BOSTON!!!

Making your way in the world today takes everything you’ve got.
Taking a break from all your worries, sure would help a lot.

Wouldn’t you like to get away?

Sometimes you want to go

Where everybody knows your name,
and they’re always glad you came.
You wanna be where you can see,
our troubles are all the same
You wanna be where everybody knows
Your name.

You wanna go where people know,
people are all the same,
You wanna go where everybody knows
your name. 

Cheesy I know, but it just fits! Last summer a bunch of us ended up in Las Vegas on a whim.  Erica, my always wonderful travel buddy gave everyone in the group little photo books with these lyrics inside, it was the theme to out rettaway. Fast forward to Memorial Day weekend 2011, in Boston and the Cheers bar is right around the corner from where we were staying. Many of the crew from Vegas were there, those that weren’t were certainly missed! It worked out that a few new friends joined in too. I have to say that the absolute best part about the trip was my rett family. Being at a table, where it is just understood that everyone there has been pushed closer to the edge than they would ever have imagined. We didn’t need to talk about rett or our girls, but just that everyone had the same common thing in the background made it that much easier to laugh and cry together, which is pretty much what we did all weekend. As much as rett can often feel like a nightmare, being with these people really does feel like a dream. I didn’t bring my camera so no group picks, sorry. The pic up top is Dawn, who I wish I had seen more of but the little bit I got was great! Also along on the trip was Maren, who I have to give some sort of flexibility and funness award to. Because of her faith she doesn’t drink tea or alcohol, yet she went to high tea and sat in a few bars with us, I hope that someday I can be as easy going, spontaneous and fun as the lovely Maren. In addition to being out and having some good friend time, I also got to enjoy the Boston Common and Public Garden.
Having lived most of my life in Arizona where everything was relatively new, it was so much fun to learn about the rich history of this area. From the flags on display to the statue of George Washington and all of the unique trees, it was a wonderful place to stroll with a few different friends as well as a haven when I had hit my information limit on Sunday.

To top off my escape to the garden on Sunday, the church bells from the church in the above picture were amazing. After the chimes for noon they played the hallelujah chorus and it was stunningly beautiful. A true gift. The trip wasn’t just fun with friends and strolls in the garden. There was a wealth of information to take in and honestly I think I am still processing it all. Dick Hoyt of the world famous Team Hoyt spoke. To say that was emotional would be a great understatement, it was more than I can put into words, so I will just put up the video and tell you that as this video played on the screen in front of the whole group, Dick Hoyt stood on the stage and wept while watching it, there wasn’t a dry eye in the room.

From there on a lot of people talked about a lot of important things. I mean really smart people who are amazing and have given to our community in the most generous way with their dedication to either working to fix it or make it better today. One of the presenters was a sibling, who grew up alongside rett syndrome and now teaches and has a lab and is a part of the solution that is coming. There was also a lot of info on literacy and communication. I am very excited that I have already shared some of what I learned and Claire’s teacher is already making a plan to teach her to read next year! The biggest news of the weekend was IGF-1. The idea is that somehow having the MECP2 (which is where rett lives) broken in your brain reduces BDNF and IGF-1??? So if they raise the IGF-1 then the BDNF goes up and then the body works better. It is really pretty complicated and there were a lot of very smart people who did there best to explain it to the pea brains like myself. But regardless of how it works, most importantly, I think it DOES WORK!!! After two days of brain numbing information, there was a little two sentence blip by the primary researcher. It included words like ‘preliminary’ and ‘very positive’ and ‘moderate improvement’. All words that I don’t generally associate with rett syndrome, until now. I left humbled and encouraged. There are amazing people working so hard to get the girls a better life. Both in the labs, in the clinics and the schools. I am in the company of some of the greatest friends a girl could dream of. As hard as it might seem day to day, I keep hearing the words of Dick Hoyt in my head, “YES YOU CAN!”

2 thoughts on “BOSTON!!!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s