Tuesday, August 7, 2018


Yesterday was Sonzee's first day of the 2018-2019 school year.  Since she does not wear a uniform she of course was wearing an adorable "first day of school" outfit, complete with a rhinestone centered hair bow.  She took her first day of school picture in front of the chalkboard wall in the playroom and when it came time, she was escorted by an entourage into her classroom.  Since she attends school with her same at home nurses, I am left with little to no anxiety about the process.  We found her cubby, placed her items inside, explained to her teacher the stationary note I will send to school daily to keep her updated on how things were after the previous school day and the current morning before school, gave Sonzee a kiss, and off we went.

I walked down Utah Dr (which is the street in her building that her classroom is on) while I saw and heard the sounds of a more "typical" drop off experience.  Children sad to see their family members leaving, parents quickly running out in hopes that it would make it easier for the distraction to begin so their child would calm down, and me too preoccupied to give anything a second thought, while trying to hurdle the other kids I had with me out of the building so we could get to our next checklist item.

Due to every school day this week being a half day, a mere 2 hours and 45 min later, with the entourage in tow, we went excitedly to hear all about Sonzee's first day.  Maybe it was because of how wonderful things were last year during school, I did not give any thought to the possibility that her day would or could go any other way besides perfect for her.  I honestly do not know why with all of discomfort, cries, and pain she has been experiencing at home, I assumed that being away from home and back in school would make her magically better.  I do not know why I was taken off guard when her nurse told me how miserable she was and how she wishes something would work for her because she cannot spend her days like this.  I know all of this.  We have been living it all summer.  We have lived this so many times before.  

Last night as I sat thinking about Sonzee's first day of school I was brought back to a position of frustration.  Frustration that yet again, another first for her has to be tainted.  Frustration that another day for her was spent in pain and that we are failing her by having no answers or giving her any relief.  Frustration that this has become our normal.  Frustration that whatever band aid we do provide will likely result in more pain in a different way.   There is not winning and no matter how much normalcy we attempt to provide for her, it is nearly impossible for her to just experience a first. 

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