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


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



because I dont want to sit around waiting...  i want to be IN this.  ALL in.
and because,

Tuesday, July 8, 2014


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. 

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.