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Wednesday, August 20, 2014


When I was a very small girl we had a firefighter come into our....oh I don't know...second grade class?  I can't even remember, but we were taught all about fire safety and how to escape and how we should have a plan to get out and not die if our house was engulfed in flames.  After all that merriment, we were asked to draw a picture of how to survive a fire and my drawing won a prize and got hung in the local Long John Silvers.  (And I never saw the prize.  It was cash.  No wonder.  A better prize would have been a certificate for therapy after all that, right?)

From that day on, I was very aware of the reality of house fires.  I actually had a little bag I packed with all my most important possessions and at the tender at of like....eight...I remember sitting on my bed contemplating packing my favorite stuffed dog because I really just wanted to sleep with it as I always had, but then....what if there was a FIRE....and I left it behind.....I did put that stuffed dog in that bag the first couple of nights it hung on my door and I slept terribly.

But I was aware.

Then when I was about 11, I read this horrible article about how many animals were put to death in our local animal shelter and the picture in the paper showed an employee placing dead animal bodies (wrapped up) into the incinerator.  I sat down with pen and paper and wrote a strongly worded letter to the was published and thus began a years long obsession with everything animal.  Spay and neuter people!! (That was a directive about PEOPLE spaying and neutering, you know...their animals...not themselves, although that isn't always a bad idea, but I digress...) Until I left home I would deliver my left over newspaper to the animal shelter because it was something I could actually DO.

Fast forward a few years and I had made myself aware of all kinds of travesties, tragedies and horrors. Hurricane Katrina had me in my shower bawling until I couldn't breathe, with thoughts of loading up my entire van with bottled water and granola bars....even though I couldn't get to the people who needed them.  I've organized drives for cloth diapers, sent money for rare diseases, and prayed for everything big and small that has crossed my path.  I am an empath and  it's both blessing and curse

So when the ALS "Ice Bucket Challenge" started invading my newsfeed, I thought "Wow...everyone knows what this is?  Why don't I?"  And I admitted it.  (I know the PC thing to do is just do the challenge and pretend like you know what it is but I doubt the point of an awareness campaign is pride of self.  Just saying) I had a couple people who were like "Really you didn't know...I had a friend...or this person.." and I get that.  If you know someone who's gone through something I imagine seeing an awareness campaign dedicated to that cause is both healing and empowering.  But I'd like to offer a flip side of that coin...

Do you know what scheuermann's kyphosis is?  How about Thanatophoroic Dysplasia?  I'm sure you've heard of Lupus, but you probably don't know much about how it affects daily life unless you actually KNOW someone who has it.  Hashimoto's?  SPD?

No?  These are the things that have affected the people in my immediate family.  One was deadly and took the life of my infant son and the others just all around suck and cause limitations on quality of life.

When you say these things out like, the normal human reaction is..."Well at least..."

Think about it.  We all do this.  We assign levels of how terrible something is, and thereby judge other people  With every breath we take, with every word we utter about an illness, disease or condition, we tend to compare it with something else, declaring one a winner for the "worst thing ever.."

I know the world wants me to be aware.  I am.  I always have been.  I always will be.  I'm most keenly aware of the fact that I know next to nothing about most of the things that people, all people, are suffering with on a daily basis.  There simply isn't enough room in the human mind, or human heart, to digest and process every single sad thing that exists. I believe that the circle God has given me is the one he wants ME to attend to.  The people who are struggling in MY LIFE with the things THEY have to deal with.  I am aware of my humanity and my limitations and having accepted that I can't care about every single worthwhile thing there is to care about, I feel MORE empowered to do something with what I do know.

I use all of my energy, time, love and some money to do the things I have personally been called to do.  I am aware and involved.  Active and passionate.  Awareness is good, Aweariness is not.  It's up to each individual to find their cause, their mission and their path.  Fortunately, ALS was not in my circle inner, or outer.  That's why I had no idea what was going on.  But that's okay because I WAS made aware.  I did look it up.  I did take a moment to really internalize what that must be like, not only as the person suffering, but the people watching it happen.  I said a prayer, made note to pray again and then I clicked off the page and got back to the mission I'm on....working for Cuddle Cots, which is MY circle, my passion and my path.  My baby died.  Yours didn't  I wouldn't expect anyone who didn't experience this particular thing to spend their days or nights working with the same intensity I am.  Because that's not their path ;)

And as far as the ice-bucket challenge, well, I was TOTALLY up for it, but know....I'm holding a tiny infant most of the time.....I'm opting out.  I think money was the point anyways and that....I can do ;)