Wednesday, December 9, 2015


On a busy week when Sonzee has movement lessons multiple times, I can spend upwards of 3-4 hours in the car a day.  It equals approximately 150 miles of driving and 2.5 times of "Frozen" for Sonzee's older sister.  She would watch it every day if I let her, but I save the movie viewing for our crazier/longer distance days.  For 1.5 times that the movie is playing everyone is asleep and so I am left to sing and act out the scenes all alone.  

My favorite character hands down is Olaf.  I absolutely love everything about him.  To start, what a great personality this little ball of snow has.  No matter how many times I listen to him, I always chuckle with his words (I know that is more credit to the writer, but stay with me here).  He is such a happy snowman and a genuinely grateful character.  He has great character attributes such as resilience, persistence, humor, and friendliness.  I think what resonates with me the most about him is how much he fantasizes and wishes to be part of something that he has never experienced, yet can only imagine in his dreams what that reality would be

As I sit in the car last night at a family Chanukah event because Sonzee was finally waking up from a seizure she experienced 3 and half hours prior, and she wanted to eat, my mind drifted off to thinking about Olaf.  "Sometimes I like to close my eyes and imagine what it would be like" to be a family of six celebrating the 3rd night of Chanukah at the city menorah lighting.  How I would be grinning from ear to ear watching all four of my children running around and stuffing their faces with candy while Sonzee tries to crawl around the cold cement ground.  How the kids would be running over to me to make sure I was seeing whatever shenanigans they were getting themselves into.  How happy we all would be together.  I am sure there would be a fight or two, and Sam and I would have to threaten to leave the event.  For a moment I can almost imagine what it would be like if Sonzee did not have a mutation on her CDKL5 gene.

POP!  My fantasyland journey is snapped back into reality as I watch every family scramble to their cars to start the parade of cars.  I am putting Sonzee back into her car seat and my son tugs on my leg.  Then as usual, I take a picture of my husband with my three oldest kids, realizing how sad it is that they have gotten so used to me missing all of the events.  Then I attempt to embrace my inner Olaf and I take a big breathe in, sigh, and continue with my winter as I dream about the unknown summer. 

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