Moebius Syndrome

Aloneness

Today in a conversation, one of my friends who is the mom of a child with Moebius syndrome pointed out that if it wasn’t for being friends with me, her son would go two years between conferences not seeing anyone with Moebius with any sort of regularity. For some reason, that comment struck me today. Maybe because I realize how important others with Moebius have been to me throughout my life, or how invaluable real, actual meeting people is. I’m a techie, but give me a real, sit-down conversation and it can be life-changing. So I’m happy that just by being myself and living my life the best way I know how, I can be helpful to families trying to find their way in the world with Moebius syndrome.

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