Wednesday, November 20, 2013

the best company

many of you know that i will be returning to boston to finish what i started in april 2014 for the 118th boston marathon.  that in and of itself is exciting.  there are 10 of us returning with BAA bibs (given to us as invitational entries due to the terrorist attacks in 2013) and 15 with Team Rett bibs.  25 of us.  im so excited to go back.  it will be so emotional, so fulfilling, so triumphant. i knew several of the team rett runners last year because they were also rett parents.  one was a close friend-she actually finished the race (3:40:07!!) and is not returning in 2014.  but the others i didnt know.  and so i turned to facebook to get to know them.  i started a page for us-invited everyone that was on the team and also on facebook to join and introduce themselves. we shared what races we had done, our training plans, our connection to team rett and just got to know each other-as well as you can on social media. we cheered each other on as we went on our training runs, did smaller races and fretted over blisters and chafing and shoes and armbands. many days i would post as i headed out for a long run-dreading it. and i would get a response like "just let it happen, enjoy the beauty around you" and it would work. it would be my mantra through my run.

then the day came where we were to meet in person-the day before the race at the home of a wonderful woman and rett mom, Maria.  we met and hugged and chatted. it felt good to have gotten to know many of my team mates prior to that day-the ice had already been broken and we already felt like a family.

then the events of the day unfolded and we connected via that page. got in touch, reported who we had heard from who was ok.  thankfully we all were physically fine. and our family bonded even closer.

since april we have kept posting on the page and recently have just invited our newest team members to the page.  one of whom is my husband!  the best company for a marathon-especially one we are running in honor of goose. 

we start our training in about 2 weeks.  it will take some serious coordination but im so excited to go on this journey with Red.  he is too. 
the countdown is on.  151 days!!

Thursday, November 14, 2013

and now for something completely different.

something strange happened on saturday and i didnt even realize it till sunday. 
it went like this: we woke up and red went on a run, i hung with the kids and we had breakfast.  nolan was nursing a sore throat and a fever so we took his temp (normal) and laid low.  when red returned from his run he got ready to head to the Cal game.  i decided to go to gramma's with the kids.  all the cousins were there-we ate lunch, we relaxed, had a couple beers. the kids ran around and fought over hats and balls.  they helped the yard guy dig holes and cut branches.  it was a nice lazy saturday. around 3:30 nolan started to feel terrible again and we packed it in and went home.  Red came home not too long after we arrived and we just had a lazy night in.

sunday we woke up and had to cancel some plans (a bday party and a casual dinner date with friends) due to Nolan's fever being back up to 101.  we hung around the house, got lunch, rested, organized.  nothing special.

im not sure when it was that it hit me:

saturday was our four year anniversary of avery's diagnosis. and i totally forgot. completely.

funny thing is i remembered on Friday.  at clinic I even mentioned to people that the next day was our 4 year anniversary.  and then I spaced.  and Im glad i did. and i'm shocked at the same time. when you get the diagnosis-any diagnosis, i imagine it is tough to forget that date-youll always have it on the tip of your tongue and can tell anyone anytime those numbers. but it doesnt mean you have to dwell on it. or dread it.  or even acknowledge it.

i think the only reason i do acknowledge it is to measure just how far we have come. and we have come a long way.

Saturday, November 9, 2013

the tough times and good friends

my friend colleen over at Adventures in Rettland asked me to guest post on her blog this month-the topic was thankfulness/gratitude-here is what I wrote:

suddenly it is november. 
i swear i just put away the christmas decorations.  time certainly does fly.
november is probably one of my favorite months-especially in California with the weather we are so lucky to have. but also because of thanksgiving, family time, amazingly colored leaves. it is a time to give thanks, and reflect on the year that just flashed before our eyes.
i think i’m thankful everyday-at least subconsciously.  I know it is pretty amazing that I wake up each morning and can swing my legs out from under the covers and walk toward the coffee maker. i know how lucky i am to have a husband and two kids under my roof who drive me crazy, make me laugh, and love me unconditionally. i have food, a car that works, a job that fulfills and friends and family that i can turn to in tough times.

