Sunday, June 3, 2012

cape cod strollathon

We took a quick little trip down to Cape Cod to participate in the 7th annual Cape Cod Strollathon for Rett syndrome. We've only ever participated in one strollathon before - the inagural event in Northern California in 2010. And Ryan wasn't even able to be there. So this was a first for the whole family. Our good friends the Holbrooks {3/4 of them, at least - their dad had already left for his internship!} joined us for the event and we were so grateful to have their support.

We drove down on Friday, hoping to get there in the late afternoon to spend ample time in the pool. After a quick stop at Target {do you hear the angels singing!?}, we got caught in some super awesome Friday afternoon Boston traffic that delayed us for more than an hour. Miss Ribbons didn't seem to mind at all per her usual chill attitude when in the car. This picture is one of my new all time favs, taken through the headrest on my seat. 
When we got to the hotel, Michelle and her boys were already there, so Ryan and Leah joined them in the pool while Kate and I lounged poolside {curse that c-section, but at least I had a buddy}.

We found a local restaurant to grab some dinner and then tucked ourselves in for the night.
Leah even got her very own queen bed and was out in about two seconds. 

Which is a good thing because Kate wasn't out. I think this was by far her worst night of sleep. She was awake, crying, for hours! Ryan and I were exhausted, but Leah slept through the whole thing. Phew! And Kate did finally tucker out. 

We found out in the morning, she was just up late working on getting that darn belly button to fall off. Hip hip hooray!

The next morning, we woke to see the forecast of rain was, actually, correct. It POURED during the entire event. Luckily we were under a great big tent so we stayed dry for most of it. They decided to go ahead with the stroll even with the rain, but shortened it from three to one mile. Ryan, Leah and Damon braved the wet skies while Michelle, Brixton, Kate and I stayed under cover.
 Damon was probably Leah's biggest supporter. He stayed up late the night before making this awesome sign for Leah and he carried it around during the entire event. I've never been more proud to proclaim - with shirts and signs - that We are Team Leah. 
We filled ourselves with hot dogs and ice cream and had a great time. Ryan's favorite part was by far the tanker-truck turned grill. This thing was awesome, so I obviously promised him one for graduation.

We chatted with some friends we've met mostly online and were introduced to some new ones. The event was ridiculously successful, raising more than $100,000 to fund research to find treatments and a cure. Jennifer and Justin Endres deserve countless pats on the back for pulling off an event of this caliber for the 7th year in a row. 

We stopped for some local chowdah before heading home in one of the worst rain storms I've ever driven in. Again, our two amazing passengers didn't seem to mind.

It's always overwhelming to me to walk into a room where everyone is there because they know and love someone with Rett syndrome. A room where everyone knows the ups and downs, the highs and lows, the goods {???} and bads of what has been our life the last three years. I often get overwhelmed with how different Leah's life is from what I initially anticipated. And then I get equally overwhelmed in a completely different way when I realize there are individuals who dedicate their lives to finding treatments and hopefully a cure for my little Leah and so many others like her. I chatted with parents, care givers, nurses, siblings, therapists, doctors, clinical employees and more. The Chief Scientific Officer of the IRSF nonchalantly wandered up to me and we chatted for a good 20 minutes about Leah and various trials for medications and treatments that are currently in process. It's just amazing. 

It's a room I never planned to walk into, but it's filled with people I am ever so grateful to have met.


Kelli Marshall said...

so fun! i wanna see cape cod one day! and do you like your stroller? i must see it.. looks fun!

Erica said...

isnt dr kaminsky awesome!? and ps: you look silly good!!

Colleen said...

um, did you just have a baby? you sure don't look like you did. you look great! i have the same little striped dress in blue for olivia : )