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Thursday, June 3, 2010

conference reflections, continued

It's easy to feel isolated and alone when you have a child who is "different", none of your friends can really understand what you go through and there are moments-the dark moments-when you feel as though you are the only person on the planet going through this hard time.
then you walk into a room filled with 99% parents of children with rett syndrome and you can say "ahhhhh. Im not alone. look at all these moms and dads and grandparents who are walking the same path" Its an awesome feeling. I cant say that I felt this right off the bat when walking into the ballroom for the 1st session. We were late and I hate being late. So I had that on my mind, but guess what, other people were late too! We found C and J who held our seats and got down to business taking notes-not sure if what we were writing was the important stuff or not! I didnt feel the feeling until we were seated at the tribute reception later that night. Sitting with new friends and surrounded by our rett family that I felt a calmness and peace wash over me. I really did. My new friend M, who we had been hanging with the day before leaned over and said something about it being crappy circumstances but that she was really glad they met us. And I really was too. Another mom had said earlier that you can go to a conference where everyone is there for the same topic but its not like this-there is an instant emotional connection. All of our stories are so similar. And we dont have that awkward moment where someone says "oh you have a 4 yr old too? Is she into Dora and princesses and just talking up a storm??" and you have to say "my daughter has a disability" and the other mom gets all awkward and weird and then the connection is lost. This time it was more like "whats your daughter's mutation/deletion?" -"Really? Thats so similar to Averys! wow, let me get your email!"
So that was the biggest thing I took from the conference-it's going to be OK. It really is. We have the BEST people walking with us on this path and great friends and family as well. And we have been inspired and giving an extra dose of hope. im really starting to live like Avery will be cured. I want her to be a freshman in college and tell her new friends "I had Rett syndrome when I was a kid, but they fixed it". How cool would that be? I think it WILL be her future. I have to right?

7 comments:

mj said...

i was thinking about that just the other day. dr. jones and judy came to do a presentation at leah's school and they talked about how girls with rett used to just kind of be ignored because people thought they were mentally retarded. now, with therapies, they are really thriving and improving. then i thought about a cure...and how much i really want to work with her now so when she IS cured, she'll already know so much! ryan and i tell leah every day that we have lots of questions to ask her when she can talk. :)

Erica said...

thats awesome they did that. they are true angels on earth.

Colleen said...

Of all the things to take away from the conference, I would think that is the thing to get! It is going to be ok, somehow ;-)

Ann Marie said...

I agree. It seemed too good to be true before, but now it seems like matter of time. Its easier to get through the bad days knowing that it won't always be that way. So exciting!

The MacDonald Family said...

I remember when Annie got diagnosed 4 years ago and the feeling of "this is the absolute worst diagnosis ever". But then came the reversal experiment and all the hope about research and the fact that there WILL be a treatment within 5 years and now my attitude is I'm almost glad we have Rett because it's going to be the first CURED brain disorder. My daughter is going to be CURED!! Can't wait to hear what all of our angels have to say!

Kim said...

Hey Erica!
I wish we would have connected there! Wasn't it so wonderful to know just that we aren't alone?!
We do seem to have similar thought processing for this past weekend :)

Erica said...

love all you ladies!!
xxoo