tough times.  i’m really thankful for those. honestly.
grade school was tough, I was picked on (yeah we all were but anyone else have their entire fourth grade class in a club called the I Hate Erica Club?).
in high school i made some poor choices that took me down some hard roads.
college: academic suspension after my freshman year. (I begged the Dean to let me come back and he did-ended up with all A’s and B’s my last two years).
had some majorly huge falling outs with dear friends along the way. i have suffered with minor anxiety and depression off and on since high school.
my parents both died when i was relatively young-my dad when I was 27, my mom when I was 33.
two years after my mom died, Avery was diagnosed.
some of this I had to get through alone, but most was made better by my friends.  all of it shaped me into the person i am today-strong, a fighter, imperfect.  so much good has fallen into my lap because of the bad.
and the friends? oh the friends. new and old. i have learned so much from my them-about who I am, what I believe, what I cherish. my friends take me for who I am.  they know my deepest secrets and insecurities and they build me up and choose to stick by me. I have friends that encourage me to be my true self-to show my weaknesses, to be vulnerable.  they give me the space to do just that.  they call me out when im being an asshole, cheer me on, and hold my hand as my tears fall.
they laugh-at me, at themselves, at life.  they share honestly and openly in that perfect moment when it is ok to let go.  i wait for those moments.  those are the moments when you feel most alive aren’t they?  when a friend trusts you enough to look at you and say “i’m scared” or “i’m sad” or “i’m so proud of myself! I cannot believe i did it!”.  that -vulnerability- it is really what life is all about.
i wonder a lot if i would be this person had all those unfortunate incidents not occurred in my life.  i can honestly say that I wouldn’t.  i know it. you gotta have some tough in your life to really appreciate the easy.  otherwise the easy stuff becomes boring and can be taken for granted and you never see the beauty that comes with pain.
As my wise friend Colleen said “I feel like I have been given a front row seat to the most beautiful show on earth”. (i totally butchered that and might have left out an expletive…but you get my drift). either way she is right.
so i’m thankful for the tough times.  all of them. and my friends and family who have been, are, and will be there for me when another tough thing is thrown my way.

Friday, November 1, 2013

halloween 2013

this year has just been incredible.
last night was no exception-hell, all day was fantastic.
I sent Avery to school in her disco get up-go go boots and all and hoped for the best. and it was.
Red and I went to the parade-finally just one parade to go to now that both kids are at the same school. 
We are so lucky we could both be there. And Avery's smile was the best evidence of that.  she was in her glory.  they played Saturday Night Fever for her class when they walked around the blacktop. perfect. she smiled the whole way walking with her buddy Alexa and Miss Heather her aide (who is so much more than just her aide).
We snapped some pics and then we both had to head back to work.
the past few years we have been lucky enough to be invited to someone else's home for trick or treating but this year people were doing their own things and so we followed suit. We invited Reds siblings and the kids cousins over for pizza and trick or treating.  I raced home from work, stopped at the store for some last minute stuff and came home to find two happy kids ready to get candy. Avery was pumped, Nolan was counting the minutes till it got dark.  Everyone arrived and it was this awesome level of chaos as we prepared to leave the house.  We met up with our neighbors across the street and their friends and hit the street. Nolan was off and running-so independent and fearless.
Red was with Aves the whole time.  He carefully guided her up to each door-usually after the big crowd of little ones-to help her say trick or treat.  He might say to them "Avery cant talk but she sure loves candy" and honestly each one of our neighbors was so sweet. They would hold out their bowl for her to choose and then we would help her or say "oh she cant really use her hands" and grab a candy for her.  This was our first time trick or treating in our own neighborhood and we honestly dont know too many of the neighbors.  I feel like writing each one a note to thank them for how special they all made it.
We were nearing the end of the night and we approached a house. Two of the littler girls were right up at the candy bowl and were each helping themselves, again and again-and again while Avery stood behind them with Red and his mom.  Finally we said "ok girls, leave some for Avery!" and they walked off-the bowl was empty. The nice woman said "hang on honey let me get you some more choices" and came back.  She knelt down in front of Aves and said "here you go sweetie", holding out the bowl.  Avery looked at her and looked at the bowl and then bam.  She reached in and scored not one, but two pieces of candy.  she held them up triumphantly in the air as we all burst into a cheer.  It was pure magic.  The homeowners got it.  they just did.  Then Avery tried again but this time she went in too hard and knocked the entire bowl on the ground and it was hilarious.  Especially to Avery. Im so glad I had my camera and I captured the moment as she is looking at her Daddy with just a face full of joy.  She literally skipped down the steps and out onto the street ready for more. As I walked down to the street my neighbor was there and had seen the whole thing-she looked at me and said "that was incredible-I just got the chills!" and I told her I wasnt sure why I wasnt crying because it was so awesome. (Im crying now).
Avery tends to miss out on stuff because of her medications and her schedule but Im learning that there can be exceptions made and she can stay up till 9 on a school night for a special occasion and that it is totally worth it in the end.  Im so proud of her.  So proud to be her mom.