Where is the time going?  In my effort to simplify my life, it's become a whole lot more difficult. 

Just when I think everything is working out, a wrench appears from nowhere and it all changes again.  I'm learning that hope isn't something you master in a day but every day is a new opportunity to hope. 

I love December.  It feels like an unwinding of a world that has been wrapped up so tightly in worldly matters.  We all seem to take a collective exhale and slow down to, at least in moments, help shed a little love and light upon the those around us we deem to be less fortunate than ourselves.  It's almost like a rebirth of hope that humanity will actually pull through.

This week, my hope was dashed on several occasions.  Health insurance continues to be the thorn in my side it was designed to be.  Work is full of problems but the biggest blow of all came with a call from Huntsman.  We've been waiting to get Shelbie's PET scan done and every other day, I've called to remind them the appointment still hadn't been scheduled.  They finally responded on Friday by saying the head of the Radiology Department, some doctor we have never seen or heard of,  denied the request for Shelbie's scan.  He claims that she had one last year and it is not necessary to do another one.  I immediately contacted our team, via email with a very frustrated, somewhat Mother Bear of an email. 

The back story is, that when we met with our Neurologist in early November, she gave us a 10 page scholarly article on the prognosis of CVID and the progression of the disease.  The article clearly states that once the granuloma tumors have left the confines of the lungs, treatment needs to be more aggressive in the form of chemotherapy.  Shelbie has tumors in her abdomen, and her brain.  I asked in my email how they can educate me on the precarious position Shelbie is in and then they sit around humming and hawing about when and if to start treatment and then...some random doctor who has never been involved in our case gets to pull rank and determine the course of treatment...or lack thereof. 

So, all of this, and some low moments this weekend, left me wondering  what to do with hope.  What do you do when hope seems like a waste of time and no match for the way those around us can screw up the plan?  Hope is this intense belief that everything is working out.  When it appears that this isn't the case, there goes hope.  Life everything else in life, I am learning, as I pause to ponder on such things, that maybe there's more to hope than I thought.  Maybe hope can be nothing more than a 'hope' that everything will make sense. 

I love how a small shift, a pivot in our perspective can take an overwhelming angst and make it manageable. 

I don't know how this is going to end for Shelbie but I hope that as we move along on the path of everything going wrong, we will at least see how it comes together to make sense.  I hope that a deeper understanding prevails, in the end.  At least I hope.


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