Hard Days

Happy to be home - YES!  But, in the spirit of "keepin' it real," I'll admit it's been a couple of VERY rough days.  The period following hospitalization is always like starting over.  When Marissa is out of her environment for any reason, her world is turned upside down.    Before any well-meaning, Dr. Spock, Love & Logic, or any other parents who've read a book chime in with great ideas about how I should expose her to more things or let her "cry it out" or anything else, let me remind you that a child with severe brain damage and vision impairment doesn't follow any of the rules.  She does not have the cognitive ability to be reasoned with or to understand what is going to happen to her.  For seven days, Marissa lived in utter fear.  Every voice she heard, every footstep, every touch, every door opening or closing elicited anxiety that you and I cannot imagine.  For seven days she was poked and prodded and felt pain.  For seven days, she was held and rocked and sung to and played with every waking moment.  Basically, when she's in the hospital, I try to keep her calm enough to:  1. heal and 2. not hurt herself more.  When we come home, her world is turned upside down again.  We have to transition back to the sounds, activities, and routines of home life.  We have to transition back to her not being held and catered to 24 hours a day.  She HAS to get back to the point of being able to sit in her chair or her jumper for short spurts and be happy about it.  What this means is that often for days to sometimes weeks, there is screaming and lots of it.   She is so angry and it hurts.  She screams her high-pitched, toe-curling, neuro scream constantly; she bangs her head, hits her face, bites, and gags herself with her fingers.  I do what I can to calm her and keep her safe, but she has to work through this difficult time and it is so hard!!