Whenever I find myself getting sucked into the trenches I try to focus on something positive, even if it is a reach. There is always a fine line of looking at the bright side of a situation and embracing it, but not fully relying on it remaining that way. For me I have to be careful because the path of this journey can change in a second (literally) and then the positive reference is no longer. It is because of the experiences we have had over the past two years, (during springtime especially) that I am having finding it more challenging than usual to find the "right" positive point.
It has been a little over 24 hours since Sonzee's last seizure. It wasn't one of the scary ones, it didn't require oxygen after it was over, and she didn't sleep for hours on end. I am so grateful for the past 24 hours, but I know better. Maybe her medication increases are finally working. Maybe her brain is being nice to her and giving her a break because it's been a pretty awful week, or maybe it is just giving her some time because of what is yet to come. I wish I could be as excited as I once was over making it to 24 hours, but two years in and I know while it is a huge deal, the celebration will not last. I am numb to seizures. I wait and expect them and am more surprised than not when they do not happen. Truthfully I prefer knowing they are coming because it is a certainty, something I can "plan", something "reliable", I do not like to be sitting here in anticipation. So I am trying to focus on the past 24 hours...but I know the clock will reset.
It has been a significant amount of time since Sonzee has been inpatient and last year we spent approximately 3 out of 5 months in the hospital (not consecutively) from January-June. Her health since her NJ tube was placed has been relatively stable, her feeding continues to be tolerated, her seizures haven't landed us in the emergency room requiring rescue medications. I am truly appreciative of these blessings, but I know things can change by the time this post publishes. I know too much of what can happen and I know she is not immune to anything. I am trying to focus on the positive of all I have listed, but that almost feels as if I am asking for a challenge...and I am not all for tempting fate.
It would be nice if the current situation we were in did not leave me feeling a bit uneasy. It is as if my brain and body subconsciously know things are going to spiral out of control. I hope it is merely the fear of history repeating itself. Since we are in this uncertain limbo, I am going to do my best to focus on the fact that she is stable and continue to try and find the "perfect" positive.
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