about CDKL5 from the man who found CDKL5, John Christodoulou, all the way from Australia. Kind of surreal to ask him personally questions about our Lily and her faulty gene that really messed everything up.
We heard from the wonderful Dr. David Frame, our President of IFCR’s researcher hubby, he talked about research, where we are, where we need to be and goals for the future. We could have not got any luckier having Katheryn and David as our team leaders to finding a cure! Katheryn spoke beautifully about IFCR and we had therapists speak specifically on working with our kids. It is so eye opening to watch kids like Lily be able to communicate once they find the right device to do so. I have said this again and again, Lily has so much to say, we have to help her get it out!
My friend and fellow board member Kelly and I spoke on fundraising and media. I didn’t say much, showed a video I made of past fundraisers and hopefully inspired others to join forces and do what we can do!
Afterwards we all went out to eat and just talked and talked and talked. I met the sweetest little girl named Carly that reminded me so much of Lily at that age when I held her I didn’t want to put her down! Her parents I had just met, but we talked like old friends. Every moment was cherished. I love all my CDKL5 families and their kids and I just wish we could all live in a little neighborhood where we all can just be around each other all the time. But since that can’t happen I am glad to be able to meet up any chance we get! I love the energy everyone has to make a difference, to raise funds for research and to get the name of CDKL5 out there! Our goal right now is to get a big name to back us! Any tips from you out in cyberland we’d love to hear them!

Monday several of us got breakfast at Cafe Du Monde and we laughed when the menu was how many beignets you wanted. “What no eggs” asked Kristen? It was quite comical. But those were some darn good beignets, closest thing to them at home is a funnel cake from the fair. I loved that one last chat at breakfast with our friend and then it was all over. Time to head home. We had a great time, but I really wanted to see our kids!
Then we took a long trek home. A delay after another delay, after another had me antsy, I just wanted to see my babies but by the time we got home they were all sleeping so Tues morning was when I got all my hugs and kisses in.
So glad we went. So glad it was in New Orleans. So glad Andrew joined me. So glad that we were given this opportunity to have our meeting and if it weren’t IRSF giving us this opportunity it probably wouldn’t have happened. We are living a blessed life! It may not be the easiest life, but it sure is blessed. Thank you Jesus!