Tuesday, December 11, 2012

A Violation of My Own Credo

It's funny how our moods can change. If we have relatively good mental health those mood changes may swing gently and only occasionally -- happy in the morning, slightly melancholy in the evening, no big deal -- but however they manifest they are patently human.

Last night I was feeling pretty good. Goofing on Lars, writing a little, feeling the afterglow of Benjy's (brief) presence in the house. This morning I'm feeling lonely and sad.

I think the problem is that I have violated my own credo. If you've been reading this blog since its inception you might remember it: One Day At a Time. Sometimes, One Hour At a Time. When you have a kid as wonderful and as impaired as mine, you cannot think too deeply about the future if you want to sleep at night and function during the day.

The phone call from Ben at 8 this morning got me wondering what's to come.

He asked me to get him and bring him home for his four-hour pass right after dropping Saskia off at school. I suspect the anticipation of my saying yes was what got him out of bed so early.

I told him no, and it did not go over well.

The reason I said no was because daytime hours at the hospital are for "school" (such as it is, a classroom for a motley collection of struggling kids -- pretty lightweight stuff) and group therapy. At 3:30 that's all done, and that was when I was planning to pick him up.

I told him that if he does not show the doctor he can handle school and groups the doctor will not find him ready to be released.

He told me he wanted more time in the afternoon with his hospital friends. I wasn't buying it.

"Oh, mom," Benjy said, his voice quavering, "Please. Just this once. I am SO stressed. Just please."

This broke my heart. I told him I would consult with his case manager when she finished with rounds at 11, but I am determined to hold firm.

And here's what troubles me. How on earth is he going to manage ANYTHING in life if he cannot manage the lowest-pressure stuff that is not simply sitting on the couch playing video games? His home pass yesterday was the first pass he could complete, because he got to be in his comfort zone -- on the living room couch. (His other comfort zone is his bed.)

The times we have taken him on 3-hour community passes he's lasted an hour and a half tops before wanting to go back to the hospital. He simply cannot handle being out in the world, even with me.

When he's out and about he yearns for the hospital. When he's at the hospital he years for home. When he's home he is restless and dissatisfied with what he has available to him. He is always seeking some other plane of existence, some more and better stuff to do, animals to own, food to eat.

He lives in a constant state of restless desire. This breaks my heart.

His doctor thinks this is mania, and that the mania is caused by his meds, which are currently being tweaked.

I think I've seen this stuff before, that we may be adding yet another diagnosis to the many he already owns. And when I think about what is to come I want to cry. I don't know if he will ever find a comfortable place in life beyond our living room couch (and even that does not fill his void). I want so much more for him -- and for the rest of us. I am searching too, always searching for the thing that will make Benjy whole. This has become my vocation, my quest.

And right now it has become my sorrow. It's a lonely endeavor, ever-searching and coming up dry. Benjy must know all about that loneliness. How sad I am for him.

Somebody please remind my of my credo. One. Day. At. A. Time.


  1. Consider yourself reminded. Also remind yourself of your strength and the love that surrounds you.

    1. I wonder if anyone has guessed that this "Anonymous" character who keeps commenting is my mom?

      I love you, Anon!

  2. I can't imagine what you're going through with this, the rollercoaster of Benjy's Tx and Dx, Dx and Tx. But it was so neat to read your happy and silly post, because without days like that, life would be so very difficult. (That is what I tell myself, when I'm trying to talk myself off the ledge, when I am feeling guilty for having a bit of fun while Rome burns.)

    Also, your mom rocks.

    1. Atty, thank you for your kind thoughts. I know, we totally need those silly moments (fun while Rome burns -- I love it!). And you are quite a perceptive person: my mom DOES rock! Thanks for dropping by!

  3. I'm reminding you, too. What am awful state of limbo for YOU to live in. Benjy continues to be in our thoughts and prayers. We know that hospital well ourselves. They do good work helping to figure out the puzzles our beautiful children are.