I am so excited! I booked a trip to Colorado Springs for Memorial Weekend! All by myself! Why, you ask? Because that is where the Rett Syndrome Family Conference is!
Bringing my family is not an option, so Andrew is staying home with the kiddos. The coolest thing about it all is that I was planning on going even if there wasn’t any CDKL5 specific information; there are so many seminars on things we are dealing with right now, scoliosis, bowel/GI issues, etc. But then the same day I booked the trip I got an email that IRSF invited IFCR (us, CDKL5) to be a part, we will have our own meeting and all the speakers, specialists, scientists etc will know we will be there so hopefully there will be some specific information on CDKL5!
I am so excited! There are so many aspects to my excitement. All the information I will get about Lily! Getting to meet some of my fellow CDKL5 mamas that I have only spoken online to! And maybe I am a tiny bit excited to stay in a hotel room by myself for three nights! I can’t even imagine what that will be like, but really look forward to finding out.
Only about 6 weeks, but who’s counting?
Calm Amongst the Chaos 