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.
Growth comes in many forms and contexts. The strongest growth experience is the one which requires inhuman strength and achievement. If you had a child with an acquired traumatic brain injury which requires 24/7 nursing, you’d probably think, it will be all fine. The nurses will come and take care of him. This is not always the case. I’m facing my sixth night in a row of a twelve hour shift until the morning nurse comes in to relieve me; if there is one. I do this and get my boys up for their summer activities, and make some mommy-son time. When do I sleep? I haven’t figured that out yet.
Just the other day, I was pulled over for no staying in my lane. I informed the officer of my current circumstances. What would you do? The officer promptly reminded me that she was not in those circumstances and that I need to think about the safety of my son by staying within the lines and driving more carefully. Growth is what you discover about yourself when extreme circumstances arise as life happens. I guess I’m growing more than I know.
I know these circumstances are not typical. Not everyone faces what I face.I know there are other parents who struggle daily with caring for their disabled child. I keep telling myself, this too will pass. As each night of nursing my son to watch for seizures which may break through when I least expect continues to become more and more frequent, I have to keep a positive mind. I have to be hopeful. His quality of life depends on my positivity and determination to find an end to the suffering. I am his strongest advocate. With advocacy comes more growth.