Shame and Joy

Funny how shame and joy often travel in pairs. At least, they do in my life.

Yesterday I wrote a post that was beneath me. Only I didn't know it until someone I love gently told me so. And then I was ashamed, and I was also flummoxed. I thought, "What the hell was I thinking when I wrote that?"

The answer is, I wasn't. I was panicking, and I was feeling very sorry for myself and my boy and my whole family. The former is a fairly common occurrence in my life. The latter, not so much. I can't let it be or I will just come undone. And that would not be pretty.

I deleted that post last night. Then I tossed around all night worrying about whether I am just a crappy person. And also about what was going to happen at 11 this morning.

What happened at 11 is that Benjy's hospital case manager and I met with him in the "living room" on his psych unit to tell him how his life is going to change in a couple of weeks.

I believe, in my heart of hearts, it will change for the better. But I did not know what he would think. and I did not know if this talk would hurt like hell or feel good, or whether we both would cry.

The case manager and I told him he will be going to a new school, and that he will live at that school. That it won't be forever, and that after he starts there he will no longer be lonely and sad, and that he will have lots of structure in his life and all kinds of wonderful things to do that Lars and I cannot provide for him.

Such as archery and tennis and fishing and boating and snowboarding and work with animals, and therapeutic horseback riding. And possibly haying (??) and ice-fishing. And overall, an expansive new world.

Not to mention, friends and friends and friends, and they will  be kids like him so they will get him, and he will get them.

We are going to choose between two schools and then he will go for an interview and hopefully in a couple of weeks he will finally find his place in this world.

God I will miss him. I told him today that he will be living somewhere else because we love him so much. And he got that. He did.

He seemed shocked for a moment, and it looked like he might cry. But he didn't. He said he was okay. And after I told him all about the new things that would be entering his life he said, "Thank you. Thank you for doing this for me."

And I held him and tried hard not to cry. He said, "Can I stay at my new school until I graduate?"

And I said, "One day at a time."

I didn't even mention that one of the two schools is engaged in repopulating a certain kind of quail, and every year during the season when quails lay their eggs they raise over a hundred chicks.

I couldn't tell him because the decision is not yet made -- but if and when I do he will go nuts.

Long-time readers of this blog know that Benjy LOOOOVES birds.

Anyway, the grace and maturity with which he accepted the coming change -- a HUGE one -- was stunning. It made me happy, really happy. And he was happy, too. I took him out for a celebratory lunch. And to Target to buy some much-needed shorts and PJs and a board game to play in the evenings with the other kids on his unit. He was with me until Lars came home, and after the two of them played some Frisbee we drove him back to Boston. To his now-home. And soon enough we will be driving him to another home.

But after the first month we will have him weekends if he wants to be here. And if not we will spend a lot of time in Connecticut or New Hampshire, wherever he ends up.

And let me just say this: none of this would be happening if it weren't for all the amazing folks who have devoted time and energy to helping Ben. Social workers and doctors and special ed administrators. And friends. Huge shout out to our district's SPED team, who responded to Benjy's need with compassion and without hesitation. These are pretty amazing folks.

Tonight I think I will sleep well. I hope so. Tomorrow's another day, and we'll see what it brings.

Haven't We Met, Out and About Town?

Oh yes, right here. At The Nickel.

How could I forget? I mean, it's only been, what, 11 days? On the other hand, 11 days can be an eternity.

So much has happened in those 11 days. The sun has increased its volume by 35 percent. (Don't look it up, just take my word for it. You know you can trust me.) The grass in our yard has risen to ABOVE-KNEE HEIGHT. (And we live in a town where virtually EVERYONE has fancy landscapers taking care of their emerald plots. Embarrassing.) Every morning when I take the Hellacious One out for his walk I say, "Welcome to the jungle."

All kinds of things are waxing around here, and a lot of them are good things, for once. Except for the grass, and the weeds, and the weed trees on our property (the latter of which drop all kinds of disgusting, wet vegetative matter on our cars all spring, so we're driving around looking like the Beverly Hillbillies of Eastern Massachusetts, but before they found that oil well in their yard and got stinking rich. I've got the junker car and the house with peeling paint but none of the benefits of a supply of "black gold" on the property.

