Monday, October 26, 2015

Does she know?

I will admit that just about every week on either Friday night or Saturday morning I open a tabloid magazine and read it from cover to cover.  Do not judge me; I consider that being a good wife because my husband owns magazine websites.  I consider this my "mindless" time and enjoy living vicariously through the celebrities lives that are mentioned.  The most intriguing page to me is the one that has the little blue birthday box.  There is a list of celebrity names, birthdays, and age they are turning.  I usually have mixed feelings of envy and disbelief.  Envy because of what my life could have looked like, had I modeled, acted, or became famous; utter disbelief that those little kids on the Disney channel are about my age or just a few years younger.  I cannot imagine I am the only person who lets her thoughts drift off to imagine a life of "what ifs".  Oh, to be able to bathe in money, to fly on a personal jet, to have a billion followers of Sonya's Story, my list could go on.  These thoughts lead me to my recent internal dialogue regarding Sonzee.  I wonder as she gets older will she wonder what her life would be like if she did not have a mutation on her CDKL5 gene?

People have told me "she won't know any different", but is that true?  Will she look at her siblings and see all they can do and wish her body could do the same movements?  Will it make her angry because she cannot move her muscles the way she wants, or say the words aloud that she is thinking in her mind?  Will she even be aware of all the battles set before her?  Is it that she will be trapped, locked in her own mind, unable to get her message across because her brain has difficulty communicating with all the parts of her body?  Rather, will she just be content because "she doesn't know any better?"  I wish I knew what really goes on in that pretty little head of hers.  I cannot really figure out which I would prefer for her.  Would it be better for her that she knows she is struggling or not even have a clue about the parts of life she is missing?  I truthfully cannot figure out which would be worse.

I try to put myself in her body.  How frustrating I would find it to have absolutely no control.  To be screaming in my mind all my thoughts, but not being able to let others know what they are.  To want to move my body but unsure how to communicate to my brain which limb I want to move and to where.  Those examples suffocate me to the core.  I can only compare that to being buried alive, screaming for someone to take the dirt off my body, but no one being able to hear me.  On the other hand, if I had limited to no thoughts going through my mind and I just stared out watching "life pass by" I suppose I would be content.  From my point of view as a parent that would make me sad.  If it were Sonzee though, would it make her sad, or would it really be that because she does now know differently, she is just satisfied?    


Am I unbiased when it comes to my feelings either way?  Am I considering her potential struggles frustrating, and her potential indifference to be "sad" only because I know differently?  Is the main reason we "feel badly" for others simply that our personal experiences tell us someone else's situations are less than, worse, or, different from ours?  All of my thoughts lead me full circle back to my original thought, will Sonya know she is any different?  If she does know, will she even care?  I guess the bigger question for me is if she does not care, should I?




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