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Intern Update – Hemispherectomy Family Reunion

July 24, 2009

Hello everyone! This is Anna, the other intern. The Positive Exposure team just got back from the AMC conference, and Rick will be off again this weekend—the action never stops!—but I wanted to take a minute and reflect back on the Hemispherectomy Reunion, the first conference that I attended with PE, which was held in Baltimore two weeks ago.

The conference was very kid-oriented, since hemispherectomies (surgeries to remove half of the brain, usually in treatment of seizure disorders) are relatively new, and performed mainly on young children. Some of my favorite moments happened while watching or playing with little ones in the hallways—peek-a-boo in cabinets, comparing of Spiderman leg braces, and lots of gorgeous smiles!

The older kids could be found shooting hoops outside, leading discussion groups, or catching up with friends from past reunions. The “hemi” young adults that we met are pursuing all sorts of interests, from carpentry to speech pathology to clowning, and it is clear that many of them are important role models for the younger kids and their families. Open communication seems to be a theme of this community (a community that includes a number of physicians, it might be added). It was wonderful to see this modeled by the many parents who sought out the perspectives and advice of the young adults.

The emotional high of the weekend came on Saturday, when everyone rallied for a talent show. Singing, joke telling, and a stunning dance performance were accompanied by a slide-show of photos that Rick had taken the day before. There was, needless to say, lots of applause and shining eyes.

In my own experience as a participant at conferences like this one, it’s always been about information sharing and support—support for the physical and social challenges of living with a particular medical condition. This was true at the hemispherectomy reunion, but helping Kim conduct interviews gave me a new appreciation for what lies in and beyond all the challenge talk. There is a wealth of down-to-earth wisdom in communities liked this one. The word “resilience” came up a lot, and a number of people made comments such as “Life can be challenging and unexpected, for sure, but who’s to say what life ‘should’ have been?”

What a great weekend! (and brilliantly organized). It was an honor to hear everyone’s stories. I can’t wait to see where we go from here, as we continue to develop the video work, along with Rick’s photography, and find new ways of getting all this beauty out into the world.

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One comment

  1. Hi … I am very interested in your organization … my son had a hemispherectomy in 2001 … he is currently featured in the Chicago Museum of Science & Industry … will you contact me??? Thank you so much!



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