Calm Amongst the Chaos

I always want to sing like Annie “In NYC…. ” I hope you all do the same after reading the title. Oh I love Annie!
So I have been back from NYC for a week now and wow I am back to a very busy life. I can’t believe I was able to skip out of it for a few days, it seemed impossible up til leaving and when I came back I was wondering how they all survived with out me. But dad did wonderful, the house not so great, but the kids and dogs stayed alive and happy even (well except for the sea monkey’s, those poor guys did not survive my dismissal). And I got a break that I didn’t even knew I needed as much as I truly did need. Did that even make sense?
I am not even sure I am able to sum up that weekend in any decent way, but I will try with some highlights.
The first day it was wonderful to just share with my mom. NYC has sorta become a place for us. Our adventure with that big ol city started 20 years ago this June! And we always seem to make it back every few years or so. We had the perfect plane ride and then met with some ladies at the airport… then we took a shuttle then we checked into our hotel, then we went to dinner. That pretty much sums up the trip go go go! Mom and I “slept in” that first full day and it was the last time while there. AZ time was 2 hours behind so even a 8am wake up was only 6am for us. But sleep was pretty much the last thing we had the time for there.
Friday was a free”ish” day so a group of us walked through central park and had a really nice time. We would talk and share stories and just relate with others on a level not many can. We shared tips and I even took a phone call to refill one of Lily’s mail order medications while sitting on a park bench with others moms who totally understood that phone call. We took pictures, we laughed and we shopped.

Some Yummy Mummy’s in Central Park

Friday night was our LBD (little black dress) night where we started at the Marriot where we sat and had a drink and over looked the city and then we all loaded up in a bus and had an expensive but absolutely amazingly yummy dinner, I would have been fine with just my appetizer and dessert but that is how I am carbs, carb, carbs :). It was an emotional dinner as we all shared who we were, who our awesome kids were and there were tears and laughs.

My mom and I

Saturday we had to be outside the Today Show VERY Early (after a night of no sleep due to a cup of coffee with my dessert!) and it was very cold for this AZ mama! Very cold! But the long story short is we not only got our mugs on the today show with CDKL5 bright green on, our president of IFCR, Katheryn, was able to say a little burp about us and our websites (CDKL5.com and CDKL5uk.org) got a ton of hits from our stint on the show so that made it worth it for freezing and not sleeping 🙂 Now on to trying to get them to feature us on a story, INSIDE the studio!

Yummy Mummy’s at the Today Show

I hardly remember anything else from that day, a quick tour of the 911 memorial, it was beautiful. I hadn’t been down there since 2008 with Andrew and it was incredible all they have done in 5 years! Emotional and beautiful. A quick beer followed at a pub and a cab ride back to the hotel where this lady fell fast asleep for over 2 hours! Then on to dinner (yummy Thai!) and then my mom and I saw Tom Hanks in Lucky Guy! It was awesome and we had great seats! This is a great memory!! We were in the same room as Tom Hanks! The play was funny, sad, entertaining! And I will say it again, we were in the same room as Tom Hanks!!!! (and let me just say when talking about an awesome show in NYC there can never be enough exclamation points to all you naysayers)

Sunday was breakfast at Ellen’s Stardust Diner which was so much fun!!! The waiters and waitresses just sing and bring us food. If I could ever say something would be my dream job, that would be it! Not that I sing well, but who cares it was like living in a musical. Total blast! Then we had to say goodbye to many of the moms which was really sad.

Sunday night the ones of us who were left got in a bus and headed to Yonkers, NY where our friend Paula, all the way from Ireland, had a friend who owns an Irish Pub. We probably had the best night that night. It was so casual, so fun and of course karaoke! I may have sang a little Ice Ice Baby, which I did not choose to sing the mic just ended up in my hands. But let me just say that song is far easier to sing along to in the car without a bar full of people just staring at you. But it was fun! And the base was pumping… It really was a night to remember, we followed it up with a pizza slice around 1am and had our last moments together.

Then a little breakfast and a teary goodbye we headed home on Monday. We got to the airport really early and I noticed while checking in my bag that I left my carry on in the drivers car! I was sick to my stomach, mostly a bag of mementos for my family, every time I spoke to Oliver on the phone he would ask what I was bringing him. I had a gift for Andi Jane’s 8th birthday in that bag. I was sick with worry. It took me several calls but I finally found someone interested in helping me track down Carlos (always read your drivers name, ALWAYS). Carlos called me back and said he’d run the bag back to me! I was forever indebted! I paid him a gracious tip and was able to leave NYC knowing there are good people out there. I very well know that bag was as good as gone in most situations, but Carlos was a good guy and he is my new BFF. I thanked Jesus that he had this all covered! And I came home to my family who gave me a million hugs and when they all asked what I brought them I was relieved to show them the stuff I ended up paying way more than any of them were worth.

I can tell you all about what we did and where we went, but I can’t share with everyone how it felt to be with these women. Each one of us had to move mountains to even get away. Some single moms who had to have their kids care all planned out, some of us have helping husbands but we still had to make sure each appointment was made (or cancelled) food for them to eat, plans made, medication all planned out, etc. We all fight daily for our kids and we all adore everything these special kids do. No one else quite gets it when I say Lily went a whole day without a seizure. These ladies do. There was this unspoken connection that united us. A group of moms who understand each other on levels many won’t. Moms who will get up at the butt crack of dawn in the freezing cold to hold up signs just for one chance to get the name out there of the monster who has taken so much from us. CDKL5. These ladies warmed my heart and now I can put a face (and accent) to a name now and things will never be the same. I hope we all get to see each other again, in another part of the world, preferably a warmer part of the world and definitely would love our kids to all meet!
Hope-Love-Cure CDKL5! Together we ARE stronger!

The ones who were left on Monday Am