One step up and two steps back

When Perry and I were newly dating we used to listen to a ton of Bruce Springsteen.  One song that always spoke to me was “one step up and two steps back”  It feels like that is how my life was.  Lots of people not believing in my abilities or my intelligence or my capabilities and when I proved them wrong they would be surprised which of course pissed me off.

I feel that for Nick today.  He is fighting hard, but it isn’t on the timeframe of doctors and therapists etc.  He may be in this semi vegetative state for a very long time and possibly forever and that would crush my heart into smithereens but I have to say he has taught me more about who someone really is outside their physical nature.  My son, Our son is a shining ball of beautiful light.  He communicates in his own way and now I absolutely understand how parents of disabled children read their kids.  One has to let go of “shoulds” and “oh, how horrible to live like that” and embrace another point of view.  What makes a human being human anyway?

This is not a throw in the towel moment by any means. I still believe Nick will make remarkable strides and move toward recovery but I am letting go of timelines.

Today we had the two steps back moment.  Nick’s cat scan yesterday showed he has new fluid on his brain and may need brain surgery.  He may get a shunt which will draw fluid off his brain which may make him feel more comfortable.

Earlier today he held my hand and we had a very mom son moment which I treasure when that happens.  I also took another film of him moving his arms because he doesn’t do it on command when the doctors arrive and they look at me like I am a desperate mother.  Which is untrue, I am more on the fierce side of the equation.  I am more (hold your ears kids) a “don’t fuck with my kid” type of parent.  I have been known to be a bit confrontational in my past ,but this time around I am not that.  I am just standing firm in what I think is best with my kid and so far the doctors have stood down and respected that.

So here I wait to learn what the next cat scan says and if we are leaving here.  Right now his neurologist says he isn’t as concerned as the neurosurgeon and the neurosurgeon has the last call, but for me I am leaning into the great physician in the sky.  It is up to Nick and God each step of the way.  Just give me the ability to navigate this new life I have.  

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Stay tuned.