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Wednesday, November 9, 2011

two years.

Just about this very moment two years ago, I was outside with the kids when my phone rang.  I didnt recognize the number at first, but then did once I missed the call.  The neurologist.  My stomach did a couple flips. I called back and just like that-everything was different-but also everything was just the same. 

It is strange that prior to that call-the one that made me cry so hard I could barely ask all the questions I had-it was just a regular evening and then after the call, we had Rett syndrome.

In a matter of minutes.

And now two years have passed just like that.  And it also feels like it has been closer to 5 years because our lives have become so full.  True, I hate everything that Rett has taken from us and all the other families dealing with it-the dreams that have been shattered, the daily heartaches, the struggles- all of it.  But I have to say it has given us much more than it has taken away. 

No, I have not come to a place of full acceptance yet, I don't know that I ever will.  And I still get mad-really mad- about it all.  And I would trade it all if it meant Avery could have a "normal" life-whatever that is exactly.  But....AMAZING things have happened as a direct result of Avery having Rett syndrome.  Donations from all over are the most obvious of the amazing things.  But there are many many other things that happen-wonderful people who would have never crossed our paths are now as close as family members.  Family members are even closer than they were before.  Old friends have stuck by us and have gone above and beyond.  The list just goes on and on.

yesterday this was my facebook status (it got 45 "likes" and 20 comments) :

two years ago tonight, I had no idea how ours lives would change the next day. tomorrow is diagnosis day and we will celebrate-celebrate the triumphs, the friends, the lessons, the awareness, the funds raised, the research and all the goodness that has come out of this ugly thing called rett syndrome. we will celebrate. ♥

So take that Rett syndrome! 







1 comment:

roni said...

How beautiful your family is!
And, oh, the lessons we learn from heartache...I guess something good has to come from something so difficult. Love to both you and Red...