Oh. Well.

Anyway, the waxing of good things. Well, there's Benjy. He's been back in the hospital for about three weeks after severe suicidal longings, a desire to stab himself -- or for me to do it for him -- greater and more intense than I had ever heard . His stay in the acute inpatient unit went pretty well, but we had no indication he wouldn't end up right back in the revolving door to the hospital. And that was getting pretty tired. For everyone.

Then our insurance did us a favor, only at the time we didn't know it and we were pretty angry. They kicked him off Unit One onto a lower level of care -- the CBAT unit. (CBAT=community-based acute treatment.) It's in a different part of the hospital. It is a different beast. Still inpatient, but not a locked ward. Very, very structured -- more so, I believe, than Unit One. Every day Benjy has group therapy sessions and school and lots of outdoor activities (he has organized a regular ultimate Frisbee game there. He has taught the other kids how to play it. He turns out to be something of a mover and a shaker, at least within the confines of CBAT. We never knew he had that in him).

He is thriving on the structure there. He is rising to the challenge of participation in all aspects of his current life: groups, school, eating the bad food without complaint and without hassling me to bring him outside food (and baby, that food is BAAAAD). He has tripled the amount of time he is able to tolerate participating in school before needing a break. (Ten minutes to thirty, if you must know.)

And here is the BEST thing of all. The BEST SUNSHINY BEAUTIFUL HEART-STOPPING GOLDEN THING OF ALL: he has friends. A community. And we have realized for the first time how isolation, how not belonging to any kind of community outside your own family, can crush a person's soul. Make depression and anxiety ten  times worse.

So, let me spell it out for you: 24/7 structure and clinical supports + a built-in community of peers who really are peers and are there for him ALL THE TIME=happy and functional Benjy.

That gives us data we can work with. Finally. And we are working with it. With a wonderful team consisting of school administrators (some pretty spectacular ones in our town, I must say), clinicians and social workers, and a very special friend, we have moved a mountain and done it so easily I have to pinch myself every so often to make sure I am awake.

Lars and I spoke with urgency, passion and love about our boy and his needs to people -- one person in particular -- who could make things happen, and things are happening, For real and true. That's all it took -- passion and love and a clear idea of what was needed. And a person on the receiving end who cares about our child and our family -- all of the children and families he serves, I am quite sure -- and who accepted without question his ethical (and very costly) mandate.

I can't say more now. I will as soon as I can. But for the first time in a really long time -- at least two years -- I have hope for my boy. That feeling of hope waxing in my breast is so wonderful I could scream (but I won't because Lars is snoring away upstairs and I wouldn't want to disturb his beauty rest).

Other waxings: somehow, in spite of my own sometimes vexing symptoms and Benjy's implosion and that leaf-meal-encrusted junker that makes small blond children turn and stare as if I am some sort of freak, and my car is an even bigger one because it is leaf-encrusted AND not a German luxury car)*** I am writing like a demon (a good kind of demon. I'm sure that kind exists). And for me, that kind of productivity looks like four pages in three days. Three good days. But it is happening, and it's coming out in good shape.

I just "sold" (for the currency of tons of exposure and a nice feather in my cap) a personal essay on stress to the Huffington Post, for their series on...stress! I'll link to it here and on my website when it comes out in a couple of weeks. That was one of those four pages in three days kind of essays.

I most likely sold (for the currency of a small handful of greenbacks) a different essay to a glossy magazine. (That one has been out there looking for a home for about a year -- and if they accept it, it may be another year before I am paid. Publishing is slooow, even if you have the good fortune to be able to work quickly.) The editor who would like to buy it is awaiting an A-Ok from the Grand Poobah of Glossy Magazine Publishing.

And then I will take Lars out to dinner with the proceeds.

I was also invited by the editor of one of the most prestigious literary journals in the country to please submit some more creative non-fiction, pronto, because he was very enthusiastic about the last one I submitted although he was not going to publish it. (Win some, lose some.) This is one of those "50 bucks and two free copies" kind of venues. At the rate I am going I'll earn a couple of dinners out a year, if I am lucky, but it's gratifying.

