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the adventures of a MAD mom

Tag Archives: Kids Speak Up

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We are back from a very exciting trip to Washington D.C.  It was one of those trips that neither of us will ever forget.  Where to begin?

After much discussion we made the decision to stay at the hotel where the conferences were taking place, even though they would not accommodate us in any way other than providing a small refridgerator.  This meant no microwave or other means by which to heat Casey’s food.  The decision to stay there despite this  was based upon having Casey as included in the group as possible, making it easy to join last minute and after hour activities.  Although I was very puzzled by the choice of hotels unwilling to make accommodations during an epilepsy conference, the idea that Casey would be fully included in the group swayed us to stay.

As is the case with every trip now, I began to bake and cook about a week before.  Casey and I reviewed old recipes and new to come up with items that did not require heating.  We used our pizza dough recipe to make garlic crackers for paring with salame.  I baked batches of muffins in assorted flavors. My husband shrink wrapped bacon in individual servings.   I reviewed the D.C. Metro links to the local Trader Joes and Whole Foods in relation to our hotel.  Due to the impending air traffic controller furloughs, we made sure to have a whole day worth of meals with us prior to boarding the plane – just in case.   With little delay, we arrived in D.C. in the evening just in time for dinner.  A restaurant just across the street from the hotel was able to accommodate Casey’s MAD needs.

I woke early the next morning to navigate the metro.  Two hours and many transfers later I was back at the hotel with all the food items we would need for the week  (this 1/2 hour trip turned major outing due to maintainance on 2 of the metro lines that I had not factored into my commute).

We were able to get a little sightseeing in before the Kids Speak Up Orientation began later that day.  There were over 40 teens from across the U.S. who were able to meet each other and learn a little about each other.  Smartly, the organizers separated the teens from their parents, and they together shared their experience battling Epilepsy.  As you might expect, they became fast friends.  We parents were also able to share our experiences with each other in an environment that only those of us living with this can understand.

The following day was spent preparing for our trip to Capitol Hill.  We were fortunate to have many past attendees as well as interesting guest speakers to help guide us in our mission. We learned a lot about the political process and pending legislation that will, if passed, benefit those living with Epilepsy along with many other diseases and disorders.

Finally, it was time to visit Capitol Hill.  Our group visited our California Senator’s offices together.  Each teen spoke a little about living with Epilepsy and the impact on their lives.  It was very powerful to hear each of their stories and struggles.  We then separated to visit our personal representatives in the House.  In all of the meetings, the representatives were very supportive of the teens and their mission.  They encouraged the teens to continue to advocate for themselves and others,  and to take part in the political process throughout their lifetime.  I think it made a big impact on the all the teens and their families.  I know it did for me.

A huge Thank You to the Epilepsy Foundation for hosting and planning this event that will have such a great impact on all those living with Epilepsy.  It was really a life changing experience.

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