Friday, December 15, 2017

Stuck

There are some days when I feel like I’m crushing it. Like hey, with a little effort, this being a mom of a disabled man thing isn’t really so hard. Those days are very few and far between. So few and so far that I really had to think hard to find an example. And it’s not much. Sometimes I look at the activity brochure that my park district puts out and I figure out what my son might like to do and actually get to the administration building to sign him up. Whoopy! Right? Or, I might look at the weather app on my phone far enough in advance to set a date to do a WorkerBee collection and take all the steps required to make that happen, so that a week or two from now we can have something to do on a Tuesday or Thursday besides going to the grocery store. We will have a beautiful life to post on Facebook and show the world; to mask the way I feel right now.

I feel stuck and I know he feels it, too. He really truly is stuck and that is what breaks my heart the most. He depends on me for every single thing. It is so overwhelming sometimes I don’t think I can stand it. So, I get stuck. I don’t do anything.

I don’t want to wallow in self-pity. That is not good for either of us. But I feel like I’m not good enough to be his mom. I fail him way too much. I imagine what it must be like to be him. It feels horrible. He does not do one single thing unless I make it happen. I am responsible for everything. His breakfast, deciding if he gets a bath, his activities, what he wears, his movies, his lunch, his communication device and showing him how to use it so that maybe one day he will use it to say something and be more independent in choosing everything he wants in his life, including how to live it. That feels like a pipe dream. What is a pipe dream? Why do people say that? Oh my! I just looked it up and it refers to the dreams that people have when smoking opium. Now, that’s funny! I don’t drink in order to avoid not being there for my son, but if ever there was an excuse… A pipe dream sounds pretty damn good right about now. But, no. He needs me.

Anyway, what else am I responsible for? Oh, yes, his dinner, his snacks after trying to get him to eat his dinner, making sure he gets enough fluids, wiping his bottom and his nose, his laundry, taking him to and from activities when there are any, getting ready for bed, filing paperwork for him, making phone calls for him, so he can keep his Medicaid and SSI, figuring out what will happen to him when I’m gone. I have no fucking clue, by the way. I am terrified of that.

So, terrified I want to jump on it and figure it out and so terrified I don’t know where to begin or what to do. Sometimes there’s a meeting about housing for people with disabilities two hours away in the winter on a Thursday evening at 7:00 that none of my friends want to go to because they have family that will care for their child when they are gone. I want to go, but not by myself in the winter on a Thursday night two hours away. I’ve gone before with some friends. I learned stuff, but not enough to make something happen. I need to go to more meetings, but the meetings are not here, where I live, and even if they were my friends would not want to go, to make a plan together for our kids. They don’t need this like I do. I probably would find some excuse not to go either. Because it scares the hell out of me. And so, I fail because I am so scared I can’t function. And it is so not fair. This life is so not fair. For him or for me. But here we are. Stuck.

And what about my life? Whoever thought this would be my life? Not me! Do I want to spend hours researching housing and programs for his future? Did I sign up for this? I envy people who can have a dream and go for it. People who are not stuck. I have dreams and hopes and plans for myself that will never come true. But many of those dreams are because I have him. Without him I would not know what I know now. I hate to think how shallow I would still be without him. He has brought wisdom and growth that I never would have gotten without him. Does it make this suffering worth it? I can’t answer that in this depressed state. I want to say yes, but right now... It feels like a no. To be oblivious would feel like heaven compared to this grief and worry. My grandmother is dying. She is 90. She gets to die knowing that her children are self-sufficient and capable of caring for themselves. I won’t have that. I envy her. Not the dying, but the dying with that peace. But I am grateful for everything I have learned by having my son in my life. Seeing the oblivion of others is not pretty. Knowing I still have some of it is not pretty. But at times like this, I wish I had complete and utter oblivion. I wish I could turn away from his suffering. Now I feel guilty for saying that. Another fail.

So, there are friends of mine who have had a bad experience with a group home for their son and now are having a wonderful experience with a different group home. This gives me hope. Then I remember that waiting lists, and funding, and red tape, and bullshit in Illinois politics… and fear crushes the hope out of me. What makes me so afraid? All the horror stories I’ve heard, but also the fact that if I am failing him, what makes me think someone else won’t fail him worse? I am his mother and I can’t do this! But, some stranger who’s in their 20’s, not married, has no kids; I’m supposed to rely on them making $10.00 an hour to care for my son with challenges? Yes, relying on someone who has no clue sounds really great and optimistic. Eye roll. Hopeless. I am alone. He is alone. We have family, but this is all on me. The weight of the world. The life experience of my 29-year-old son is my responsibility and mine alone.

So, my television is my opium. It takes me into a fantasy world of other fake families who live exciting lives where problems happen, but everything is wonderful by the end of the show. And he gets between me and my TV. He keeps pulling me back to reality where I do not want to be. But, I feel bad for having this refuge, too. It takes my focus off of him, which is bliss for me, but hell for him and so it ends up being hell for me, too. It’s one more way I fail him.

I write this blog to try help other people feel better, but there are times I can’t help myself feel better. It feels hopeless. I feel helpless. And now my head is stuffed up from crying and I’m going to have to lay down to sleep soon. My beautiful boy is sleeping in the next room after this completely dull day where his mom could not make herself do anything other than care for his basic needs. I feel horrible about that. Especially since it was the same exact day as Tuesday. The same as it will probably be on Saturday and God knows how many times over the 18-day break from his day program. Yes, I count the days. I count how many days my failures as his mom will be shoved into my face. No one shoves them in my face, except for me. Every hand wave telling me he wants to go somewhere when there is no place to go is the unintentional reminder of my failure. All he knows is that he wants to leave this dull house and go somewhere. He does not know his pleas are my failure. Every thought I have of what his life could have been like if only…

Will I have the courage to post this for eyes to read? I want the world to know this, but I don’t want my family to know it. They can’t do anything about it. They will read it and feel bad. I don’t want that. I don’t want a conversation about it. I just want to feel it until its gone. I want others who feel it to know they are not alone. But, I also don’t want it to make anyone else feel hopeless.

I know I will get through this dark period. I always do. But my fear feels stronger every time. Probably because time is running out. I won’t live forever and I wake up aching every day now. Arthritis? Fibromyalgia? MS? Just plain old age? Who the hell knows. Today I am stuck, but hopefully tomorrow I won’t feel stuck. We will see.


Thanks for reading this and for just being somewhere out there. It helps to know you are there.

No comments:

Post a Comment