It is 10:45pm on March 20, 2017 and we are in room 8128. We do
not normally face north so this is a nice change of view for me, instead of
watching the planes fly into Sky Harbor, I get to watch the cars drive on SR
51. Since March 2015 during this exact week I have found myself
surrounded by the same walls, in various identical rooms, and usually cared on
by a friendly face. With a stroke of luck, it just so happens that
tonight we are with one of Sonzee's very first PEMU nurses. One of the benefits
of the experience is when the nurse coming to take you to your room opens the
door and says "welcome back" and you see the same smiley face that
has been there to wipe your tears in the past.
There are so many
adjectives that I have in my mind to describe being in this predicament;
comical takes the lead, followed by unfortunate, nervous, weary, relieved,
eager, and my list definitely
goes on. I foolishly started
to think that we would slide right past this anniversary without celebrating in
Sonzee style. I suppose that is what I get for getting too overconfident,
for thinking that things could actually take a positive spin for little bear.
This is the part that hurts me the very most. I just cannot
understand why my baby girl just cannot catch a break. Every time I start
to see a small glimmer of hope it just gets ripped away. I really am
having a huge challenge comprehending this reoccurring Groundhog Day type of
testing. Clearly something is not being done correctly or it would have
stopped repeating already.
This is one of
those parts of living the medically complex special needs type of life that
makes you muster all that is inside you and push through because there is no
other choice. There is no other way to make it through these times
without reminding yourself that there is clearly a reason for all this pain and
anguish and it will one day be revealed...unfortunately it was not in 2015,
2016, or 2017...and in 2018 I will just buy Sonzee a cake and schedule an in-home
party for the week of March 18.
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