I am heartbroken. I want this site to be a place of hope, but I also understand that, for some, there will be no answer. That is a cold reality which is sometimes hard to bear. This disease will take and take and take, and the clock ticks, the muscles deteriorate, the body robs from itself in an effort to keep itself going. Days, then weeks, then months can pass without any answers, and there are no guarantees that any of us will find the answers we need in time to help them-- if there are even any answers to be had.
Tonight I lit a candle in honor of this poor little one who did not make it. Rest in peace, dear one.
I hate this horrible disease.
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