A living death is the way to describe it. To watch your child day in and day out in the condition. Never knowing when or how it will end. There are all these stories and all this promise, and nothing. Nothing that you recognize as peace ever really come to fruition. So you pray and you hope and you cry. Until one day you can't cry anymore. You accept the broken, and concede to be beaten. And you take your lickings as they come because that is the only certain thing, and you are used to it.
Jason needs a lumbar puncture. My job needs someone there. My kids need a mom. My husband needs a wife.
No matter how well I pay or how much I beg for help, the people who I expect to help me won't and the courtesy of strangers carries me through more often then not.
This disease has made my life a fucking mess. It won't succeed until I am fucking homeless.
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