Tag Archives: awareness day

Aware

I’m aware. I can say that.

I’m aware that I’m just not into the whole awareness thing right now.

I’m aware that there are immediate things that I just care about more now.

I’m aware that I drastically cut down my online presence and it’s done wonders for me.

I’m aware that this is perhaps avoidance but I just don’t care.

I’m aware that I am smarter about things, about trusting people, about what I share.

I’m aware that I’ve found a goal to work towards that motivates me in new and exciting ways (more about that soon).

I’m aware that people really don’t know me, don’t really understand me, are probably judging me.

I’m aware that they do not define me.

I’m aware that I control more than I think.

I’m aware that I am both defined and not defined by what has happened to me.

I’m aware of it all, soaking it in, living with it.

I’m aware.

With (Not For) #MSAD16

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So besides the awesome Northern California get-together (70 people, 15-20ish(?) with Moebius syndrome, this post/Tweet that I put out there this morning pretty much sums up how I want to reframe advocacy, awareness and acceptance in the community.

So many people posted such well-meaning things saying they were smiling “for” their loved one with Moebius. I have a slightly adverse reaction to this… I want to be a participant in this. I don’t want things done for me. So… do this with us. Smile with us, especially when our smiles are different. Embrace that difference; collaborate on things that will highlight the uniqueness of everyone and most importantly…that there are many ways to express yourself

for more information on Moebius syndrome, check out moebiussyndrome.org.

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Semi-Wordless Wednesday: World Clubfoot Day

  

Today I woke up, and my feet hurt. They pretty much always ache, to some degree. I had an ever-so-helpful (not) orthopedist tell me about 10 years ago that the surgery used to correct my clubfoot was “outdated”… yeah, not much we can do about that now! Basically, instead of using casts to nudge my foot in the right direction they did something with my tendons… which left my foot and leg a bit screwed up.

For me, the constant ache and fatigue of my legs is one of the most debilitating parts of how Moebius syndrome affects me now and has the most impact on how I feel. It’s hard to be positive and enthusiastic about life when you’re in pain. It’s hard to work when it hurts to stand up, much less walk. 

I pop a few Tylenol Alleve and suck it up, that’s the only thing I know how to do.

Moebius Syndrome Awareness Day

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I think that the best sort of awareness is spread quite unintentionally, just by living my life and sharing with people who know me and want to know my story.

Every once in awhile, though, a big awareness day thingy makes me happy to be part of this community. It’s amazing how diverse and varied we all are, brought together by chance and through social media.

For more information on Moebius syndrome and MSAD, see http://is.gd/WhatIsMoebius and http://is.gd/MSAD2014.