Oh, and I have one more little piece, also written over a long stretch of weeks, in the hands of an editor at The Paper of Record. Hoping to hear back on that one soon. Again, payment in exposure (as far as I know). And probably a long shot.

On the downside, stress is waxing larger than ever for all of us around here but I hope and believe it will subside soon.

But we are laughing, too, and having a little fun. Our Saskia has been whisked away by friends for a weekend in NH. Lars and I are thinking of fun things to do with Benjy on his home passes this long weekend, while tackling, finally, the grass jungle.

Shit happens, and less frequently (for us, anyway), lovely things happen.

So there it is.

***I do, however, have a German Luxury Husband, whom I've only seen leaf-encrusted once, when he decided to get up on the roof and clean out the gutters during a prodigious rainfall. So there, smug blond children. There.

Here We Go Again

My sweet boy is going back in the hospital, most likely tonight. I heard a thing today that no parent should ever have to hear. I heard it once before when he was ten.

Please help me end my life.

There are no words to describe the pain of that. I heard other things, too, that tell me I cannot keep him safe. Not now. Even though his evening meds have taken the edge off his despair he is not fooled, and neither am I. We know it will come back.

Lars cannot bear the thought of this. Can't we just try to make it better here? he said. I'll play tennis with him. We'll play Frisbee. We can hide the knives where he'll never think to look.

Lars forgets that someone around here has to earn money so we can eat, and that it's not going to be me. So tennis and Frisbee with Dad are not a sure thing. (And somehow I don't think that's the answer. I don't really think Lars believes it either, but desperation will do that to you.)

This will be Benjy's third hospitalization since October. The hat trick. It will be the fifth in all. And he is not yet thirteen.

Please, please, please let it be the last this year.

Another Encounter With My Glorious 47-Percenter

I saw her yesterday, at the hospital. I know now that her her name probably starts with an M. Benjy told me that, and he also told me she's very, very nice. "Isn't Mustang a wonderful name?" he said. "Like a car that is a thing of beauty."

I was walking down the corridor of Unit One with Ben and she emerged from the bathroom, mop in hand. She seemed suspended in another universe, dreamy, thinking about some delicious food or happy interlude. It was a moment before she saw us.

I smiled broadly and said hello. She smiled back. Her smile was warm and her lips a sort of sunny red. She wears make-up, I thought with surprise, and that small fact made her seem strong in my eyes. A Camilla among janitresses. She wears make-up and she cleans up after a posse of broken children, some of whom scream and try to kick down doors and some of whom make various sorts of unpleasant messes. The make-up tells me that she finds this a job worth doing, worth dressing up a little for -- and that she is brave enough to undertake it. I don't know if I would be so brave. Or that I would be able to maintain my dignity, as she does, in spite of the dirty toilets.

I did not see shadows lurking in her face, shades of the death and struggle and sadness I know are part of her life.

When she noticed Benjy she did a little dance with her mop. Waltzed it in a wide circle.

"You're back!" she said, as if this was something to celebrate -- not the illness but the presence of this young boy.

He nodded, held out his hand. She clasped it, drew it to her lips, and kissed it.

"Thank you," said Ben, who is polite even when taken aback. Although I don't think he was taken aback; I think he just went with it. For a child in a locked unit, anything is possible and much is impossible. You have to roll with the punches.

She looked at me. "So tall he is now," she said admiringly. "So big boy."

I agreed. "I didn't think we'd be back so soon," I said sadly.

"But I am glad to see my friend," she told us, and before I could answer she waved and turned away. There were more bathrooms to clean. More broken children who needed her smile.

What I do not ever see inscribed on Mustang's face, or hear in the tone of her voice, is bitterness. I think she expects nothing more than the chance to work, to make ends meet. To help her family with money, and with love. She is not afraid of hard work. Even though she is neither my sister nor my friend, I am so proud of that.

You can read the story of her family here, in my original post about the woman Ben calls Mustang.

