Another night working toward the healing of my Lucho. The month of June is splattered with holes of zero night nursing, which falls on me to fulfill after spending the day recouping some sleep while a day nurse attends to the needs of my ever-miraculous boy. This is done while hoping my older children make positive choices while their exhausted mother tries to rejuvenate for another evening, watching my seizure laden child sleep in between moments of colonic-tonic nerve pain associated with a severe traumatic brain injury.
While I enjoy the moments of doing things I don’t normally get to do during the daylight hours, I’m overwhelmed at the amount of advocacy needed to bring him the best quality of life. This is contingent upon my success as an advocate. Do advocates sleep? Probably not the good ones. Advocating for someone with a traumatic brain injury requires a lot of research, asking questions, and finding support in a valley full of deathly thirst. His progress is the encouragement I hold onto as I find my way through this mess. Supports are critical in order to proceed toward more progress because there are so many moments of depressed attitude about his well=being.
It’s almost two years since that horrific day, which I wish to never remember, but can’t because of the fact that he is a living miracle, which my friends and neighbors don’t understand the level of commitment needed on a daily basis, with enormous amounts of enthusiasm, so that Lucho doesn’t feel depressed and unmotivated.