Sunday, April 6, 2014

15 days

15 days until boston.
10 till i get on the plane to get there.
it has been a rough go this time around.  i didnt do everything i was supposed to do.  i dont think i went farther than 14 miles all at once. supposed to have done a 16, 18 and 20 miler.  whoops.  im really mad at myself for flaking out on training like i should have. but, at the same time im feeling ok about it.  i mean, i did it all last year and since I didnt get to finish in 2013 then the training just carries over right?  not really.

i ran 10 miles today like i was supposed to.  a hilly run that was new to me. red did ten yesterday and he told me where to go.  i had used that route before but never gone so far on it.  i didnt even realize it went that far! it was gorgeous.  perfect weather, not too many cyclists-or really that many people at all.  which i like because i tend to say good morning to everyone (except the cyclists) and when they just look at me like huh? i get all irritated. so im even more looking forward to the hundreds of thousands of bostonians who will be there to cheer me on in 15 days.

but the hills.  man they were tough.  really good for me, but so hard. but goose deserves it.  all the girls do.

our team has surpassed last years fundraising total and we are currently at $132, 288! Red and I have over 11,500! that is one thing that has stayed true from last year-the overwhelming support and love we have felt from friends, family and beyond.  im so excited to finish this thing.  two years in the making...and I will finish it! in just 15 days.

Saturday, March 29, 2014

kinda like a second pregnancy

you know when you get pregnant for the first time and you are all excited and writing everything down and checking websites to see how big your baby is day by day? and you cant wait for people to ask you how far along you are and how you are feeling and are you finding out if its a boy or a girl?

and then you get pregnant the second time and you do none of that? and want none of those questions? and you just want the baby OUT!?

its the same thing when you decide to train for a marathon, and then train for that same marathon the next year.

last year I carried the book that contained my training program everywhere i went.  making sure i was checking off all my workouts and runs exactly as planned.  this year that book lies untouched on my dresser. I did make a calendar with my workouts on it but im definitely not following it with the same kind of fervor as last year.

last year i wanted to talk about it all the time.  to tell people about my runs, my sprints, (okay, maybe i never really did sprints) my mileage. i wanted to tell people how sore i was and talk about shot blocks and hydration.

last year I was so into the process and PETRIFIED for the race.  out of my mind nervous.  exactly how i was when i was pregnant with Avery. consumed with the process and terrified of actually giving birth.

i run into people now and they all want to know "how is training?" and I have to fight the urge to groan.  but the truth is I just want this part to be over.  i want it to be race day, go time.  im OVER carrying this baby!!  so over it!
i mean, I am supposed to run TWENTY miles. TWENTY.  i did this last time!!!!  i dont wanna!!!!!

i just want this baby OUT!!!!!!

in less whine worthy news-team rett 2014 has raised $121,726 SO FAR.  Just about to surpass last year. and Im so proud of all of us-whether its our second, third or first!   counting down the moments until i get to walk up to that start line and get going.

Tuesday, March 18, 2014

made it

i made it through the weekend of the NHS study.  barely.  but that is a story for another time. let's just say it was just like every other NHS with a little extra added flair.

it was a special weekend though.  the last time we would all be together like that. we started bringing avery in March 2010.  i started coordinating it in 2012.  now its 2014 and it is over.  looking back on 2010 we were so new. so eager to participate and knew about 3 people in the rett family.  now, i feel like i have a friendship with nearly every parent. i call many of these people very close friends. and im so glad to be a part of it.

it is hard to explain how easy and comfortable it is to be around this "family".  easy really is the best way to explain it. we look out for each other and take care of each other and anticipate each others' kids needs.

i ran myself ragged and celebrated a little too much saturday night.  but my family was there for me. amazing support. it is hard for me to fill so many roles all in one weekend-coordinator, regional rep, mom, wife, is a delicate balance. especially when it feels so easy at the same time.  im not making much sense...

but, a lot of good is happening.  a lot.

i was asked to be on the board of a new foundation started by colleen who is a good friend and rett mom.  she is insanely awesome.  and she and i have grown a ton on this journey together.  we dont even recognize ourselves anymore.  she had a wonderful idea-to help ease the financial burden for families who are willing to participate in rett trials.  (do you know how cool it is that I can say trialS-plural? )  the fact that there are two large clinical trials going on right now but they are having trouble filling them really bugged her.  so she did something about it.

