Thoughts on today

I have quite a few things I want to say about the event today.
First and most importantly I met some AMAZING moms (and girls) today. I am still new to our "life with Rett." There were moms there that have been living this life for 23 even 33 years! Today was harder on me than I thought it would be.

{I want to insert quickly that I truly HOPE I do not hurt any one's feelings}

Today was the first time that I was around "older" girls and I can't lie, it was tough. To be honest I find it hard to look past this week into Brooklyn's future; to think about her at 16, 25, 33 is almost too much to comprehend. Again, I am new at all of this so please give me time. I do not think I have fully accepted the whole "Rett thing" entirely. I mean yes, we have the diagnosis and most days I am ok with that.

Today was not one of those days.

I was in a room with 9 fabulous young ladies today that DO NOT deserve the struggles they live with daily because of Rett. I saw a 23 year old gal sit on her father's lap for comfort after she was taken out of her wheelchair to stretch her legs, moms of 20 year olds taking their daughters in to the bathroom to change their diapers, a brother holding up a sandwich so her big sister could eat, a room full of wheelchairs. It was all so overwhelming for me.
On the flip side.....
I was in a room of "experts." Moms that have walked a mile (or thousands) in my shoes. It was a place where EVERY mother in the room could relate to me.......a mom of a rett girl. I was not with a room full of moms talking about their kids growing vocabulary, their dance classes, and sleep-overs. I was with moms talking about gait trainers, seizure meds, wheelchairs, and augmentative communication devices. They were talking MY new language. A language I never planned on learning.
Overall, I am glad I went. Yes, it was hard; but meeting the other moms was wonderful. They are inspiring. They make me feel like I can almost do this "Rett thing."

Other highlights:
*We got to see Taylor (and the entire Raab family) again!
*Charlie told me that while I was gone Brooklyn asked for "mama!"
*AND yesterday Brooklyn was sitting up after her nap, it has been months since she rolled over and sat herself up....yea!