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Saturday, November 29, 2014

thanksgiving and the blues

we had another fabulous thanksgiving.  food for days, great wine and our fabulous family.  we hosted reds grandmother (Franny), his parents, his two brothers plus their wives and two nieces. we were just missing his sister and her family, and Barb of course.
i spent all day in the kitchen which is fine with me.  it was a relaxing morning.  then at 3 everyone started showing up.  it was a gorgeous sunny 65 degree california day and we got to spend some time outside having yummy apps and playing catch. i got to speak to my 94 year old grandmother and we laughed so much about how she could have raised such a bossy daughter (my mom). im so thankful to still have her in my life and for her to still be so sharp.  she is wonderful.
our dinner was awesome, even though i totally butchered the potatoes (turns out you have to mash them when they are piping hot!).  Franny took on the gravy and did an amazing job on it.  i love having my house filled with family.  Avery does too.  she is like her mommy that way-we love a party.  especially with people we are comfortable with and love. we all went around and said something nice about the person to our right and it was beautiful.  there were laughs and tears and hugs.
slowly, kids fell asleep and people left.  Sarah and MT stayed the night and I spent the next day (almost all of it) cleaning dishes (i dont do dishes until company has left!) and listening to holiday music.  i was full of holiday spirit.
then this morning, Nolan asked me to charge an old iPhone.  when it came on he played around with it and then brought it to me asking how to get out of the voice memo screen.  first i had to listen to them.  they were all from 2010. most were avery screaming and crying.  some were of her laughing and babbling.  then i heard the one that got me.  you can hear me in the background asking her to say "Daddy" and after a few tries, she says it.  so clearly.  i had forgotten what her voice sounded like and I burst into tears. i brought it to let Red listen and he got choked up as well and said he didnt want to hear it again-too hard. i posted it on FB and got so many sweet comments like "the day will come again when you hear it again!" and i know that is true but today has just been tough.
Red took Nolan ice skating with a buddy and Avery and I stayed home. I took her on an errand and took the long way home to just waste time.  i drove near the movie theater which was a big mistake.  families all together walking around downtown, going to the movies-things that are not impossible for us (well, maybe going to the movies) but are very difficult with her yelling. it makes me sad and i remember that the holidays are always a tough time for me.  even though i look forward to them so so much, it creeps up on me that it just isnt the same without your own parents and and a kid who cant feed herself or open presents. but then i go back to the beginning of this post and i have so much to be thankful for. and a future that is truly so bright.

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?


Tuesday, July 8, 2014

eight

sometimes in the morning i go and snuggle with avery. those mornings are rare as she is usually already awake before anyone stomping around yelling in her room.

today i awoke to silence and crept in to see my birthday girl. how peaceful she was there in her bed with her new duvet cover (no more pink) -so cozy and so asleep.  i had stayed in bed a bit longer than i should have and we were running behind for summer school.  i tired to rouse her and nothing.  she just shifted ever so slightly and kept her hands still and her eyes closed.  i whispered to her "happy birthday goose" and let her stay.

i went to get nolan up and got my coffee and went back in to her.  still so at peace and after one more failed attempt to wake her i decided to get in the covers with her.  we could be late today.

nolan then came in so excited for her big day started to shake her and yell happy birthday! she opened her eyes and as the happy birthday wishes started to settle in she smiled so sweetly.  a dimple popped when i mentioned we would open some presents tonight and have a family dinner celebration with cake on sunday.

i cant believe she is eight. i love watching her grow up.  i love being able to still see that newborn face that has changed so much but really hasnt changed at all. here i sit on this same couch the night before she was born and many days and nights after with her on my lap (time for a new couch) and can see so clearly all that she has been through.  all that we have watched slip away and the triumphs she has shared with us. but,  i can now look back and see more good than bad.

and still...it has been over 5 years since i have heard avery say "mommy". i have no idea if she loves the new duvet cover or wants the old one back or if she even cares. i cant tell you if she has a favorite tv show or if she is dying to go to a movie. i want to know her better, know her secrets and wishes and hear her tell me im annoying or that im embarrassing.

one day.

for now, she is eight. and ill take the morning snuggles, the smiles and the dimples. forever.

