I Have a New, Regular Blogging Gig--On Psychology Today Magazine's website!!

Hey there, Readers!

How ARE you?  Mad at me? I know, I've been a crappy blogger-friend.

But hey, you know. Pain. Depression. Pining for Benjy. Listening to Saskia sing, angel that she is.

WRITING. JOY. YEAH!!!

OK, here's the 411.

Ben is amazing. So proud, we are. So handsome, he is. And brave. And healthy!

We'll have him the entire last week of August, and Readers? I CANNOT WAIT.

Saskia is soon to start her arts high school, as a junior. We are all hugely excited. Looking forward to a year filled with performances of all kinds!

Lars is...Lars! Gotta love him. No, not you! ME. And I sure do.

And here's the biggest news of all:

I'VE BEEN OFFERED A REGULAR BLOG ON THE WEBSITE OF PSYCHOLOGY TODAY. That's the magazine you read in waiting rooms. And hopefully lots of other places, as it's a very good one. What an honor!

What to Expect When You Get the Unexpected.

I am so excited about this--you can't imagine. The general subject matter will be similar to that of the Nickel...but less informal, fewer (read: 0) Hellacious Hound posts, and a bit less humor at Lars's expense.
(I know, bummer...you won't be reading entire posts about holey clothes.  Although I could always satisfy your holey clothes cravings back here at the Nickel. ;)

You can also expect film and book reviews on occasion, over at the new blog, and more multimedia engagement in general.

Anyway, please, please join me at my new blogging home! I'm committing to blogging there every MWF, so get ready! (And keep your fingers crossed for me--that's a lot of writing!)

Can't wait to catch up with you here! xox

All Kinds of Wonderful

I'll bet the title of this post surprised you. You are not used to wonderful here at The Striped Nickel, are you?

Well, if you've been dropping by for a while, perhaps you are, but perhaps you've forgotten. Or think I have forgotten.

I haven't.

Here is some of the wonderful going on around here as we speak:

A. Benjy, Benjy, and more Benjy. He is doing so well, and his school is so amazing, I have to pinch myself a few times a day to make sure it's not all a dream. Readers, he is LEARNING, and not exclusively on his own. He has FRIENDS. He is MUCKING OUT HORSE STALLS AND FEEDING SHEEP.

Sorry, I didn't mean to yell at you. Not at all. I just cannot believe it and shouting allows me to hear it better. It's true, all true.

I love that boy so damn much it hurts. Seeing him hurts in a joyful way, and not seeing him hurts in a missing-you sort of way -- but not-seeing allows healing all around, so it's good. So. Very. Good.

B. Saskia is wonderful. WONDERFUL. Did I mention wonderful? Not sure what Lars and I did to deserve our girl besides contribute some genes of a very mixed nature -- when you have a spare eight hours or so I'll tell you all about our...uh, colorful families -- and teach her the things we strongly believe to be true. Which means she has a deep sense of the urgency of socio-economic justice for all. And she loves books and animals and people and ~OPERA~ and actually has the voice to SING it.

Also, she finds the dog-speak I use when I talk to Noo Noo hilarious. We laugh uproariously at the dinner table when I ask the Hound if he is ready for his Pill-Pocket with a yiddle Pred-nisone inside.

I appreciate that, because really? I think it's probably just weird.

Then again, we celebrate the weird in this household. Pied-beauties, eccentricities, things and people on the far-reaches of "normal."

Oh, and Saskia has brought music back into my life after a long, dry spell -- my own Sahara of the Bozarts, to borrow a witticism from some 20th-century southern writer but I don't remember which one -- and for that I am so grateful. Music was everything to me -- music and books, that is -- until life became so hard I couldn't fit them in anymore. There just was no room.

But every day now, there is more space in me. Every day I get to hear bits and pieces of arias and art songs floating through this house.  Sometimes I get to have them whole. And boy, does that make me happy.

