By: Kelsey


-I hate sharing these stories because I hate calling attention to my differences when I really just want to blend in but alas, I can not do that. I have always said that I would use my life experiences, both negative and positive, to try and make an impact.

I am currently at Starbucks working on replying to emails and preparing for the MSF board meeting tonight (as part of which I am trying to be a voice for those with Moebius syndrome so that these instances don’t happen to them). This kid and his mom (I assume) came in and sat down at the table beside me. The kid kept staring and I started to feel my face getting warm because I knew what was coming. Does anyone else with Moebius get the anxiety-warmth or is it just me?

Anywho, he keeps staring and then goes “you look weird? Why does she look weird?” The mom said something in Spanish so he didn’t say anything more but just went on staring. Okay, I do have to admit that I am a bit at fault here. I have NOT mastered the confrontation when people say stupid things like that because really all I want to do is tell them to to jump off a cliff which isn’t productive nor a teachable moment. So I don’t say anything. I stay silent and I just sit back and take it and THEN I end up having to tell everyone that I didn’t say anything, yet again. Yes, I do take responsibility. BUT ALSO, parents should maybe TEACH their kids about differences. This is the point of my post. Please teach your kids that there are others in the world around you that look different. They look different but they don’t deserve to be treated different. We are made of the same things, we all want to feel like we belong and really, we are all different in some way. Some differences are just more visible.

Like my friend Penny said on our episode of You Can’t Ask That, I am NOT your child’s teachable moment. It is NOT my job to make sure that they don’t say stupid/mean things to others. I do what I can to educate (like when I spoke at the school for Moebius awareness day) but it’s your job to instil kindness and acceptance. At the very least please tell them it’s not acceptable to ask people why they look weird. Yes I should have spoken up but honestly, I shouldn’t have had to.


AND I was wearing my Positive Exposure hoodie. Change how you see, see how you change. People need to learn this

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