Tuesday, July 1, 2014

#rettconference2014 (or was it #conference2014? or #rettsyndrome2014?)

five years ago red and i went to our first family conference put on by IRSF. we were 6 months into this rett thing and literally knew like 2 people. we sat in the way back of the ballroom in colorado springs and listened attentively and took diligent notes and couldnt believe this was our life.

last night i got home from my 5th conference. where i felt as though i knew nearly everyone i saw and only sat up front. my note taking was a little sparse but the knowing head nods and tears that start in your throat and fly out of your eyes were many.

five years ago i listened to dr. percy talk about rett syndrome 101. i heard him speak about the types of things they were "looking into" as treatments for symptoms of rett.  i heard a lot of "rett was reversed in a mouse but mice are very different than humans".  i heard hope-and could reach for it.

this year was different.  i heard dr percy speak about rett.  i heard him speak about how far we have come so quickly. i saw the tears well up in his eyes as he thought about Dr Rett and the smile he might have on his face if he were here to see where we have come.  (when i say "we" I mean the researchers/doctors/scientists etc!).

as the universe (or fate or destiny or whatever you choose) would have it, just as the scientific portion of the conference merged into the family portion, neuren pharmaceuticals announced that enrollment had been completed for the NNZ-2566 trial.  and on the surface that seems like incredible news-as it is.  but it gets better.  it was just TWO years ago when I wrote about the conference highlights in New Orleans.  When larry glass (CEO of Neuren) spoke to me and said "not maybe, WHEN",  and when he spoke at our tribute dinner and exclaimed "im in!" When CSO of rettsyndrome.org/IRSF closed the conference with "my pledge to you, it will be done fast".

two short years ago. remember my "vision"?  the one where Avery is a typical 10 year old?  she will be 10 in two short years. 
in-tense. 

so my trip started late at SFO. i stopped at the restaurant for a burger and was seated at the same table where colleen and i sat on our way to conference in boston.  i took it as a sign that things would be good.  and they were. lucky for me even though i was in the middle seat for a red eye, my wine was free bc the seat ordering feature was broken.  i also bought one of those totally geeky neck pillow things. i slept for about zero minutes on the shortest 4hour: 45min  flight ever. i arrived at the hotel early.  like 6:45am. and my good friend kori (she is cure rett) from across the pond was awake so I stormed her room and ended up staying there the rest of the time and Im sure I now owe her at least 467 dollars.

from there it gets a little blurry...there was sightseeing (white house and many DC bars), meals and drinks at wellingtons, running into friends in the lobby, buffet meals, breakfast with a super smart researcher, hugs, laughs and tears.  we heard the author of "welcome to holland" emily perl kingsley, speak about her life bringing light to disability to sesame street and her journey with her son who has down syndrome. the sessions were amazing, the table for clinic and our new brochures was perfect and the rettland foundation table was there too.  there were lillie pads and snap wraps. and tons of cute little girls.  there were interviews and photo shoots. 

then it was time for the tribute dinner which is always so special. this year we joined with the CDKL5 families which made it even more special.  the tribute video was 16 minutes long! awards were given out, we were introduced to some of the "first timers"-those that were there 30 years ago when this all started. parents that paved the way-without the internet, without much to hope for and they are still standing. and lookin good. sitting at the table next to us was a family from san francisco who had a daughter with cdkl5-i was able to tell them about our clinic. that was cool.

on saturday the highlight was the sibling panel.  i go to this against my better judgement-it is bittersweet to hear a rett/cdkl5 sibling talk so openly in front of so many about their deepest thoughts. oh the things they said. the tears and the laughs they caused. they were so honest and real and funny and wow.

saturday was a pj, dessert and wine in bed night.  until our neighbor knocked on our door.  her sweet daughter was doing something odd that she had never seen before.  i was able to call dr jones and get her to come check her out.  this was at 11:30pm.  they administered rescue meds after determining it was seizure activity but it wasnt seeming to work. we needed to get her additional rescue meds just in case and a text here and a call there and we had it.  this family is amazing.

and as if it couldnt get any better, i finished up by having breakfast with dr mary and kori then lunch with mary paige and judy. all rett rockstars.

then i got picked up by sheri-my bff from college and her three cute and adorable kids.  i havent seen her in 7 years and as ridiculous as that is, its like no time has passed at all.  we had great chats and i so loved getting to know her sweet kids. even though i wish i had more time,  it was just about 24 hours and it was perfect.

five years ago i thought how is this my life?  now i think how is this my life....but it has a whole new meaning.
colleen, dr mary, lauren, sherri, shannon, kori, jane, jesse, me, dr percy, chris, 

kori, jackie, carrie, me, lisa and grant

me, kori, sherri and lauren if front of the white house in da capital.

sightseeing includes bars 

me, baby eva and my sheri

fran, me and kori

tribute dinner

rett racers reunite.