Have you had enough, Readers? I hope not, because there is even more wonderful afoot here. There's Lars, of course. Everyone needs someone to make fun of, and Lars is always willing to oblige.

Somehow he has always managed to love me, even when I could not love the life I was living, or myself. He loved me through those forty pounds Risperdal packed on me, and through the long, sick period last winter and spring, when they fell off. He takes me as I am, the Gestalt, the whole package, imperfect as that may be.

Lars is good people.

Today I had the privilege of thinking about, and talking about, some of the issues that matter most to me, with some very thoughtful people. That there are real things binding all of us humans together, and that much work is yet to be done so that every person is treated with equal dignity and offered opportunities to be happy and to thrive.

It sounds so simple, but somehow it's not.

BUT: I am lucky to live in a place and at a time in which these conversations are possible. How utterly cool. How hopeful. How wonderful.

And finally, there is this:

A. E. Housman (1859–1936).  A Shropshire Lad.  1896.

LIV. With rue my heart is laden

WITH rue my heart is laden   For golden friends I had, For many a rose-lipt maiden   And many a lightfoot lad.   By brooks too broad for leaping         5   The lightfoot boys are laid; The rose-lipt girls are sleeping   In fields where roses fade.

A tiny poem, a profound thought. My Dad gave it to me as a gift when I was maybe ten or twelve. He did not write it, of course, but he wrapped it in tones of love and offered it to me so we could cry together. To this day, I hear those eight short lines in his voice. I thought of it last night because Saskia was talking about the generation of English poets writing around the time of the Great War. This was written earlier, but it trembles with that same unbearable sense of loss you find in Thomas Hardy and Wilfred Owen.

Readers, I have been thinking about "With Rue My Heart is Laden" since last night. It is so sad, yet so utterly beautiful.  Nearly perfect, I think. I hope you like it, whether for the first time or the hundredth. It's the final bit of wonderful I have to share with you until next time.

I hope next time comes soon!

Want to share your own wonderful in the comments? That would make my day!

You Think I'm Dead, Don't You?

Well I'm not. I'm here, Readers. Sitting by Lars on the butterscotch couch. The Hellacious Hound is snoozing nearby, on the red rug, and Saskia is upstairs pretending to do homework but almost certainly doing other, more interesting things. (Trying on outfits that will not be warm enough when she leaves for school at 7:40 tomorrow morning, for example, or watching something like Parks and Recreation on Hulu, or maybe engaging in acts of Facebookery.)

The fact that I do not know and do not care overmuch tells you something about me right now.

It tells you I am tired.

I did talk to my boy tonight, after a three-day phone call hiatus that was not my choice but which we all survived just fine. My mother reminds me on a regular basis that no news is good news. And usually she is right.

He sounds a bit low these days but he is not in crisis -- yet. Maybe this will the first autumn in four years without a breakdown. Funnily enough, we'd forgotten that this is hospital season, that short days and long darknesses are incompatible with happiness -- in our boy, at least. It's because he has come closer than ever to happiness since I stopped being CEO of his life, that we'd forgotten about hospital season.

But here it is, and all we can do is cross fingers and act all German by pressing thumbs and shouting toi-toi-toi!, and hope he will be OK.

In other news, my short story "Hello, Kitty" will be published at some point (soon, I hope, but you never know) in the online journal YARN (Young Adult Review Network). I did not realize I'd written a YA story. I have never really written for children or adolescents. But my good friend and writing group buddy, Diana Renn, publishes for the young adult market and she told me that I had, in fact, done so.

And I said, "cool."

My other good friend and writing group buddy, Eileen Donovan-Kranz, has a wonderful story out on YARN right now, and if you read it you won't regret it.

Also, I registered Saskia tonight for the 2014 Classical Singer Competition. This is a biggie. She will compete in the first round of the high school division at Boston Conservatory (there are regional first-round venues across the country), and if she makes the semi-finals or beyond she will compete in San Antonio, TX in May. Her teacher thinks she will make it to semi-finals (probably not finals as she is on the younger side and singing art songs rather than arias -- and if you don't know the difference you are in very good company;). So we are excited but also terrified by the implications for our traumatized checking account.

