October 09, 2012

SWAN by any other name...

'Tis but thy name that is my enemy;
Thou art thyself, though not a Montague.
What's Montague? it is nor hand, nor foot,
Nor arm, nor face, nor any other part
Belonging to a man. O, be some other name!
What's in a name? that which we call a rose
By any other name would smell as sweet

My 9th grade English teacher would be so proud of me right now.  I actually remembered something from Shakespeare.  I couldn't remember it then, but I can remember it now.  Go figure.  LOL

SWAN stands for Syndrome Without A Name.  This is Sadie.  She is my SWAN.  She has many diagnoses, but none of them add up to just one overall syndrome.

This use to really bother me.  Not so much because there is no name, but because I wanted a road map of what her life might be like.  What I could expect next.  I wanted to know what I should be looking for.  However, as time has gone on, I've realized that she is her own little person that has yet to match up 100% to any of the diagnoses that she has been given.  So even if the medical world did give me an actual syndrome name for her, would she actual match up to it?  I doubt it.  So would I have a road map for her, no.  So I stopped obsessing about finding a name.  It was a waste of my time and brain power. And now when people ask, I say she has what they call the Sadie Syndrome.  Some people get it, some people don't.  Some people actually say "wow, how ironic is it that her name is the same as her syndrome."  I just smile and nod and say "i know, weird".

So would my SWAN by any other name be as sweet?  Most definitely!  For now I am fine with her being my beautiful, perfect SWAN!



 

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