Digging DC

kids in DC

cake in DC

We landed in DC on Friday night and have packed a ton into the weekend. There’s so much to do here! Yesterday, we saw many of the National Monuments – Washington monument, Lincoln Memorial, WWII, Korean War and Vitenam memorial, the White House. We must have walked 10 miles up and own the mall these two days – taking in the Musems of American History, Natural History, Air and Space – Chinatown Being from California, it’s impossible not feel excitement at being here in person – to look up the mall and see the Capitol Building, the place of history, the hub of government.

I am so grateful for how well Caitlin has done these two days. It was right after our trip to summit in 2007 that we learned how permanent and devastating the damage to her hips was. She had been in so much pain that trip – sitting for the flight home was unbearable. Though she certainly needs plenty of breaks to sit and rest, she really has done well this time around. At once, it reminds me not only how far we have come, but how far we have to go.

Perfect timing as we switch gears for the business and purpose of our trip…. It feels a bit like a family reunion as people are checking in to the Summit – even though I never have met most of the attendees! Our common experience and goals unite us… and I feel a connection and excitement as I meet the advocates attending from 46 states!! On Saturday night, I met S and E from Nevada… and learned of their need to travel five hours just to see a pediatric rheumatologist. Appts are only available one full day and two half days a week… so each visit means a day off work for mom, a day off for E, gas money, hotel money… driving through a mountain pass routinely snowed in during winter…. such an achingly familiar story. I’m already being inspired again and again!

Cant wait to meet more people and get to work! Things kick off tonight…..

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