Words to Parents

After reading endless stories of how injuries during normal childhood have followed those with EDS, I am now more appreciative of my mother’s over protection. One of the things I’ve seen with EDS is that once you start having surgeries for issues, you don’t stop. It becomes surgery after surgery. There are many people who are younger than me and who can’t walk. Had my mom let me do all of the things I wanted to do, I would likely not be able to function as well as I do.

My words to parents of a child with EDS: Find an appropriate balance of fun and safety. Be protective, but not overbearing. Don’t let them get away with things because of their condition; instead instill a non-conditional focus on respect and grace. They may go through phases of hating you and acting out, but it is your dedication to them and their success that will stay with them when they’re on their own trying to make sense of the world. Keep at it, and know that your love makes a huge difference.

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