Monday, January 16, 2017

Beautiful How It Hurts

I came across this quote and it seemed to resonate with me.


I can't say for sure why or how we keep going.  You could say all sorts of things and they may border on truth of the whys and hows.  Certainly, there is a generous degree of mercy from Heavenly sources that help us out.  

Shelbie is going on week two of being quite sick.  She did have two days without a fever and she managed to even do a couple of photo shoots.  She had some issues during the shoots and was extremely fatigued.  She continues to have an odd set of symptoms, fevers and that flu-ish feeling.

Tomorrow, we meet with our regular docs and a very specialized doctor in Utah to see if she can make sense of it all.

In the back of my mind, I am always wondering if this is the right thing to do.  I feel like we just chase our tail in these appointments yet at the same time, it's evidence that we never give up.  What if this doctor was the one who actually figured things out?  What if we had given up and refused to keep fighting this?  What if there is nothing more we can do?  But again, what if there is?  It's the age old problem when living with an orphan disease- how much is too much and when do you stop the madness.

I'm a little nervous about  the outcomes tomorrow.  It seems that every year, I witness a little more deterioration in her.  I worry about the day when she can't stay ahead of the hurt. I worry that in one afternoon, our entire life may change in drastic ways depending on the outcome of these pending appointments.  You just never know.  In many ways, I'm more nervous about these next few days than waiting weeks for biopsy results.

So, here's to the beautiful mess we find ourselves in again...still.  Here's to never giving up.
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