As I sit at the end of my son’s bed as he lies curled up and in a deep, deep sleep that we can’t seem to wake him from. He seems to wake enough to take his medicine or go to the bathroom but then he drifts off to a place far away. 

Last night he woke but he couldn’t sit up for very long. His blood pressure is so low that any prolonged sitting causes him to become faint and nauseous. Mitchell’s motor skills are significantly decreased. We were glad to have him eat last night but he was lethargic and could hardly maneuver his fork. Still he tried to maintain his independence and wanted to feed himself as much as possible. We helped a little, but he managed to feed himself on his own for most of the meal.

For all intents and purposes my son is gone. He is here. He is breathing, barely. But in many ways he is gone. I don’t know if we’ll have another meal or conversation or smile … and that breaks my heart. At the moment it feels like the weight of grief is being held in suspension by the hope of one more … of anything.