Tuesday, January 3, 2017

Fairy Tales

The thing that I love about fairy tales is that even though you know they are not real, you cannot help but smile and think about how amazing that type of reality could be.  Just close your eyes and envision marrying your true love, having an even amount of boy and girl children, never having any health or family crises, living in the perfect house, and just ultimately having the perfect life.  The thing I dislike about fairy tales is that they are not real and no matter what happens in someone's life it will never play out with only the benefits of a fairy tale life, think of "the Truman Show".  However, the fantasy idea of happily ever after in all aspects of life is still something to be desired.

Sonzee's diagnosis of CDKL5 and the reality of how strongly she is affected by her mutation, typically leaves me with less of an emphasis on real hope and more of a dreamers, on a good day mentality.  If I have too much hope it tends to be more depressing and challenging for me to deal with it all, especially when I see how children with CDKL5 mutations excel in areas I honestly don't even dream about because those are even too far from our reality to fathom.  There are moments and sometimes-even days where she responds better to the challenges and those are the days when the possibilities of a fairy tale life creep into my vision and almost seem tangible.  Then like a puff of smoke, the fairy tale disappears.


I am trying to not be sucked into the "Debbie downer" mentality, but day after day of physical and emotional difficulties eventually take its toll.  I sometimes imagine that Sonzee will not fall victim to the typical impact of having a CDKL5 mutation.  Maybe she will remain seizure free forever, or she will eat by mouth and be free of tubing.  Maybe she will one day sit on her own, crawl, or even walk.  Maybe I will fall asleep at night and not wake up in a panic that she was the newest victim of SUDEP (sudden unexplained death of epilepsy).  Maybe we will just be a typical family of six where our biggest challenges are how to juggle four children's after school activities.  Maybe...POOF...our life will not ever be a legitimate fairy tale, but I guess it does not even matter because it is all about the story.

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