From the time Sonzee was a little baby Sam has always said that my happiness directly correlates to how she is doing overall. When we find ourselves in a time period where we are walking on "Sonzee eggshells" in terms of her response to whatever discomfort she is experiencing it is difficult for my attitude and overall demeanor to not be a mirror. When she has a bad seizure day, a challenging GI day, or is just not up to much, the reflection in me is clear. I have become a master at hiding my outward appearances, but a good portion of the time, I do not have the energy to shelve the reality. On the flip side, when she is having a great day, you might as well call me Burt from Mary Poppins when he is doing the penguin dance.
As a parent its in our nature to want only what is best for our children. We want them to first and foremost to be happy, once that occurs everything else seems to fall into place. For those of you who think, wonder, or say "I can't imagine how you do it" when it comes to the situations we are faced with, it is beyond words for me to properly convey what it is like to constantly watch your child go through setback after setback when the starting point isn't even that great, to begin with. Happiness is unfortunately not as simple as it seems to be with our typical children, and it is exhausting on many levels to try to make things even just tolerable for her.
There are definitely moments throughout the day, albeit sometimes they flicker similar to that of a lightning bug, where a smile appears across her face. Sometimes it is actually purposeful versus the ones that are simply a precursor for seizure activity. Occasionally she will smirk in response to a statement made to her and it is actually voluntary. There are times that catch us off guard with her reciprocal social participation. It is during these times and moments that I feel like a charging battery. Each little event gives me enough energy to continue pushing through. It's in these little moments that everything is worth it. Despite finishing our days on average with less of the positive it is in those sparks of positivity that fill my dreams of hope, and leave me saying to her "and may the best of your todays be the worst of your tomorrows".
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