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Tuesday, November 18, 2014

blog fog

so much to share. but i have been in a fog of sorts.  from halloween to clinical trials and having to hire a new sitter/behavioral therapist my mind has been in a fog of sorts.

im hopeful that Im coming out of that fog just in time for the holidays.

halloween was killer.  way killer.  rad.  we trick or treated with some new-ish friends -parents of Nolans school buds just one hood over. we had a blast.  the kids did too.  its all about the kids right?  i cant tell you how many moms I talked to after halloween who remarked that it was their all time favorite holiday and I wholeheartedly agree! it took us some time to get there-but once we got bold a few years ago and took Avery with us and it worked, everything changed. We had such a great night and are so thankful for new friends and our awesome sitter Stephanie (who came trick or treating with us and who when I asked her if she might want to come her response was omg, id love to!)

we went to countless houses.  people just "got" Avery when we had to encourage her to grab some candy and when she missed people said "oh good try -try again!" and there was excitement and care in their voices.  Nolan was running ahead as usual and we tried our best to keep up with the group.  At one point i hear a small voice in the dark "I just saw Avery!" and another: "you did?  I didnt know she was trick or treating?!"  and a third: "of COURSE she is!!!!" i stopped in my tracks. I said are you guys talking about Avery Robertson!?  and they said yeah! It was just some typical third graders that knew her from her tiny bit of mainstreaming.  No big deal (HUGE deal). their mom comes over and say hi i emailed you last year remember?  yes, I do.  good people.

After trick or treating we went back to our friends place and then over to a newish neighbor's party.  Turned out their daughter also knew avery and the smile on her face when I asked her about my girl was nothing short of extraordinary.  her mom and I talked and she knew a lot about Avery too and we cried and we hugged.  amazing.  killer.  rad.

on november 5th i was invited to witness my friends colleen and jared renew their vows just on the even of their 15th wedding anniversary.  they have been through hell and back with rett and other life challenges and in their words it was a miracle they made it this far. about 8 of us stood on a cliff and saw true strength and true love make new promises to each other.  it was an honor to have been there. we ended the morning with fish tacos and good conversation. not a bad way to spend a wednesday.

just 6 days later big news hit the rett world. i sat at work in front of my computer waiting and watching for the news we heard would come.  trial news.  would it be good or bad?  we thought good for sure-but didnt know.  and then there it was. this LINK explains it.  basically it means that on Monday there was not a proven treatment for Rett and on Tuesday there was. I was flooded with emotions that are all coming back again as I type this.  All the Strollathons and marathons and lemonade stands and studies and clinics-all we have had a hand in-made this happen.  the families and girls that took part in this trial are my heroes. rettsyndrome.org and the scientists and the researchers and physicians and Neuren are all heroes to me.

No this drug is not yet approved by the FDA, no it has not been tested in the pediatric world yet but omg the hope that this trial provides. as i was reading the news, it dawned on me that we once again missed Avery's diagnosis day.  it had been two days earlier, the 9th.  i couldnt believe it. 5 years almost to the day of diagnosis and im reading there is a possible treatment?  mind blowing.  and all i could think about was that moment i shared with Larry Glass, CEO at Neuren when he said to me "not IF, WHEN."  and when is now.  it is NOW and the NEAR future.

I went straight to the bar after work alone, after trying to get anyone to meet up and failing.  I had a couple cocktails and then went home to pop the champagne.  Red was home by then and it was Stephanie's last day.  So we all had a glass.  I told Avery the news and she literally went weak in the knees. and then went down to the ground.  she gets it.  yes she does.

I ended the week with a double date with the awesome clinic Nurse Practitioner Shawna and her hubby on Thursday night and with a crazy chaotic clinic on Friday.  Got to end the day at a dinner in Walnut Creek with THREE neurologists, an RN and the Dr Mary Jones.  Not too shabby.

Oh and the sitter thing.  It is really hard to get a good one.  Especially after years of a great one.  And after a couple non starts and one failed hire, our new girl starts tomorrow.  cross your fingers.
but i feel the fog receding.

1 comment:

Colleen said...

Holy crap. I love you. I got chills thinking how within 5 years, nearly to the day, rettland changed. I freaking love how great things are going and that it is almost more than you can handle. Yeah for fall being foggy and awesome!