she started raising money, then decided to start a nonprofit (which is not easy) and then asked me to be on the board.  we have had three board meetings all via google hangouts.  it feels great.  im basically her cheerleader-she calls me and says "i have this idea" and I say "that sounds fabulous"! and then she calls hotels and books rooms and pays for them with money that has been raised and wow. we have helped several families already.  currently we are helping families with their hotel costs for the screening visits for the NNZ-2566 trial but we hope to expand to the igf1 trial as well.  colleen and her daughter claire are setting the best example.  they have just returned from boston for their screening visit. and im so proud of them, so grateful.

speaking of the igf1 trial-a paper was just published showing the success of phase one of that trial.  it was shown to be safe and efficacious.  its amazing.

last sunday my old friend Tara, ran her first marathon in honor of my goose.  and she didnt just run a marathon, she ran an 8K the day before and she was an official rett racer-she has raised $750 so far for IRSF. and she crushed her goal time. and she did it with avery written on her hand. did i mention that i havent seen Tara since maybe 1992? and that it is only through facebook that we even are in touch? amazing.

that same day a badass dad in illiinois finished a 5 day 150 mile run across illinois for his daughter cammy and IRSF.  video updates and pictures and everything about all of it made me cry.

and in between all of that we have had some really great times that are not rett related... dinners with new friends, nolans rehearsals, baseball, playgroups, great weather, avery using her device a ton...

dont get me wrong, there is still terrible.  screaming, hand mouthing, daily stresses, diapers for a 7 year old, girls in and out of the hospital, feeding tubes etc...

but there is light, lots of it, at the end of this tunnel and we are barreling towards that end. and so far we have made it.

Wednesday, March 5, 2014

so much

so so much is going on.
this weekend will be the 5th natural history study that i have coordinated.
every 6 months for the past 8 or 9 years amazing teams of researchers have flown to oakland (and several other sites over the us) to collect data from girls with rett and their families.
this means a schedule over two days of about 60-75 families with three different research teams, lunches and tables and reservations, rooms blocks, buffets, slideshows, microphones, coolers, fliers, nametags....the list goes on and on.  plus clinic on friday.
it also means ill be working pretty much all weekend-going going going-all weekend. answering questions, putting out fires, running around in circles.
im feeling pretty relaxed about it now that this is my 5th time.  but then i feel like i must be missing something if i feel so relaxed. but it always works out. tomorrow ill scramble around my office getting everything done and ill stress and ill worry and it will all work out fine.

nolan has started baseball and also rehearsals for a little variety show group called Star Quest.  he has rehearsals every sunday and the show will be the 26th and 27th of april.  he is just in the background cast and who knows if he will really take to it or not-but it is fun and im super excited to see the show.  i saw some of the first rehearsal and these kids who have been doing it forever are talented!

baseball is a big deal. Red is helping coach Nolan's team (red sox!) which he loves. but we just got the game schedule and there are 22 games! some weekends its friday night, sat and sun!  this is our first foray into extra curricular activities and wow, it is intense.

but for now this weekend is all i can think about.  how awesome it will be to see so many rett families all under one roof-all making a difference, all making history.  im still in awe of the research teams and how lucky i am that i get to email them and ask them things and help them out. it will also be a little sad as this is the last time this will happen in oakland.  it is many families' only chance to be around so many other families that are just like them. a place where no one is annoyed by your child's noises or quirks.  a place where other parents have just as quick of reflexes as you do when your kid goes for the front door. i know by sunday ill be toast.  but i also know that i get to go to dinner with the research teams and thank them for all they have done-for dedicating their careers to our girls, my girl, our family.  to thank them for it all-so so much.

Wednesday, February 19, 2014


so it is just past midnight.
i dreamt of her last night.  well, a penny actually.
i was sitting down on the edge of a fountain-the kind you would find in a town square.
i had my head in my hands.
i was down about something.
i looked down and there it was
a shiny penny.
tail side up.
and i smiled.

my lovely mom has been gone for seven years.
will i always sit here on this couch reflecting about her? every year?
will i ever stop thinking about her daily?
is she able to see me?  is she proud?
sure she is. i know it.
but it doesnt change the fact that I cant ask her.  i cant ask her anything.

sure, she would criticize.  sure she would find somthing wrong.
but she would be here.

i miss her.
i miss her voice, her nagging and bragging.  i miss her.
i miss her style, her beauty and her vanity.
i miss her thoughtfulness and her generosity.
i miss her wealth of knowledge-not just about life, but those little details of my childhood that I cant quite recall.  

i miss her "pull yourself up by your bootstraps" advice and knack for making everything  seem surmountable-her strength and vulnerability on those days when everything was falling apart.

i miss her.  but she is in me.  i am her in so many ways.  the good and the not so good.
seven years.
i hope i dream of her tonight.

