Tuesday, November 18, 2014


As the irony of life would have it, Gianna's favorite activity is gymnastics.  GYMNASTICS.....the sport that requires balance, graceful movements and physical strength.  Not Gianna's strong points to say the very least!!  But there's an awesome Little Gym near us where she takes a preschool gymnastics class and it is literally her motivation and the hi-light of every week.  She loves everything about it - the teachers, the music (if a song she likes comes on, she'll stop in the middle of everything and scream "THAT'S MY SONG!!!!" - so excited), playing with the other kids, and (of course) the outfits.  She tries everything with more or less success, gets a ton of extra help from the sweet teachers, and falls....falls a Lot.  But in typical Gianna fashion, she figures out a way to get back up and get back to it over and over again.  

The parents all sit outside the gym and watch through a window.  So a couple of weeks ago, the mother of another girl in the class turns to me and says, "Is your daughter really clumsy?"

What I wanted to say:  "Well, I suppose it may look that way but maybe you didn't know that my daughter was born with an encephalocele and had her first brain surgery at 4 days old which removed part of her occipital lobe which controls balance.  She also has hydrocephalus, agenesis of the corpus callosum, hypotonia, apraxia, syringomyelia and very poor vision.  If you don't know what any of that means, I'd be happy to explain it.  But the short version is that we feel blessed and lucky that she is alive, walking, talking and enjoying this class!!"

What I actually said:  "Umm...yeah I guess so." (weak smile)

And then I immediately felt really bad about it afterwards.  Did I miss an opportunity to educate and advocate?  Shouldn't I have "stood up" for Gianna and explained why her physical performance wasn't due to just being "clumsy"?  Didn't this mom maybe need to gain a little sensitivity to children with disabilities? So why didn't I say anything?!?!?  Well, for one thing, the room with 20-25 parents in it was totally silent - every parent in that room would have heard me (just like they heard her question).  And I was hesitant to possibly embarrass her in front of all those people.  And I didn't really feel like going into the whole thing with this rude mom who I have never met or spoken to before.  And I really just wanted to continue to sit and enjoy watching my daughter having fun without having to explain anything to anyone....

And sometimes that's just life - the struggle between what we really WANT to say and what we feel is acceptable at the time and situation.  The struggle between wanting people to understand our children's special circumstances and needs, and just wanting our child to fit in instead of always standing out.  Maybe if I had it to do over I would say something different.  Maybe next time I'll think of just-the-right-thing to say.  Who knows.  But one thing's for sure - Gianna wasn't the most clumsy person in the room that night.  

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