This Lonely House

This house is so lonely without Benjy in it, I could cry. I woke up in the middle of the night to use the bathroom, and peeped into his dark, open bedroom. Because for a tiny moment I had forgotten he was gone.

His narrow bed with the white down comforter was empty.

I caught my breath and when my heart calmed I went back to bed. I woke Lars and told him I missed Benjy. "Me too," he said. "And the sad thing is I have so much work on my plate right now I probably cannot even visit him."

Because Benjy is back in the hospital, the same one I wrote about last October when this blog was born. He knew he was struggling beyond our ability to help him, beyond the collective abilities of all his outpatient mental health professionals, and he wanted to go. We left him last night at peace with his surroundings and himself.

It reminds me of the story of Mary Lamb, early 19th-century writer/intellectual and sister to the essayist Charles Lamb. I only know about Mary Lamb because in some college English class we read something by her brother, and the Norton or Oxford anthology offered a little blurb about them.

Apparently, Mary Lamb was intermittently "mad" (yes, the Norton or Oxford editors chose to use that word), and whenever she felt the madness coming on she would calmly and patiently ask for her strait jacket, and Charles would strap her up, and they'd walk to the nearby lunatic asylum. (Forgive me that -- it's what they called them in the 18th-19th centuries, and you'd be better off in prison. Really.)

I can't help thinking about Mary Lamb when I think of Benjy's understanding of his own needs, his willingness, and even sense of relief, when we told him we thought a hospital stay might be in order. He WANTED to go. (Except Mary Lamb stabbed her mother to death, so I hope the similarities end there! ;)

What Benjy said was: "I need to take a break from things. Life is too hard right now, so I need to step off it." He didn't mean permanently. What's wonderful and beautiful this time is that he is NOT suicidal. He is just completely non-functional, at school and at home. Deeply depressed. Withdrawn. sleep-dysregulated (sleeps all day at school, up all night at home). Unable to eat much. Ticcing so severely his body is never at rest.

For us, that may be the hardest part. Watching him tic relentlessly. Of all the things that make Benjy different, that one is the most public, the most obvious.

I know that one very well, thank you. It is a curse. There's chemical help for it, but at the very least it makes you fat. At the worst it makes you a cognitively blunted, fat zombie. It makes you walk and talk funny. It makes you need glasses, and to drink water every ten minutes because your mouth is dried out.

(HALDOL, I'M TALKING ABOUT YOU.)

I once swore I would NEVER, EVER make any child of mine take Haldol. The Soviets, according to my father, gave it to political dissidents to render them metaphorically impotent. So I was sure as hell not going to give it to any kid of mine.

Now, looking at my poor Benjy, I have to wonder what would be best. Because he's going to have to choose his evil. Would he rather be a weirdo due to the tics, which are exhausting to boot, or due to being a fat zombie (see above)? I'm afraid that may be a choice he has to make.

What is it about our family that we tend to be given shitty choices?

The Universe: OK, Anna, you can either have breasts and ovaries or I'll give you a fifteen percent chance of surviving into your forties. Quick, you don't have much time to decide!

Me: Uh, can I draw again?

Somehow, life doesn't want to reshuffle and give you anther hand. So you have to make dowith the one you got. Ben got the one that gave him Asperger's and Tourette's and OCD (I haven't even mentioned that DX yet) and mental illness. I got the one that gave me Tourette's and the breast cancer gene. Poor Saskia got the one that gave her what appears ever more convincingly to be lupus. (Did I mention that the day before yesterday her painful knees, thought by her rheumatologist to be runner's knee and not the arthritis caused by Lupus, because her knees were not hot and swollen, have now become hot and swollen? Troubles come in groups around here.

All I can say is, thank god Lars is completely normal. Except he's barking mad in his own, endearing ways.

Anyway, I am bracing myself for a lonely day, with no Ben to pick up at two-thirty (or hang out here with, as the case might have been) and Saskia out at a volleyball game until 7:30 or 8, and Lars no doubt working late.

Thank goodness for the Hellacious Hound, that's all I can say.