My Journey to New Orleans and Normal

Last Thursday I sat in an airport early in the morning smirking to myself. I breezed through security with just my little backpack while I watched many with children struggle to keep composure. It was very early. Many of the kids looked tired and I saw a few parents who appeared to be having slight challenges with communication. I smirked because in that moment, it wasn’t me. It normally is. I am nearly always exhausted and struggling to complete whatever task I have in front of me, whether it be getting groceries or taking the girls to the neurologist, I am most often on the very edge of sanity, so I really savored the calmness that was travel by myself. I was on a journey to New Orleans, for the 7th World Rett Syndrome Congress, to be by normal people. New Orleans was wonderful. The food was tasty, the people were so friendly and vivacious, there was a spirit of resiliance in the air. As always, I loved being with my rett family. I met a few new faces and saw some people that I have known for a while and have a special place in my heart. The days were full of presentations with slides filled with phrases like “neurotransmitter pathways” “management of symptoms” and “synapitic efficacy”. The nights were filled with great company, eating hot food and glorious, uninterrupted sleep. As the conference wound down a researcher, Dr. Huda Zoghbi spoke. She had slides like this and if I am honest I didn’t exactly understand every word but I got the general gist, they are figuring it out, they are getting closer.

It’s no longer a matter of if but when. Nobody talked about a complete cure, rather a substantial reduction in symptoms, I’ll take it! With that it was time to head home, still tired but a little renewed. I was reminded that I am not alone, that Rett Syndrome is not a death sentence, there is a lot of life to be lived within it and that soon it might get a little easier. There was a hurricane about to blow in so I was happy to get on a plane and get out of there. Again, I found myself sitting in an airport, this time a little less cynical. There was a family traveling with their two children, all wearing Make A Wish shirts, I certainly didn’t smirk at them as I recalled the turbulent time in our life that we went through an airport for Claire’s wish. I recognized lots of faces from the conference, without their badges and their children, they blended right into the hectic airport scene. Made me think, maybe everyone else has a crazy story just like mine, you just can’t tell when they aren’t wearing their badge. There is a saying among motorcyclists: There are two kinds of riders, those that have gone down and those who will. Doesn’t this apply to life as well? I need to remember this. When people say insensitive and hurtful things, it’s most often because they don’t have a clue, but eventually they will. Nobody gets through life unscathed. You just don’t know that until you are on the other side, but at least the other side for me brought with it some of the most amazing people and the ability to be in a room and know that everyone in the room in on the other side too.

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