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Wherein you will find posts with humor, photos, reviews, occasional rants and journalistic entries of interest to me alone but that I hope will touch you, the reader, in some way. I remain sincerely yours,
A Work in Progress

Wednesday, December 3, 2014

I'm trying

 

It's the holiday season.  My very favorite time of the entire year.  Family, friends, joy, gratitude, are words that mean The Holidays to me.

But I am struggling this year.

As we sat last night, three of us, happily ensconced in Agents of Shield, someone was missing.  There were sightings of the fourth one of us.  She would come down for tea, or to grab something she needed, but then she would race back to the comfort and sanctuary of her room.

Then there was a thing while she was in the kitchen and everyone's heart got hurt and it just sucks so badly because no one was at fault.  And everyone was in tears and my heart just hurt. There is no blame but also no way to make it better.

After I fell asleep, I woke to sobbing.  Getting up, going in, knowing there was nothing I could do, nothing I could bring her, not even my presence, just sitting there with her would or could comfort her.  Nothing to provide solace.  And she said to me, "I will try to cry quieter, I am sorry I woke you".  And I went back to my bed, laying there, listening to her softly crying, my heart breaking in a gazillion pieces.

How are we going to have holiday joy when one of us can't even sit in the same room with the rest?  And how do I rationalize that the healthier child deserves to have all the fun and wonder of the holidays without the crushing guilt and heartbreak because the other can't?

Will she be able to go get the tree with us?  Decorate with us?  And if she is able to have a good day, how hard is she going to crash afterwards, and for how long?  Will enough meds bypass the symptoms long enough for her to enjoy the day with us? Will her legs hold her up that day, will her pain abate long enough so that she is able to enjoy tree day?

What about cookie day, a long beloved tradition?  And if she can't go, if she isn't up to it, how much more will the grief of not participating set her back? 

 This minefield we are tiptoeing through is fraught with unknowns.  Currently, we have a new med protocol that we are fighting to get implemented and that hasn't happened before.  It came as a shock that all of a sudden, our primary is balking at the orders of our Lyme doctor, questioning his thought process.   I've emailed, called, and pushed and I will know more today after our trip to the doctor.

But we will try.  We are a family.  Through all of this, we are well and truly blessed, time and time again.   And no matter what, we stick together, all of us, and we will get through this.  There will be windows of joy, moments of festivity, and there will be love and compassion and there will be Christmas, ready or not.




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