Blog

Since people with Moebius syndrome’s mouths are different, we have certain challenges with drinking and eating. I’m not able to use a metal straw well because I can’t pucker and my facial muscles are underdeveloped so I can’t suck that well. Using plastic straws just works better because I can bite down on them, and… Continue reading Eating and Drinking with Moebius Syndrome

“What happened to your hand?” Nothing “happened” to my hand. I wish you wouldn’t ask it like that. When you ask me what “happened” to my hand, it makes me feel small. Embarrassed. Ashamed. Rejected. Uncomfortable. Deficient. Closed. “How would you prefer I ask you about your hand, if I’m curious?” It’s all about your… Continue reading What *Happened* to Your Hand?

January 24th is Moebius Syndrome Awareness Day! I was reflecting on what a smile is, and I wrote this piece…. “So, you were born with facial paralysis. So, you can’t smile?” “I *can* smile.” “What do you mean? Your face can’t move.” “Yes, I know. But I can still let you know I’m smiling.” “Look… Continue reading What *is* a Smile?

I just watched a special about the late actor Rob Reiner. Something that stood out to me and hit home was someone said that at the heart of his writing and filmmaking was the dialogue between the characters. How important perspective taking was to him. That’s so true. That’s something I write about too, to… Continue reading The Importance of Perspective Taking

On March 29, 1986, a beautiful baby girl was born. Although some people (even she, herself) did not see her as beautiful. They saw her differences as ugly and shameful (even she did). She grew up believing because of her differences she was unworthy of love, that people would not love her because she was… Continue reading I am Worthy of Being Loved