Monday, September 29, 2014

The Deepest Abysses of Hell

Wow it has been ages since I have written here. Not because I have had a sudden need to no longer write about the craziness that is our life. But because life is crazy. We have been so busy lately that there hasn't been time for writing. That however doesn't mean that OLA has changed. He hasn't. Some things have improved other seem to have increased in epic proportion. But yesterday was one of those days that we were once again thrown into the full scale of battle and are slogging through the trenches. Church has always been a bit of a battle ground when it comes to OLA. But some weeks are better than others. But at this point it may not be a battle ground anymore.
In talking to someone working in our children's group OLA has more or less about made himself a persona non gratis there. Unfortunately the adults are not necessarily wrong in saying he might not be welcome there if the behaviors don't change (which unfortunately they probably won't) I hate when they serve it up with a bunch of so called well meaning platitudes. I get tired of being told that they all understand - they don't. You can never understand the living hell our lives can be unless you've walked in our shoes and parented a child who is like this. I cannot undo the damage that alcohol has done to my son. I cannot make him behave like a neurotypical child. I cannot change the choices that his birthmother made when she was pregnant. I cannot change any of these things no matter how much I wish it or how much my heart aches that it could be so.
As I talked to this adult they did not tell me anything I did not already know. There was nothing new to us about his behaviors.  But that wasn't the only thing that remained old news it was the same old song by adults who really have no time or interest in understanding why he behaves the way he does. It was the same old words "I know he understands the difference between right and wrong." "I know he can control himself", "I know he understands what he should be doing", "I know he is capable of doing what he should" .  It never changes - know matter how many times I say Knowing, processing, and actually being able to do are all different things. Things that his brain can't always manage. They are all still trying to fix my child based on the expectations that he will behave "age appropriate and as if he were a neurotypical child.
At this point I don't know who I'm more frustrated with OLA or the adults. I feel once again like I am drowning in the deepest, darkest, most ugly abyss in Hell. There is no escaping this reality that I live in everyday. And if you are raising neurotypical kids there is nothing you can tell me about OLA's behaviors that I haven't already seen, heard, felt or lived with in some form or fashion over the last ten and a half years. I have been in the trenches for that long I know far better than you will ever know. But with rare exception I also know more about my sons struggles and disabilities than you will ever care to try and learn. There is pain there that only another mother raising a child like OLA could ever understand. It is so deep and sharp and it rarely ever sleeps. Almost every waking moment of every day it filled with pain, worry, and fear for my child and his future. There are no platitudes that you can give that will change this or the damage that alcohol has done. He is a victim as much as all of those around him that he lash out at for reasons only God knows. Alcohol has permanently scared all our lives. Even though for us none of us drink.
To quote a popular movie - A kingdom of Isolation - that is what we are starting to inhabit. The list of things that we no longer or seldomly participate in anymore continues to grow. And as much as it grieves my heart to think about church may soon very well be on that ever growing list. We are an island a drift in a sea of isolation and nothingness. Eventually we will drift right off any existing map.
Darkness, Darkness, Darkness is all that is found in the deepest depth of the abysses of Hell.