I write to read.
Boy am I reading.
I’m reading and while I know I write accurately to remember and learn, it is pretty depressing. Don’t you agree? Does it get more depressing than this blog?
But I’m getting double hit.
Not only am I living it, but I’m reading it, over and over.
And when I’m not reading myself, I’m reading studies. Reading the WHY behind our new torture protocol. The doctors only tell the HOW. My research shows that this protocol is for the most concerning of cases. No doctor tells you that part. They just tell you what they recommend and quickly start listing action items. Straight into the how. They ain’t no dummies.
Just like when you talk to your child and you ask “what do you want to do first bath or homework?” You take away the whole choice of doing any of these activities and leave no room for the WHY behind the question, you make it about procedure. Smart. Maybe I taught you that.
And guess what, the doctors do the same to us parents. I’m not blaming them. They don’t want to scare you and what difference does it make. You are going to do whatever they say regardless and the why gets you no where. No where. This I’ve learned and then read again and again to master.
Except now I know the why.
They didn’t tell me that we fall in the most concerning of the already concerning high risk category. Even in the study I read last night, which groups long term survival by MIGB scores post induction (that is the chemo & surgery protocol we did before scans), Jacob’s MIGB score was in the highest category. A score of 19 is unusually high.
I’m numb. Steve tells me what difference does it make. He, of course, has read this study weeks ago, but doesn’t share with me, you know the emotional one. The one who will go into hysterics instead of logistic problem solving. The one who watches Jacob suffer all day.
But he’s right. I know he is right. It is just a longer process for me. It took me a good month to accept induction and now this protocol is HARD to accept. It is a hard reality to live. I can’t help watching him sleep now and snuggle up and cry into a pillow. I can’t help it. I know he is in pain.
So in summation, my reading has me DOWN. Real down.
I need to change my reading material or at least even it out a bit.
I’m giving myself homework (again) to write about something completely random at least once a week. Nothing from this reality but from other realities. Things from your time. Not up for it yet, but the goal is to start soon. Something joyous for me to read later. A memory from the past. Things that are WIN WIN WINs.
So I make his list to hold myself accountable.
Baby Gender reveal parties- only joy there
Jacob’s puzzle brain
The chicks! The eggs arrived
Mind the Gap’s crazy success
Benno going on a train
College restructuring (got some thoughts on this one. Oddly talking about such things are joyous for me)
Village Community School (been beyond impressed with Benno’s growth and care)
London in high school
Steve, Steve and Steve. He deserves a good letter.
Favorite lesson plans
My Halloween costume (Hint: pearl armor required)
I’ve also changed my TV programming. If you are looking for new content that absorbs the mind in positive ways. I have some suggestions. I’m loving the Bill Gates documentary on Netflix trying to learn from his example. He seems interested in only good deals. His work in energy is really fascinating and he has so many set backs but keeps going. A good role model. And Steve and I both love the show “Explained.” There is definitely an educator behind this series. Smartly done. Highly recommend.
Okay. This weekend I will start working down this list.