Thursday, June 19, 2014

santa barbara

the four of us went back down to santa barbara (or as some call it, normal island) last weekend.  we went for the 3rd annual paddle for sorel-a fundraiser put on by our awesomely cool friends Chris and Megan-for their daughter Sorel who has Rett.  it is a really cool event.  there is a send off early in the morning at one beach and then a welcome back at another beach-9 miles away, followed by food and a raffle and fun.

we had every intention of being there for the welcome back portion as we had been last year.  but we got a late start saturday morning and then hit traffic and then my flip flop broke and then we got there and it was over. but there were still hugs all around-some playing in the sand, visiting, chip eating and laughs were had.

we were just in time to head back to megan and chris' place which is maybe one of the most comfortable and comforting places in the world. there were several other families there with their daughters with rett syndrome.  several siblings.  neighbors.  it is just about the coolest place to be.  megans parents were there too, in town from connecticut and they STILL let us crash in their house.  there were air mattresses-couches-kids crammed into every corner at bed time.

colleen and jared were there with claire and chloe.  they make me smile-for so many reasons.
laurie and eric were there with josie and jocelyn.  loving getting to know them better.
silvia was there with olivia and brianna and ava and there is nothing like a silvia hug.
and megan and chris-they are the most relaxed chill sweet understanding giving people.

it is comfortable. it is easier. it is normal.

the next day we took sorel, xander, avery and nolan to the pier in SB.  We went to the Sea Center.  We went to a restaurant for lunch. Avery yelled.  she pulled her plate off the table and covered her mom in tartar sauce. and it was ok.  I gave the couple next to us an avery card to explain the yells and the strollers/wheelchairs.  as we left he said to me "hey! good luck to you guys-keep up the good fight" and it was rad.

i loved it all. the traffic, the flip flop mishap, the missing the whole reason we drove 5 hours each way. so worth it to be with these people. loved it.

Sunday, June 8, 2014

oops, missed May.

havent written in a while.  sometimes i get a little bogged down in making sure what I write is funny or touching or moving and forget that i just need to write. i missed the entire month of may for really no good reason and its a total bummer because may was mostly awesome.

notes and words was the beginning.  played golf first with brian and leeann and then dinner at a fantastic restaurant called Duende in Oakland.  the show was amazing as usual.  we had a blast.

Nolans class had muffins for mom to celebrate mothers day.  it was very sweet.  we had muffins and fruit and the class treated us to some songs.  mothers day was amazing.  lots of relaxing, some pool time, a little champagne then a last minute get together with some family.

we saw our niece Hattie get baptized in the city and the kids were really good.  the day after was spent in Napa with Julie at a charity fundraiser event at Hall Winery.  A gorgeous day with yummy food and wine-plus it benefited the clinic among other deserving charities.

i attended the samantha corpus golf tournament dinner which is always a good time.  sat with some families and drs. was overwhelmed once again by the generosity of the people in attendance.  this tournament is in its ninth year and has raised over 1.4 million for IRSF (now known as rettsyndrome.org).

then it was time to celebrate my 40th.  sure it was a month early-but it was perfect. so many friends made the trip to tahoe-we got to see our friends pete and val from CO (whom we hadnt seen in over 4 years).  red and I drove up on thursday and didnt come home till monday.  couldnt have done it without gramma taking the kids and keeping them safe and happy!  we sunned and cocktailed and sunned.  the boys golfed, we ate, we gambled, we bowled.  it was perfect. i felt the love for sure.

i returned to real life to some terrible news.  one of our clinic patients had passed away over the weekend.  she was 26.  it was so sudden and shocking-especially since I had just seen her parents at the corpus dinner the week before.  then there I am watching them grieve for and bury their only child. it was a beautiful service.  her friends were there-one of whom spoke using his speech device.  judy from our clinic spoke-she had know this young woman for 17 years-it was so moving. that was the 2nd funeral i had been to since I started at the clinic and I hope I never need to go to another.  it is a terrible feeling to be able to picture it happening to you. it is just so sad.

the good thing about being sad is when it turns to anger and you are forced to do something.  im on the board of a newer foundation called rettland foundation.  we help lessen the burden of paying for clinical trial travel expenses-there are trials going on and there are families that want to participate but they cant because of finances.  we want to be able to do more.  if you can help check out rettland.org -avery thanks you.


