Sunday, October 28, 2012


So, I did it.  With a lot of help.  With a lot of pain, sweat and some tears.  It wasn't pretty.  But I did it. I finished a half marathon. A very hilly half marathon.

It was likely the hardest task I have ever completed in my life.

There were 18 (friends of mine and friends of friends) of us on Team Boston or Bust.  12 of us stayed in two rental homes on a gorgeous property just outside of downtown Healdsburg (which might be the cutest town ever) and I stayed with 5 of those girls in one of those houses. Many of us had trained together-some had completed several races (full and half marathons) and some were first timers like me. We thought about getting team shirts but never did-I had created a shirt months prior but never ordered them-little did I know two of the girls bought me the shirt.  The front said boston or bust-and on the back chasing the cure for rett syndrome  

We arrived on Friday and our house had reservations for dinner at Scopa in Healdsburg.  It was delicious.  We had pasta, pasta, chicken and more pasta.  We stayed up too late but set our alarms and went to bed. We woke up Saturday at the crack of dawn (aka the middle of the night-stars were still out!) to drive to the tour bus stop that would take us to the start of the race in Geyserville.  As we waited in line for the bus to arrive we met up with some of the other girls and chatted.  Mostly about how nervous most of us were, or excited.  The nervous ones were getting encouraged by the seasoned runners. There were costumes all around.  It was a bizarre feeling. Standing in the dark, cold and just plain nervous with lots of grown ups wearing tutus.  I would have taken pictures but I was so worried my phone would die seeing that I had to run forEVER.

We got to the start and wandered around.  We met up with some more of the crew and waited.  The announcer asked who was running their first half marathon and I raised my hand so high-I was pretty proud of myself for just being there.  The sun had come up by this time and it was looking like a gorgeous day.  Before I knew it, the race started and we were off.

It was just beautiful.  We all ran our own race.  I stuck close to my friend Sarah (who has never run more than 6 miles and was as nervous as I was--she finished way before me by the way!) but spent a lot of the time alone.  I had to remind myself to look around and take in the scenery--Not only the vineyards but plenty of hilarious and creative costumes.

It is a wonderful feeling to be around perfect strangers who will cheer you on if they see you struggling.  It is one of the most supportive environments to be in.

Around mile 8, I hear someone behind me say "hey, what's rett syndrome?" I look to my left and a woman comes up next to me with a genuine interest showing on her face.  I was so caught off guard I just said "its a neurological disorder-my daughter has it-they are close to a cure-im running the boston marathon in April on Team Rett-if I make it through today!"  she placed her hand on my back and said: "this is nothing compared to what you do every day" smiled the sweetest smile, and ran off.  pretty cool.

I thought a lot about Avery around miles 9 and 10 as my legs were starting to yell at me and my toes were going numb.  I thought of how hard she tries just to do the little things we take for granted.  And that yes she can walk and even run but she will likely never run a race.  I realized that yes, there were a LOT of people there running with me-but there were even more that weren't there.  And that just being there was really enough. That I was lucky to be there.

Then I hit mile 11 and thought "you can do this-two more miles-dont stop" but I kept stopping and walking.  I could only run about a tenth of a mile at a time. I was getting the chills, despite the morning sun blaring down on me. I was dehydrated and exhausted.  I was thinking about having to run twice as far in 6 short months.  I was thinking about the finish time I had figured I might make-and when I passed that I was pretty defeated. I was mad at myself for even setting an expectation for a time.  At miles 12 I told myself to run without stopping to the finish and I couldnt. I walked.  I was texting my friends to go to brunch without me-but at 12.7ish, there they were-cheering me on. I gave them a double thumbs down-but they just smiled and clapped and cheered. I was back to running at that point-I could feel the finish coming up.  Two girls ran past me and one of them screamed "Mile 13 is my bitch!" and that made me smile. I could see the 13 mile marker, and I couldnt feel my face, or my feet.  My legs were so tight and my fingers puffy.  My 2.2 hour playlist had just started to repeat. I could now hear the announcer reading names, I looked down as I crossed the finish line because I was so overcome with emotion and all I could see was the photographer snapping away-and I was doing the ugly cry.  I never heard my name.  I grabbed my finishers medal and saw Sarah with a huge cup of water for me. I hugged her and chugged.

