For Cerabonas, a great start to Family Advocacy Day 2013

We arrived in Washington DC Tuesday evening and got through early registration for Family Advocacy Day.

The kids were given some fun DC goodies in backpacks and all have shirts that say ‘All Stars’. One of the coolest gifts in the backpack was Riley’s trading cards that have her photo and bio on them. She will leave these with Maine’s congressional delegation and, like the other children here, has also been exchanging them with other kids.

We got an early start this morning with breakfast in the hotel and met the two other families representing Boston Children’s Hospital. We were then off for a trip to the Lincoln Memorial and then the National Air and Space Museum.

We took some time to walk down to the Vietnam war memorial–what a powerful sight and tribute to those who lost their lives. We came back to the hotel for lunch and a kid friendly congressional debriefing featuring an old school School House Rock video and a ton of other great kid friendly visuals. A great takeaway for us about our meetings with the elected
officials tomorrow was to not be nervous because, as our speaker kept reminding us, “they work for you.”

Our family was asked to play ourselves in a role play with a “member of congress” (played actress Sarah Wayne Callie from The Walking Dead and Prison Break) in front of the other families attending FAD; I was so nervous! Even though we had practiced this already….it is quite a challenge to concisely explain Riley’s 10 years of complex medical history in just a few minutes. We did our best, and it was great, we got really good feedback from the other families and children at the event. It definitely feels good to have more practice under our belts for our meetings with Senators Susan Collins and Angus King and Congresswoman Chellie Pingree.

I loved hearing from Max’s (the Darth Vader from the Audi superbowl commercial) mom, whose speech brought tears to my eyes. She spoke about the importance of siblings, and the importance of hope and optimism and of being with other parents who get what it’s like to raise children with complex medical issues. These points absolutely resonated with me!

For our down time, we walked to the White House and came back for a swim. We’re all cleaned up now and ready to party!!!

~ Kristen (Riley’s mom)

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