My First Osteogenesis Imperfecta Conference in Washington DC

In Features, Mind, Body & Spirit, Pushing Forward by Sofia Brenes

Since I lived only 4 hours away from our nation’s capital, my parents were able to drive me there. I was so excited about going and counting down the days till Friday, when I would arrive. I was going to share a room with Nathasha, Claudia, and Tess. I’d talked to them online and couldn’t wait to meet them in person.

I slept in the car most of the way

there and when I pulled up to the front of the hotel, I started getting nervous. I wanted to fit in with my roommates and the rest of the O.I. conference veterans. As we walked up to the registration desk, I was astounded by the amount of O.I. people in the lobby. I have never seen so many people with my condition in one place at one time!

My roommates were so welcoming and hilarious with their jokes and witty comments. I knew that we were all going to get along very well. One of them mentioned on the spur of the moment that we should take the metro (subway) to go sightseeing around Washington D.C.

The last time I took a train I was still in a stroller and could hardly remember the experience. It was so exhilarating to be traveling around in a subway and not a car or bus for a change.

In our group of six, we traveled to the White House and the Smithsonian Museum. It was scorching hot outside but we had so many laughs on the way there. As Nathasha Alvarez said at one point, “We’re divas we don’t sweat, we glow.” I was glowing a lot that day let me tell you, but it was one of those memories that I’ll always cherish. I was glad to have gotten to know other people with OI better, while enjoying the beautiful landmarks around Washington D.C.

We headed to the hotel bar later that night and I felt like all four of us were the O.I. version of “Sex in the City.” We were going to order a round of Cosmopolitans for everyone but decided to go with Mojitos, Melon Breezes and other delicious drinks that should have make our own version that much tastier!

I have tons of girlfriends back home but it was awesome to connect on another level with girls who have been through very similar experiences as me. We had a blast that night drinking, eating, talking to other friends around us. It was the first time in I don’t know how long that I felt truly comfortable to be who I am. I didn’t have those gnawing thoughts of competition and measuring up as I did when I was around able-bodied girls. I was able to let go of my inhibitions and have fun.

On Saturday I spent most of the day introducing myself to new people and making new friends. I enjoyed hearing the diversity in each of their life stories. We all came from different backgrounds and situations but had a common understanding of what it was like to grow up with O.I. I felt a sense of relief telling them about myself and hearing them say, “Oh I know what that’s like.” The level of insight I reached with my fellow O.I. friends was more profound than with my able-bodied friends.

The entertainment for Saturday night was the talent show and the adult dance. My roomies and I got all gussied up in our beautiful dresses for the events. The talent show was so amazing to see. Who knew O.I. people could turn out to be such good singers and dancers?

The dance was what I was truly looking forward to that evening. I love dancing at clubs, so the adults’ dance was right up my alley. My friends and I danced for hours there to a mix of old and new school songs. In the two hours I was there I only stopped for 2 minutes to take a sip of water. I was shaking it to hip-hop here, dancing the Macarena there. I took more pictures than I can count to capture the fun memories of the dance. A funny thing Nathasha mentioned, which I found to be so true. She said that people with O.I. will dance with any part of their body that they can move. If we can only move our toes, we’d be wiggling them like crazy. We all shook what our mamas gave us!

I enjoyed the late night talks I engaged in with my roommates. Sharing bits of our lives really taught me a lot of how to approach different situations. They were all a little older than I was and the words of wisdom they shared I can now apply to my life. They knew where I was coming from and it made it that much easier to open up to them. They are all remarkable women and I admire them. I hope that one day I can inspire someone as they have me.

On Sunday afternoon I had to leave the hotel and take the tedious four hour drive back home. I wish I would’ve have stayed until Monday like everyone else. I bonded so well with them that I didn’t want to leave but my dad had to get back to work.

I’ve made lifelong friends with the most incredible and brave individuals I ever met. I hope to keep in touch with them and reunite with them in the next conference. I took a new perspective home with me. The feeling that you are not alone and that plenty of others you’ve met are going through the same trials in life is a comforting feeling. I’m grateful that I took the initiative to go to my first O.I. conference. It is only the beginning.
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