Monday, January 7, 2019

Life isn't...

I can't seem to shake the words Sonzee's GI doctor said to us during one of our visits over the past year when we were debating putting her on gut rest.  The words keep taunting me, popping up during every diaper change, every time we put the thermometer into her ear, every time we pick her up and carry her, during every transition, every time we get her dressed, and really every time she moves.  During and for at least 1-5 minutes after each and every one of those previously mentioned activities she screams out loud and cries hysterically while her body trembles and shakes. 

"I don't know if it will help, because her body will find something else to interpret as pain".

I keep telling myself but for two weeks she was perfectly happy.  It was only after we did the infusion for her bones that the proverbial avalanche started.  The one that we still cannot seem to get to the bottom of.  Was it just a trigger?  Will the pain eventually dissipate?  Did we just divert the pain but not really solve anything?  Is this just a small bump in the road on the path to recovery, or is this going to be her new norm?  Did we not only lose the happy bear we were so beyond excited to meet and get to know but instead make things worse for her?  Did we just spend 22 days inpatient for nothing?  Did we introduce a vessel of potential bacteria that could kill her for nothing? 

How much longer will this last?  Why does every good intention end with a huge lump in the back of my throat and tears in my eyes?  Why does she always have to suffer at our expense?  I want to just fall to my knees and scream, we are just trying to help her, WHY??? why is it another thing?! Why can't she be given a break?!?  Just once I would like a decision we make on her behalf to actually help her and not cause a secondary backlash.  Was it the solution to the gut pain?  Was this going to occur despite the "GI pain distraction/elimination" no matter when we did the bone infusion? If not the bone infusion would it have been something else? 

Sadly, I have played this game before.  We have been here so many times I only wish I was numb to it.  I know that we won't ever receive any answers to any of the above questions.  We will simply have to let time give us some cryptic answer that won't be straightforward and will likely only come from us having to make another educated guess.  Life isn't always perfect.  Life isn't always easy, and life certainly does not always make sense.


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