1,680 miles later...

My summer has been such a whirlwind that I really don't know where to begin! I have spent the entire summer crisscrossing the United States for various reasons dragging my precious babies with me!! Thank God they are good travelers, well, mostly.

First we were in NY, as I mentioned before. Some parts were hard but the trip was mostly great.

One thing that sucked was people telling me that "she'll grow out of it and be just fine". Ummm, no. You can't grow outta Rett.

 People also talked about all the things that she'll do when she is older, things that typical children do and that is hard for me to deal with. I know that they just are being hopeful and optimistic... I think, who knows maybe it makes them feel better. However, as much as I want to believe that there will be a treatment soon and that she will be able to do more things and have more opportunities it is a quite hope that I keep close to my heart and don't let it run around unchecked.

I HAVE to keep it in check so that I can live in the reality of today and the daily grind of doctors and therapists and sensory diets and cutting up food into bite sized pieces and worrying bout her weight and worrying that I not paying enough attention to her brother and finding ways to pay for therapy. 

I have to find a routine, some kind of normalcy and comfort in my life that isn't tied to how I thought it would all work out. I would hate my life if I lived all the time talking and thinking about how I hope things will be different later. I can't even imagine how Emma would feel if I spent all my time around her talking about how I hope she will be different later!

Nope, I choose to except our life together as it is and to just enjoy her just the way she is beautiful, sweet and full of life.

I do desperately hope someday that someday soon there is a treatment while she is still young so she can some semblance of the childhood I hoped for her, and that someday there is a cure. This hope drives my participation in fundraisers like the stroll-a-thon and my own fundraiser that I am working on to help fund research. It is even tempting me to join one of those marathon training things so I can get in shape and possibly join the Rett Racers and believe me, THAT is some powerful hope right there! The only other thing that would get me to run a half or full marathon would be if I were being chased by a hungry Bengal tiger and even then I might say screw it and quit!! I digress... so I do have hope, and I am optimistic but I have to live in the now, otherwise I think that I would spend each day heartbroken and miss the joy of seeing her smile and hearing her laugh and watching her with her brother, whom she clearly adores ❤

The journey home.

Today was day one in my voyage home, 840 miles with 2 year old twins all by myself.  I MUST be insane.

Emma barfed all over herself 3x before we made it an hour, needless to say I ran out of emergency outfits. Okay, no problem, I'll clean you up when we get to the lunch stop, AKA the busiest McDonalds on the planet. There were 3 bus loads of boys scouts at the place in addition to what appears to be half of the soldiers from the nearby army base. There was literally a line almost out the door of the McDonalds! Crazy. 

I have to say, that being on a restaurant filled to the brim with Boy Scouts and soldiers I had no problems getting my unwieldy double stroller around the place, what a helpful bunch! 

After cleaning Emma up and spending a lifetime in line we got our food and all was well, babies were eating, no one was covered in barf, no crying, no whining  ... Parental bliss... 

Then I hear "mommy look at me, hahaha" and I look over and see my son dump chocolate milk on his face, probably half the container! Covering himself and thinking he's the funniest person on earth.... devil.  Back to the bathroom for another hose down and wardrobe change!

The rest of the ride when well, Emma got a little cranky. Every time she started crying I gave her a fruit snack,

It was like a anti-crying magic candy..... or it gave her a sugar high.... either way she stopped crying and was in a great mood for the rest of the trip and tonight in the hotel. 

All in all I'd say it when pretty good, most people were concerned about me traveling alone and it being harder because of Emma's disability but I have to say that I think she did great, she's a wonderful little traveler. I'd say my twins were no different in terms of their traveling tolerance. 

 Tomorrow we start leg two of our journey.... 

Emma & Manny miss their grandpa already!!  Love ya dad!

You're lucky that I fear prison...

I have been on a wonderful 22 day long hiatus visiting my family in NY.  My great grandfather passed many years ago and I have not been to his home since his passing and hearing that it might be sold soon by my great aunt I wanted to visit a beloved place from my youth before it is gone.

There is a reason that no NO ONE really goes there anymore ..... my super psycho great aunt!

I knew she was crazy before we went there, she has always been a complete wack job.  Wack job might be putting it mildly....... Ummmm, can't think of a more suitable adjictive. Raging lunatic?... Nope, not strong enough, anyway ... she has never met my daughter before and she has no idea what Rett Syndrome is, an ignorance I can readily forgive as I did not know what it was six months ago either.

However, this nut all of a sudden started telling me what a burden she was going to be to me and how she is a life time, 24/7 job and that I better get an abortion if I get my self pregnant again because its gonna cost money ... Blah, blah, blah, blah.  Over and over and over again she went on and on for what felt like forever! It was crazy, SHE is crazy.  If she wasn't related and older than dirt I might have gone crazy myself and given a slap upside the head.  I doubt it would have done a bit of good since she is super crazy. What can ya do...

Life goes on....

Emma and the new friend she acquired this trip!