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My Trip to Washington

My Trip to Washington

Many years ago I was one of 44 kids who were selected from around the country to participate in the Epilepsy Foundation’s "Kids Speak Up" program. The event took place on a spring day in Washington, D.C.
As I remember... My parents and I arrived at the hotel on Monday afternoon and registered for the conference. We had dinner and a chance to meet other kids with epilepsy. We met Mike Simmel of the Harlem Wizards. He is a professional basketball player who has epilepsy. There was a caricaturist who drew pictures of us doing our favorite activity. Mike showed me how to play tennis and later in the day we were running on a treadmill. In fact that was the moment I got to like running and treadmills, and it's interesting that today I still run on a treadmill but it's a different model Sole f63. There were a few other speakers and they told us how important it was that we spread our message of what it is like to have epilepsy. The next day we had breakfast and listened to a talk by Congressman Steny Hoyer. He is from Maryland’s 5th district and a real advocate for people with epilepsy. He told us he was working on a reauthorization of the Americans with Disabilities Act (ADA). The Supreme Court doesn’t believe that the ADA should protect people with epilepsy. He believes it should and is working toward a solution. The people from the Epilepsy Foundation spoke a little about what we were going to be doing on Wednesday when we visited our congressmen and senators.

My dad and I got to go have some fun, but my mom stayed at the hotel and attended "lobby school." We got on a bus and toured the US Capitol. Our guides were staff members of Senator John Rockefeller of West Virginia. We learned a lot of history in the Capitol tour. We went to the rotunda, the old House chamber, the old Supreme Court chamber and the crypt underneath the rotunda. I liked the crypt because it has lots of exhibits about the Capitol and its history. I even got my picture taken at the center of the crypt which is the geographical center of Washington DC.

We ate lunch in the Dirksen Senate Office Building. We got back to the hotel and then split up at tables by state. The staff told us again about how to deliver our message to the congressmen and senators. They gave us our schedules for meeting with everyone. We rehearsed what we were going to say and how we would say it. Some families had staff members going with them but we thought we could do it on our own. I went back to our room and changed to go swimming. We went out to a restaurant for dinner and practiced our presentation.

Wednesday was our big day. It started off with breakfast and then we had another speaker. I couldn’t believe I actually got to talk with him beforehand. His name is Tony Coelho. He is a former congressman from California and he was the main author of the Americans with Disabilities Act. He is the incoming chairman of the Epilepsy Foundation. He developed epilepsy at 15 because of a car accident. His life hasn’t been easy because of his epilepsy. He told us about his struggles and his commitment to helping others. He is awesome. He told us that we need to share our stories because you never know what changes you are making with the people you are meeting. It was a great sendoff.

We headed to the Metro station and off to "The Hill." We had three scheduled appointments. We started off at Senator Bond’s office. We met with Anne O’Toole, legislative correspondent for the senator. We sat on a couch in the main office and my parents told her why we were there. I didn’t say much at first because I was a little scared. My mom asked me questions and I got more comfortable telling about my life. My parents talked about what happened when I was really little and developed infantile spasms. My mom told about how sick I was and all the physical, occupational and speech/language therapy I have had in my life. I talked about how hard it is sometimes. I told about challenges I face everyday at home and at school. My dad talked about the additional funding that is needed to support advocacy and research. Ms. O’Toole was very kind and asked me a few questions. I got to have my picture taken with her standing in front of the state seal at the office door. We gave her a packet of information about epilepsy and went off to our other two appointments.

We met with Faith Cristol, legislative counsel to Senator Jim Talent. She told us that the senator was sorry he couldn’t meet with us personally but he had to go and vote. We sat in the outside office and I told her my story. The office was crowded with other people, and it was kind of distracting but I kept talking. I wasn’t as nervous this time because I had just done this. She asked us some questions and then we were done. None of these people can spend a lot of time with you because they are very busy. We gave her the packet, and she offered us some soda and candy as we were leaving. I asked if we could take a picture together in front of the flags flanking the front office door. She was very nice about it.

We ended our meetings by going to Congressman Todd Akin’s office. We met with Lauren Ellis, his legislative assistant. She met with us in the outer office. We told our story again. She asked us the most questions. She seemed to really care about learning about the issue of epilepsy. I got to go into the congressman’s office with her. We had a photograph taken standing in front of the flags near his desk. We left our last packet and we were done.

We went back to the hotel and waited around a while to go to the airport to catch the flight back to St. Louis. I slept on the plane, because we got back late and I had to get up for school the next day. Oh what a nice life that has been...
04/22/2013 16:09:22
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