One of those weeks...

It was one of those weeks where disappointment, stress, and life collides.

I think I have the final tests that Spectrum requires finally figured out and scheduled for this upcoming Friday. I will meet the transplant surgeon the following Friday with repeat lung function testing the day before.
Once all testing is complete, the transplant team will review everything and decide if they want to list me at Spectrum. I anticipate the decision in the next 2-3wks.
Going through this again is difficult and it will be nice when all is done and plans "finalized".
Today is Easter and normally we spend it at my mom's-instead we were here. (I missed last yr as I had pneumonia) I really cannot leave the city of GR as one never knows when 'the call' will come. I need to be able to get to my plane within a hour of receiving the call and make it to Wisconisin in the allotted time. It is an approximate 1.15-1.30 hr flight in my reserved Cessna. Flying west across the lake there is always opposing winds and anyone around this area knows weather in general can change in an instant.
So I'm really tied down to this area which I don't think people realize.
It is times like this where I feel trapped, there is no escape, Greg and I can't take a weekend away, and there are certainly no future vacation plans.  We would love to be able to plan a Disney trip with our 5yr old but that is on hold. This sucks!
The uncertainty of my life is so heavy at times. Instead of a Disney trip for Eric, I'm thinking of writing cards to him for future b-day/special occasions in case mommy isn't there. How wrong does that seem?!?!?
AAAAAAAAAAAAAAAARGGGGGGGGGGGGGHHHHHHHHHH!!!!!!!!
I tell myself, one day at a time and keep your head up but sometimes I just want to bury my head in my comfy blankies and hide. But life does not stop and neither will I.


P.S.
Thank you Heidi and Becky for offering their families for Easter celebration. Both tried a few times to have us over today but I declined, I needed some time to recharge my batteries. I can't say I feel totally recharged but will keep trying.