Friday, March 8, 2013

Week Ninety-eight - Not This Month.....

CHOP Nephrology called yesterday and it looks like, because of the delay in asking for anaesthesia services, we won't be able to have Babygirl's kidney biopsy this month.  I do not find this particularly troubling. 

Whatever is happening with her, the antibodies, the possiblilty of rejection, the odds that they are going to be starting new and invasive treatment - it all seems unimportant.  It was, in all truth, a relief to hear that we don't have to go next week (although, now that I think of it, I think I need to call and cancel our clinic appointment and make sure they don't want some lab work done locally). 

What is coming is coming.  What's going to happen will.  Either she's rejecting or she's not, but no part of the treatment they described will undo it.  I'll accept delaying the inevitable by whatever means are available.  But I don't have a huge sense of urgency about it.  I do, however, have a sense of urgency about painting, signing off on my taxes, and restocking at the grocery store, and scheduling court appearances on behalf of my patients.

I have too many things going on to not be relieved when something big and unpredictable gets put off until later. 

Last year, the big, unpredictable thing was the transplant itself, and we would have dropped a trip to Disney to make it for that (ask my family - that's a big deal LOL).  Last year, the unpredictable was good news, excellent news, miraculous news.  Our perspective has changed.  Now unpredictable almost always means bad news, worse news, scary news. 

People ask me how she is.  "She's at school today!"  or "She's home today" are my standard answers.  More than that and I have to begin a depressing litany of how well she isn't doing.  Headaches have dropped from seven per week to four or five.  The kidney is being rejected and I don't have any idea how long that process takes.  The only bright light shining is her daily schooling, so she's less behind than she was. 

And of course there is the very bright light that is Babygirl.  She doesn't whine about anything except having to share the TV with JuJuBee and Boo.  She deals with pain, fatigue, midications and unpredictability with grace and courage.  She finds reasons to laugh, reasons to hope, reasons keep on going,  from some deep well of resilience that seems to be inexhaustible. 

As always, I am deeply ashamed of myself when I see how amazing she is.  I talk about faith, but she simply lives it.


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