My dear fellow GRIN parent asked me five questions last week. Here is the storm of words those questions have created. One of the questions was
What do you love about your child?
Unfiltered first thought was I love that he is alive, but at the same time I hate that he is alive. I love that there is a warm body to hold, but I hate the fact this body doesn’t belong to my daughter. I hate that this body might never use its arms to reach out to me and hug me. I hate that I have to forever move, carry, dress, clean, groom… this body. I’m writing this sitting in a hot bath, crying my eyes out trying to soak away the immense pain in my joints that came last week and barely goes away with painkillers.
November and December, together with June, are the most hated and feared months in my life. The celebrations, the gatherings, the joy is too much for my brain tormented by the physical and mental darkness. I drift away to the “just survive, somehow” mode, grow distant to my friends and to my husband. We carefully thread around each other, mindlessly ask “how are you doing?” not wanting to know the true answer. It’s just a way to fill the awkward silence between us. We still maintain the rule developed while Sara was at the ICU. Losing your shit is ok, but one at the time, please. I did my lion’s share of losing this weekend and the thoughts and words that came out of the hidden dark place were real and painful. I will stress here for the readers that I’m not suicidal, never was and most likely never will be. I don’t even bother fantasizing about it, since I know I’m too chicken shit to do it. So don’t worry about me.
All those awful feelings have the same origin. The absolute lack of control over my life. I’m a prisoner of my son’s disability and his medical needs. Day after day the same routine inside the walls of our house, isolated, separated, removed…
I’m the kind of person, sorry used to be, that doesn’t complain about the system but goes and finds a way within this system. That is a luxury I’m not longer allowed to have by the “disability prison system”. This system turned me into a complaining mother, who labels herself as a advocate out of shame and desperation. I have no control over my family’s financial well-being, since I can’t simply go and get a job, because nobody will care for my son. I’m sentenced by my own government to do it in perpetuity for free. Until I can do it no longer, forcing me to surrender my child into the care of the state. Whom ever will take him will immediately receive $2,000 a month tax free for their “work”, plus all the lifts they need for their house and a car. Makes sense? No. And look at me, I can’t even refrain from “advocating” when pouring my heart out into these pages. That’s how much this prison has changed me.
I tend to end my posts in a positive conclusion, upbeat message of hope. Sorry the injustice of my sentence is burning too deep today. It’s 9 am and the guard is banging on my door demanding me to resume the daily schedule. My Groundhog Day has begun,only I do not know the future and can’t change anything , or can I?
Ok upbeat ending once again, maybe I’m not completely damaged yet.
ktojoy 