My People

My People
My matched set of grandchildren - Oliver and Cosette

Saturday, August 24, 2013


When you're gainfully employed, no matter how well things are going, at the end of some period of time you're going to get a paycheck. Unless, of course, you're paid on commission but that's a whole different story. But for the most part, there's a reward for what you do. You're also going to have little non-paycheck victories like gaining a new client or receiving the gratitude of a client or a good review or completing a task.

That was the hardest part of being a Stay At Home Mom back in the day... there was never that validation or reward. No matter how hard you cleaned, there was something more to be done. Feed the baby, change the baby, put the baby to sleep, feed the baby, change the baby, put the baby to sleep... a continuing circle of life that was without monetary reward, without much validation and with no clear completion date in sight. (Although they do eventually grow and get out of the house, for the most part.)

Being disabled - or rather being in the process of being declared disabled - combines the lack of monetary reward and subtracts the sense of participation in the life of another human being. There are no sweet baby cuddles... no loving husband returning home at the end of the day... no new milestones to look forward to.

Being disabled is a survival game.  It's waking up every day and having to selfishly assess your abilities before even thinking about breakfast. It's a life lived based around disease or disability. You are held captive by your body and no matter what intentions you may have, you are always going to be limited by your diagnosis. You have to be your ambassador to the world, explain your limitations (which ends up sounding like whining or complaining) you have to advocate for yourself at every turn and your entire life becomes about surviving life.

A good day for me is a day where I am able to be able to shower, dress and eat breakfast before 11am. It's a day when I have the strength and motivation to run any errands that I need to run. A good day is a day that I'm patient with the process without feeling anxiety or discouragement at what I can't do. Good days are the ones where I prepare a meal, eat a meal and clean up from the meal all within the same hour. On good days the litter box is scooped, the floor is swept, the dishwasher is emptied/loaded and my world is kept clean to the standards of those in my orbit, who share my space.

I'm pretty proud of the way I keep my bedroom clean... I make the bed as soon as I get out of it on almost every day. I'm proud of the fact that I keep the kitchen clean. I'm proud that I remove any unauthorized cat dumping as soon as I see it... often when it's still grossly warm. A lot of the things I do to keep the house at status quo are painful. A lot of times these things are done with a grimace or with double vision from dizziness. A lot of times that work is done and never seen by any other human eyes - it would be apparent if it wasn't done over the course of time but the fact that it's done, every day, no matter what, that's just for my own satisfaction.You might say that the satisfaction of seeing a clean living space is my paycheck.

For 19 years I've struggled with raising a child who is different. He didn't behave like other kids. He was always dirtier. He bit. He ran away from me. He created messes. He started fires. He snuck out the living room window. If I left him alone for long enough even a few minutes, I knew that something was going to be destroyed - a bottle of ketchup poured out, feces spread on the furniture - always something. He has learned some better behavior skills over the years but he still has a tendency to leave a mess in his wake.

For 19 years I've fought against his hoarding. I've had to sneak into his room to carry out trash bags full of rotting food. I've had to go dig through his pile of junk to find his dirty clothing to be washed or dirty dishes when we ran out of forks. I've had to deal with his Oppositional Defiant Disorder which... basically just means that everything you ask him to do is going to require a battle. There are times (when he wants something) that he is cooperative. He is externally motivated but rarely internally motivated. There are certain things that he has accepted that he has to do and will do them sometimes with only three or four reminders. If he has his mind set on one thing, it's very difficult to convince him to change from his agenda to yours. There are other things that... honestly... I don't have the strength to go to battle over. He doesn't feel shame over not doing what he should - he feels anger that he's expected to do those things even when logic and common decency mean that these chores should be his. I don't have the resources to constantly dangle the carrot of exterior motivation for him. And I don't have the emotional strength to do battle with him every single day. I just don't.

My life, at this moment in time is the serenity prayer from AA: God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference. I can't do everything that needs to be done in running a big house and a big yard. I don't have the money to pay people to do the things I can't do. I can't motivate my kid to do the things I can't. My anxiety level is too high to face battles every day with the only human in my life. That kid - he's a pain in the ass - but he's all I've got. And I'm all he's got. I can't be in constant conflict with him because it alienates us both from the one person who is always there for each of us - each other.

People say that many people miss opportunity because it comes dressed in overalls and looks like work. My personal version of that is many people don't recognize success because it wears different costumes for different people. My version of success isn't measured in the amount of money in my bank account. It's not measured in validation for the things I'm able to do. My success looks different from yours. In my life, success means going one more day without giving up. It means facing challenges that other people are able to do without much effort. It means loving a child who is lacking motivation and empathy and having the vision to see his heart through the squiggly smell lines and the dirty feet and frequent melt downs.

My foundation is shaky and I'm feeling sort of alone in this process. It will pass. I'll find stable ground again. For now, though, it's exhausting and discouraging to be me and to not be able to be who I want and need to be. I don't want to wish time away because I know at some point I'll wish I was back at this time of life when I could still do the things I can still do... and when my kid was nearby. I miss his brothers so much.

That's all.