Calm Amongst the Chaos

Awhile back our board (IFCR) received a request/invitation for one of us to attend a conference a family was holding in Albuquerque, NM. Considering our board consists of folks much further east of New Mexico than I am west of it I said I’d go. Not having a clue as to what I was going to do or say, I just thought 16 hours in the car alone sounded a lot better than listening to another fight to be had by Andi Jane and Oliver. So I made a power point, first one ever and stole borrowed Andrew’s laptop and I got in the car and left.
Ha. Well actually I made sure Lily had all her meds refilled, wrote out each time of the day she gets said meds, left notes about foods for the kids and the dogs, made sure the kids were all accounted for and respite was in place when needed and then made sure everything at work was handled …and then I left.
The ride was long. I had previously asked my facebook network for some good book suggestions to listen to on the ride up and I got a lot. A lot. A lot. Many I had already devoured, and many I had to add to my list for later, but it was the book I was advised to NOT get to listen to in the car because the tears it will cause may hinder my driving, yes that was the one that won the game for me. I may be sadistic, but if you promise me an ugly cry I am there. Except for dog book/movies. That is a different ugly cry that I am not ok with. Have you ever seen Hachi: A Dog’s Tale? I was in the fetal position for about 3 days. I don’t recommend it. But yes, I like to get my emotions out on fictional characters that aren’t real. It’s just how I roll. So I got Me before You. And this isn’t a book review post, not sure how I got so lost here. Anyway I didn’t even hit sad to back at home and back to work and back to no more 4 hour stretches of aloneness. But it is good. Super good. Can’t finish at work. I’m a sobbing mess. And that means good book. 
Wow… ok back to the road. I made it to Albuquerque in 7 hours with only one stop. Who’s the woman? Me! And I got put up in a hotel and I sat in the hotel lobby/bar/grill/ had a beer and a steak wrap, then took a bath and fell asleep by 8 pm. That is how I roll while alone with have no rules. I’m Willlld! (Dirty dancing friends feel me?)
I was up early and left super early to make sure I knew where I was going and was so early I got to cruise Albuquerque. Pretty sweet. Saw some hot air balloons, saw some.. houses. Yup, it was sight seeing heaven. 
Get to conference and made sure I was set up with the audio system. So new to me this whole thing was. 
I met the family putting the event on and they were so sweet. So inspiring! I was so impressed to see a family and community all rally together for Juanjose who has CDKL5 just like Lily. They have “angels” who volunteer at their events and this was an informative conference about CDKL5 and a thank you to those who help them out. I was honored to be a part.
I got to share our story and our video CDKL5 and US which I know is getting pretty old, but we are at over 18,000 hits! It is a great tool to show Lily’s story in a way much cuter than I can tell it, and I shared about how the IFCR was born and being a part of the board and it was over before I knew it. I stayed and listened to others and really enjoyed meeting everyone and taking part and helping where I could. It really was a great event. I was honored to be a part. I also got the pleasure to meet Juanjose and Max, two CDKL5 boys that melted my heart. 
I was back on the road at 11 am and was in Greer by 3 pm and straight to the cash register I went to help my mom. Nothing like working the store. THE store, the only store in a tiny town. It really is something so foreign to me who grew up in a pretty large city. So fun, so much chit chat, so much gossip, so much fun. Plus I got to spend 3 hours with my mom. Just her and I (and the random customers that came roaming in and out) and that doesn’t happen much these days. I relished it. When we closed we went out to dinner with my parents friends and we laughed all night. It was great. Then we had breakfast before I headed out back on the road and home to my fighting children. 
I know that was a serious play by play that may come across unnecessary, but that’s ok. This is my blog, my memories, I will come back to and read over and this weekend was really special and I wanted to take note of it. I also wanted a good picture of my parents and me but that didn’t happen. But as I have been told, the world is not my wishing well.