Wednesday, April 23, 2014

boston- take two

an email in my inbox today broke it down. Congratulations on finishing the 2014 Boston Marathon! it said.
Erica Robertson
Net Time 6:02:09
Overall 31013/31931
In Gender 13846/14356 (Female)
In Division 6729/6979 (F18-39 Age Group)

It made me laugh.
I knew the 6:02:09 and I knew there werent that many runners coming in behind me-but less than 1000! in a field of nearly 32,000!  too funny. and it is so not fair that im up against 18 year olds!

well before i crossed the finished line (holy crap i can finally say that) my garmin died.  likely due to it telling me too often that I was "behind pace".  no kidding, im walking! so i wasnt sure exactly what my time would be but i knew i was not going to reach my goal time around mile 13. and the time on the clock when you finish is the time from the very first wave so there is math that has to happen to figure out where you are and after that much pavement-no math is happening.

there are a lot of reasons for my lack of speed-

it was REALLY warm out. and super sunny.  nothing like 2012 (upper 80's i cannot even imagine) but still way too warm.  and our wave went off at 11:25am which didnt do us any favors.

i did not train as well as I needed to.  not even close. and I knew that going in but i thought the crowd would get me there-and they did, just not as fast as I had hoped.

in reality i truly didnt care about my time, just that i would finish a race that was literally two years in the making.

i wanted to really take it all in-again-and focus on the people-the special meaning of this race, this year.  coming back to take back that finish line and help boston recover a little from the tragedy a year ago. 

this time was so different from last year.  military police everywhere, boston PD as well.  helicopters overhead. the crowds were even bigger.  so much cheering.  the wellesley girls louder than ever.  deafeningly loud. i smiled a lot more, and struggled more. 

i stopped to take a photo at the spot where the race ended for me last year.  an officer asked me if i needed something and I said-no this is where i was stopped last year, i just want to take a picture.  he said " yeah i was here too" and i looked at him and just said "thank you".  i thanked a lot of people.  regular people that were spending their day cheering us on-even the slow ones.  they stayed the whole time.  and they thanked US.  for running for boston.  a kid about 12 was yelling like a mayoral candidate: boston is only as strong as its people!  thank you for running for boston to make us stronger!  we are boston strong! he was so into it and meant every word.  

i had pretzels, oranges, a giant strawberry, gatorade, and a chocolate chip granola bar along the way.i took ice and got sprayed by several water bottles and hoses. i declined a PBR, a heineken, many otter pops and a push pop.  

there were again many great signs: "you have stamina, call me!"  "because 26.3 would just be CRAZY!"  "i thought they said RUM!" but my favorite was "when you feel like quitting, remember why you started."  i pointed at the woman holding that one up and smiled.  it is for the girls.  just keep moving.  

the entire 5 or so miles from where I was stopped last year to the end was new to me.  it was great to see the 1 mile to go sign and the 1k to go sign.  then the 26 mile marker.  boy that .2 seems far at that point.  but by then you are on boylston.  the cheers are intense. you literally feel like there isnt anyone else there (and hey in my case there actually might not have been), but you still feel like everyone is just cheering for you.  it was one of the most amazing and moving moments of my life. im sure I didnt walk one step on Boylston.  i looked to the left, where the bombings had been last year and thought of last years victims.  and I put my hand over my mouth and cried.  and then it was there.  the finish line.  my hands went up and it was over. i made it.  

i walked over and got my medal then my heat sheet, then some food.  then i walked to the Taj and met Red and our friend Gary for a drink or three. we sat in one of the finest hotel bars in the city sweaty and gross and owned it.  Red had finished in 3:55:55, amazing. we did it. we finished Boston.  Strong. 

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, friend...it 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

Seven

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.
sure.
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.