I ate an apple.  It was the best apple I have ever had in my life.  I got so many hugs.  I searched for water, found it and drank a ton. We got to have a free brunch thanks to Anne who has a Subaru (major sponsor of the race). Everyone did awesome.  One of us might have come in 6th place in her age group. One of us might have puked-and then rallied.  We all felt proud of each other and ourselves.  We cheered on those who finished one hour after I did.

My official time was 2:35:34 (I was hoping for 2:20ish).

We went back to the house and popped the champagne,  got on our suits and laid in the california wine country sunshine.  We hot tubbed.  We got a second wind, got dressed and went downtown. Found a fancy pizza place and watched the Giants game during an early dinner.  We went back to the house to finish the game and then were all in bed before 11.

We woke up sore and exhausted.  But we did it. Together.
Im so lucky to have such great friends. thank you ladies!  All of you!  Im so proud to to know you all!
Now the real training begins. 168 days til 26.2.

10 of the 12 before the race!

ready to go!!??

After in the Subaru tent!!
our yard

our backyard

heading out!

Tuesday, October 9, 2012

life changing

The phone call we received almost three years ago when we learned Avery had tested positive for Rett syndrome was life changing. Our lives now go down a new path.  That path has brought many things into our lives that we never would have experienced had it not been for that phone call.  We have met the best people, participated in inspiring events. 

Life changing phone calls don't happen too often and they aren't always bad news.  On Monday October 1st, I found this email in my inbox:

"Good morning everyone and congratulations! You will all be Fundracers for Team Rett 2013 in the Boston Marathon!

I will send member names, emails, and more information shortly but just wanted to let you know so that you can start spreading the news and generating some buzz.

Thank you all for your incredible motivation to train, raise awareness, and funds for Rett syndrome research. We are currently reviewing all research projects to determine how our funds will be allocated. For those of you out of state, Rett Syndrome Association of Massachusetts is the organization that rec’d these bibs from John Hancock.

Thanks! Go Team Rett!"

I got in.  Im on Team Rett.  I bought my plane ticket and am going to Boston.  One of my best girlfriends is going too. Two amazing rett mommies and two awesome rett dads will also be there. WOW.  Talk about life changing.  Im going to run a marathon.  THE BOSTON MARATHON is the most prestigious marathon around.  This is huge.  A once in a lifetime opportunity.  I cannot believe it.  Running a marathon was on that list in my head of things I thought I would never do. Ever. But Im doing it.  I was inspired and motivated and I cant wait.  Im going to need your help though-part of the deal involves fundraising for the Rett Syndrome Association of Massachusetts.  I must raise $5000 in order to run. I know I ask a lot of everyone to support our cause.  But I cannot stop until there are real treatments for my girl.  It is within reach.  We can get there and you can be a huge part of it!  Check out my fundraising page here and please share my story:

Friday, October 5, 2012

i hate it, but...

I hate rett syndrome, but i love this life it has brought me.  sure i would give it up, give up anything to make my girl better.  but...
this week I got to conference call with some really cool/smart/dedicated people in the field.
today i got to participate in clinic once again (its my job but i still cant believe it).  i got to be around the most caring and fun people ever.  i got to be with families that are so strong.  going through bigger hardships than we are and still pushing.
tomorrow i will welcome about 50 families as they come to be seen as a part of a research study (avery included). and we will hug and visit and laugh.  and then on sunday, the strollathon.  what a day that will be.  i have been a part of raising nearly fifty thousand dollars this year.  last year we had a part in raising 36K, and the year before was 72K.  thats over 150 grand.  for research.  to cure rett.  that day is coming.  what a day that will be.  and I love that we will have had a small part in getting there.