Sunday, January 26, 2014

10 miles

i ran 10 miles today. definitely procrastinated getting out there but finally did.  it was a gorgeous day and under 50 degrees, just like i like it.  this time i drove to the gym and started there-the iron horse trail goes right by the parking lot so it is very convenient.  and im so so tired of the trail from home to there-ive run it too many times to count now. 

took what felt like forever to get halfway to halfway and i got dizzy a couple times before i hit halfway.  just after, i decided to check my phone and i had 2 texts.  one of my besties who knew i was running said "Go E! Hope you're having a great run!" which made me smile.  then a co worker texted me "you are pretty f*#!^&* awesome.  keep that s#*% up" which made me laugh.

then because i was already on a little walk break, i checked facebook.  there was a message from a childhood friend, Tara.  A month or so ago she contacted me saying she was running  the Shamrock Whale Challenge (super badass-8k on Saturday and a full marathon sunday) this March and asked if she could raise money for rett syndrome in honor of Avery.  I guided her to the rett racers program through IRSF-after I did that crazy cry where you laugh at the same time because you are so damn touched you cant take it.

So her message today was that she finally set up her page and would it be ok to link to my blog and steal a pic of Avery? And that she runs past my old house when she is out on her runs and it brings back fond memories.  I immediately started running again as I sniffled and wiped away the tears that were jumping out of my eyes.  I had this feeling like everything was just right at that moment.  that my life, our life with Rett, is exactly what it is supposed to be. 

i know this seems like a theme and im repeating myself a bit here-but i cant seem to get used to this new place im in. its definitely not all unicorns and rainbows, but its pretty great.  

Wednesday, January 8, 2014

from why to thank you

over the past few years there has been a variation of this going through my head: "why the hell did this happen to us?" why why why why why?

two times this week, i have gotten on my knees, hugged Avery and said thank you. one of those times was tonight.

we did something tonight that is becoming kind of normal in our family. and it has likely been something normal to many of you for a while.  we took the kids to a pizza place for dinner. nolan is registered for baseball here now and they had a 10% off night at our local round table.  this place is a mini chuck e cheese.  ok a mini mini chuck e cheese.  but games and tickets and prizes and everything.  we met our friend there with their two kids and it was great.  sure avery screamed and there were upsets over tokens and prizes and we spent a fortune on the games- but it was great.

when we arrived there was literally only one other family there.  soon after, nolan was asking for money and we realized we didnt have any cash to get tokens.  so i left to get money and when I came back, as I approached the door i could hear avery from the sidewalk.  uh oh.

i walk in and hurry to the back-red has her cornered with her lemonade and she is just pumped.  yelling because she is pumped to be there.  then red tells me "that kid over there came over and said hey I know her from school!"  smiles.

the place started to fill up-a birthday party and tons of kids in the game room.

i see the kid red told me about and ask him if he is in Avery's mainstream 2nd grade class.  he says no.  so he knows her from the playground or just from campus.  pretty cool.

we are sitting near the "game room" and notice a dad playing the basketball game.  He is really into it.  slamming baskets.  so red asks him about it and he tells us he is trying to beat the high score and has been for the past 6 months. we kind of keep talking to him in passing and Nolan has started talking to the guys youngest daughter.  then the basketball guy comes over again and we are talking about his attempts at the game when he says "so, do your kids go to Strandwood?" and I say yes!  Avery is in 2nd grade and Nolan is in TK.  He says "hey I know Avery!  cant believe I didnt recognize her!"  turns out they bring their dog to school at pick up and one day Avery really took to the dog.  he said they even spoke to the teachers about bringing their dog to the SDC classes...

It was a cool moment.  because a year ago we wouldnt have taken her to round table.  because there is this whole community of people who know my daughter and care about her that i dont even know about. because avery is so sweet. because we have grown so so much.  because there is hope. because this life is not what we expected but it is becoming what we needed.