The tapestry of the life of a medically complex family

Archive for August, 2014

2 Years & STILL Screwed

Two years I have sacrificed my health, any semblance of life outside the playroom, having clean laundry on any kind of regular schedule. Averaging 4.5 hours of sleep a night, but never consecutive. Clawing at the soil on the edge of our cliff, trying to hang on. Eating oatmeal 2 meals per day while feeding the kids what they need for health & growth.

FINALLY I refinance. FINALLY I find a grant source to support some of the ingredients for my son’s whole food formula. And, in the last week, finally finding nurses for night time so that I may possibly learn what it is to sleep 5 hours at a time… With the 3 shifts I have on 2 weekdays, I might be able to grocery shop with just ONE vulnerable kid in tow…

And the insurance is dropping hours from my nursing schedule. If I have overnight nursing, I can’t have day shifts. If I use day shifts, it’s back to no sleep… WHY is it that we never make headway? Forget winning, how about having the opportunity not to FAIL?

😥

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