Tuesday, May 12, 2015

Most Unexpected

It's been an odd week of sorted feelings.   Sometimes, emotional things don't really hit me until days later, maybe even weeks.  I realized today that maybe I have this aversion to facing reality.

Today, for some reason, I'm struggling.  I've thought about all the things that could go South for us and this stupid disease, Dyskeratosis.  I realized how blessed we are that the kids are doing remarkably well considering their marrow is just hanging in there, they have multiple holes in their lungs and heart, leaky valves, crappy pancreases, connective tissue disorders and the remaining list of deteriorating bodily functions.  It's such a polar feeling of opposites to be scared and blessed all in the same moment.  It's most unexpected.

Today, I read my dear friend's blog where her husband posted that his beautiful wife, Alisa has officially been placed in the caring hands of Hospice.  After 8 years of fighting Melanoma, there is nothing more they can do.  There will be people who will say, "Well, that's to be expected" but to me, it's most unexpected.  Maybe I have hope to blame for that. I hold on to hope, hold out for hope, hold hope against what could be. It's hope that makes all the bad things that happen so very unexpected.

It was also unexpected that in that moment, I felt just holiness and reverence for Alisa and her husband.  I feel like I am losing my best friend but the truth is I have only met her once.  One very special moment in Seattle.

It was unexpected that in that moment, I wanted to jump in my car and drive down to Utah to say goodbye and tell her how amazing and wonderful and inspiring and honest and perfect she is. I want to see her one more time before she goes Home but I am just a stranger on the side of her blog.  It was a most unexpected feeling.

Today, I felt more of a struggle with my own setback in health which I have yet to report here. The news of what I am facing was most unexpected on Saturday.  I'm still trying to process it all and wait patiently for more tests to come back.

Today was suppose to be a day to get myself caught up on some things but instead, the most unexpected things happened and I scarcely know what to do with myself.


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