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.

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!"

Tuesday, September 30, 2014

what would you give?

i spent a good part of my childhood in california.  was here from about a year old to just before I turned 8.  then we moved to va beach. i have been back here in california for just about 14 years and every now and then I smell something that brings me right back to being 5 or 6 or 7 years old. there are plants here that arent in va.  and every now and then i smell a fennel plant and im at mare island elementary playing house and making salad with weeds. that happened today.

and then a fleeting thought goes to my daughter.  my avery-because she isnt doing what i did when i was her age. not even close. and even if she were, she cant tell me. she cannot speak.  imagine that. really think about it....

crazy right? it is hard to think of even going an hour without speaking. so that is what I would give.  im giving up speaking for at least one hour-while running a half marathon.  my whole team is joining me and we hope to raise a ton of awareness and some cash to cure this thing.

so how does this not speaking thing work? we will wear a sticker that says ¨im not speaking for rett syndrome, ask me why!¨ and when they all ask, Ill hand them a card to direct them to www.rettland.org/notspeaking and hopefully they will be moved to give and share! #wwyg #notspeaking

rettland raises money to give to families that are participating in clinical trials.  there are clinical trials! that in and of itself is unreal.  the fact that rettland exists to help get the families that want to participate but might not otherwise be able to, is out of this world.  it just blows my mind.

wanna have your mind blown?  take part!  go to rettland.org/notspeaking and donate, or order your kit to help the #notspeaking campaign.  because -- what would YOU give?




Tuesday, September 2, 2014

people are awesome.

ive been known to utter the phrase ¨i hate people¨.  and maybe in traffic i still do.  or while shopping in costco.  but man people will surprise you and make you cry and lift you up when you least expect it.

in about six weeks im running the healdsburg half marathon for the third time with great friends.  we have made it into a girls weekend. we rent a home up there and hot tub and drink champagne and talk and laugh and cry. this year it was my turn to organize the troops and find the house and send the checks.  well i sent the final check a week or so ago and on saturday got a call from the owner.  turns out i screwed up the part where you actually write out the words that describe the numbers in the little box.  oops.  so she let me know that she would shred the check and I could just mail another, no biggie.  I let her know I was in SD for the holiday weekend but would get the new check out on tuesday first thing.

that night-after a lovely day on coronado island-i checked my email and there was this:

Hi Erica -
  I wanted to let you know that I would like to reduce your rental fee by $500.00,  of which I would ask that you please use towards your  fundraising goals for Rett Syndrome. I stumbled upon an  article and your family blog today, while trying to find  your phone number this afternoon. I am so touched by your  story, and the terrible disease your beautiful daughter is  fighting. My children are my world; and as a mother I am so  inspired by your strength and dedication to finding a cure.
Thank you for all that you are doing to raise awareness of  Rett Syndrome, and for turning something so painful for your  family into something positive in this world. My heart is  with you. Thank you. And much admiration and congratulations  for running the Boston Marathon, twice - I don't know  you, but you are certainly my new  hero. Sending love and  many thanks....


i mean, right?  I read it out loud to my roomies and we were all a ball of tears.  so.  even though traffic and costco trips are still somewhat unavoidable, people are awesome. 

Tuesday, August 19, 2014

conflicted

im conflicted. over ice.
of all things.

the ice bucket challenge, that has raised millions of dollars and tons of awareness for ALS, is all over the place.

every time I turn around i see a friend or a celebrity dumping ice water on their heads and doing it in the name of ALS.

almost as soon as it got big, the articles criticizing it were popping up too. saying it was narcissistic, wasting water, that no one was really donating anyway and no one says what ALS is in the videos...on and on and on.

and it pissed me off.

before rett syndrome became my cause, my cause was ALS.  ALS killed my mom.  my 63 year old vibrant, stylish and very full of life mom.  killed her in the most terrifying way. she had symptoms way before her diagnosis, that were minor. as soon as she was diagnosed it went quickly.  she lost the ability to speak, then to eat and in the end lost the ability to breathe. she was afraid. and 3000 miles away. my daughter was 7 months old.

less than three years later I had a new cause-rett syndrome. the ALS walk I had been participating in took the back burner and the Strollathon went to the front. my mom was gone, she wasnt coming back and I was desperate to try to save my daughter from the unknown. i dove in to rett syndrome head first and never really looked back.  and now as Im typing this im realizing this ice bucket challenge has brought up a little guilt for that. for giving up on ALS, and on my mom.

im also guilty of something else. something else that is bothering me about the attention ALS is getting-- of being jealous of other causes and the attention they get.  i know i have written about the feeling i get each october and i see pink everywhere-at my gym, on NFL uniforms and MLB bats. and I would think to myself-man, what if that was purple for rett syndrome?  WHY doesnt rett get the attention it deserves!?

im looking at this with new eyes now.

this is the trend in the rett community--¨how can we get on this ice bucket thing?¨ ¨why didnt we think of this?¨  ¨I wont do it because I only want to give my money to rett syndrome!¨

and my unsolicited advice is this: give to whatever charity you want-do it by dumping ice over your head, running a marathon or just by clicking a button online. or have a fundraiser, invite your community and your friends and feel good about what you are doing, though it may feel small. things like this start small.  start something.

and please be happy for the attention ALS is getting-because this money and awareness will make a big difference to someone elses mom one day. a day like this will come for rett too. people in the rett community ARE working hard-at this very moment- research in dark quiet labs, starting community clinics and traveling to trials and chairing strollathons.

we are all in this together.  all causes are important because we are all human.  so please dont get mad at me when i dump ice over my head sometime in the next few days. its for my mom. :)

Thursday, July 17, 2014

fundRAZOR

this

why?
because I dont want to sit around waiting...  i want to be IN this.  ALL in.
and because,
WHY NOT?