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
You wanna go where people know,
people are all the same,
You wanna go where everybody knows
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!”