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Wednesday, October 29, 2014

#notspeaking

there are only a couple days left in rett syndrome awareness month-and it is game 7 of the world series-and since I can only pace so much, i came here to keep myself busy.

this past weekend i went on my now annual trip to healdsburg for the healdsburg half marathon. this was my third time.  i only signed up for it in 2012 b/c it was the perfect halfway point between me and Boston and I still didnt know if I would get spot on team rett so i thought might as well do a half while i wait. i recruited some friends, we rented a house and we became team boston or bust. it was a good idea.  i trained well for it. i finished in 2:34:59 and was damn proud. the giants also happened to be playing in the WS that year as well and i have fantastic memories from that weekend. it was my first half, i was so nervous.  i didnt want to make it about fundraising but wanted a slight rett connection so a couple of us had shirts that had a little something about rett on the back.

we went back in 2013 this time as the rett warriors.  we had grand plans to dress like warriors (there is a costume contest) but they fell through.  so did my plans of beating my time the year before.  2:36:07 this time. by then I had been to boston, almost finished but didnt because of the situation, and wasnt as worried about time. we did get shirts made that said I run because she cant on the front and more about rett syndrome.org on the back.  but again, we had a great group of ladies, a great house and a fantastic time.  two years in a row laying out in the yard post race in the sun with bubbly and hot tub.  amazing.

this year we went again as the rett warriors. no shirts, no socks, no nothing.  but we did have the #notspeaking kits though. and on friday night, over wine, i explained the plan. i read this to them 
and they understood like they never could have before.  friends that have known avery since birth had lightbulbs go off. new friends were touched. and on race day we wore our stickers and when no one asked we still gave out cards.  we ran silently and there were tears shed. it brought us all closer to what it is like -even in only one aspect--to have rett. #wwyg?

Friday, October 17, 2014

be afraid...

the kids were off from school today and the day crept up on me which means no child care.  im literally counting down the moments till i get to leave and go to the office for a couple hours. nolan has a birthday party this afternoon and i realized that today was the only day to get a present for said birthday party. that means taking both kids to Target.

yikes.

so we packed up and went before lunch hoping it wouldnt be too packed and that we would get in and out quick.  once we go there I put avery into the cart, not the seat area the big area.  she is almost too big for that spot but today it worked.  we made our way to the toy section and after a million "mom, come here's" we end in the Lego aisle (just where I had wanted to start but Nolan had other ideas).  As we are moving our way down the aisle a woman looks at me and smiles and says Hi Im so and so and is this Avery? she explains that one of her daughters is in the class Avery is mainstreaming in this year and that she got the letter I sent in to go home with parents and its in her car right now and she read my blog and cried and cried.  she then went on to say that her daughters also have ieps and she knows the struggle and would i want to get together for coffee? umm, id love that I say.  i tell her to shoot me an email.  she says she was just on the phone and she saw Avery and had to stop to say hi.

i swear everytime i think "i hate people" something like this happens.  she changed my whole outlook and we actually had a decent and dare i say fun time at Target.

as we are headed back to the car, i see a woman stopped behind my car and then taking out her camera and taking a picture. and for a second i thought crap did I forget the placard? and then i realize she is taking a picture of the "october is rett syndrome awareness month" that is written on my back window.  we pass as she realizes this is my car.  she says is this your car?  i say yes it is!  she says my niece has rett syndrome-i am going to send this picture to my sister! she tells me who she is and I say i think we have spoken. i introduce her to the kids and she reaches over and sweetly touches avery on her shoulder, really looks and says hi to her.

i could have peed my pants.  it was a trip to target that was meant to be. and I almost didnt go because i was afraid.  but i recall a quote a wise friend recently shared: "be afraid, but do it anyway. live anyway!"