As I have muddled through this journey of cancer and trauma in my life, it is only recently occurred to me that I don’t have to operate in trauma mode any more. I have scared friends off with scanxiety, which involves the panic we all experience before they tell us whether or not there’s more cancer and how much more. I have gotten surprised by mri’s in the past and have learned to never try to predict the outcome.
I realize much of this cancer of a child has become my identity. I am lost in real life. I actually read a third of a book today. I am trying to remember life before cancer. I cry as I write this, because it has eaten my life, my faith, my trust in relationships. I am tired and need to just stop.
I need to re-evaluate where I am. I am not in crisis mode any more and I am ok. Everyone is ok. We are stable right now and I have other fish to fry.
John needs an iep, public or private I have to learn to navigate the public assessment so the private schools have it and can accommodate John. I can’t hide from the school monster anymore. It will be good for him I say. But I am afraid he will not be dealt with properly or abused because of his brain damage. We pretty much let it slide here.
But, lets just get real for a moment. The school is going to need a one on one for John John. He needs help even writing. Aside from his behavior issues, he can’t physically hold and write with a pencil for very long. He is going to need verbal testing and a lot of side work on neuromuscular control, which will be provided by occupational therapy. I am remiss at not being an observer of his therapies. I am terribly scared that he will be dealt with incorrectly. Not to mention the 4 inch medical records the district is required to read as per the iep laws. I am having to fight to have him evaluated.
This is a new front for me. Mind wise, emotionally wise, and life wise. I am now not a victim, but an advocate. I have a mission, and that is to get John John the education he deserves. The end.
I am thankfully and painfully waking up to my new reality. This is real life again. I haven’t done this in two years and can’t quite make sense of all that has happened translated into real life mode. I know the dishes need doing, the kids need to at least change their clothes, I need to do laundry, etc. But its the mental part that needs to shift. I am not in crisis mode. I am not in danger. I can live normally without fear. I am having trouble transitioning out of that. I can have relationships I don’t question the loyalty of.
I am struggling about how to live and what I need to change in my thought pattern.
That’s enough for now,