(To be honest, I'm a bit annoyed by the fact that two out of the three composers whose work Saskia will be performing are people I'd never heard of. This challenges my inflated opinion of my own classical music intelligence. Oh well.)

And that, Readers, is that. Glad you didn't give up on me. :)

Hello, Goodbye

It is such an odd thing. He comes and goes like a dream.

Hello, goodbye.

This is not the way of most thirteen-year-old boys. The healthy and the happy ones stay, mostly. Sure, they go for short periods of time. Sleep-away camp. Sleep overs with friends. School trips. Visits to Grandmas and Grandpas and aunts and uncles and cousins.

But their home is with their parents, their siblings, their dogs or their cats. Their neighborhood is theirs to roam. They feel comfortable in it. Their community -- the one in which their house sits and their parents pay taxes -- opens its arms to them.

Not my boy. He had to go a hundred miles from here to find a community that would open its arms to him. To find a home that was not bounded by four walls, and companionship that was not always and only his mother.

If the cost was seeing Lars and Saskia and the Hellacious Hound and me only twice a month, it was worth it to all of us. I know he misses us. He misses this little house and the butterscotch couch and the trampoline out back. He misses sleeping in his own bed.

But what I have not quite figured out is, which home is his REAL home? Ours? The one he flits in and out of like a dream? Or the one that lies a hundred miles from here, where his friends also live, as does the large staff that helps him navigate life and learning? The one that comes with the three people who love him more than the world, or the one where he can access just about everything he wants to do, and feel successful?

Readers, it is not just that this school has a working farm on it, and lap-bunnies in the classrooms. This is a place that can offer Benjy things like golf (yes, he goes every week to a golf course. He is learning and loving the game). And on-site batting cages. Tennis and swimming right outside his door. Access to a gym where he can lift weights. A ropes course. 3-D printers that will let him create all kinds of cool stuff. A fly-fishing pond a short drive from his current house, and just behind the house he would like to move into (and is self-advocating a strong case for said move).

I could go on and on. But it will just confuse me more. I don't know for sure which home is Ben's real home now, but I am so glad he has them both.

He's coming here tomorrow for his first two-night stay since he left us in early July. To say I'm excited would be an understatement. I'm a little scared, too. But Lars and I have a plan. We're going to keep him active the whole time. After school he plays football and Frisbee and tennis, or goes to the gym or the golf course. Here, he will get to go kayaking, play tennis, do some archery, maybe teach his younger cousins how to throw a football with just the right spin. We're going to have him plan some meals and help cook them. He is going to eat good food.

Most of all, we are going to love him and keep him as close as we should, but no closer. If I had my way I'd just hold him the entire 48 hours, but that is not, apparently, what you do with a happy and healthy 13 year old.

He's not cured. He will live with what he's got his whole life -- just like I do. And so many others, too. But he is learning to manage his Homeric catalogue of Hard Things. What a gift that is, to all of us.

And the Party's Back On...For Now

Okay, for the umpteenth time I have written a post that turns out to be untrue.

It's not that I'm a liar. Or being "writerly" and making stuff up. It's just that my boy changes moods like a teenage girl changes clothes: frequently, and often for no discernible reason.

Hey -- is that why they call it a "mood disorder"?? Huh. Who knew? ;)

So I either need to wait a day before posting doom-and-gloom status updates, or I need to qualify them with "wait a day or two and things will be better."

The day after the episodes I described in my last post, Benjy was happy and even CHATTY on the phone. (All you readers who are parents of teenage boys will understand why I put "chatty" in caps.) And he continues to do well, as far as we can tell.

We miss him so much, even though our house is noticeably less stressful now that he is not in it. Doesn't that sound awful? Man, it sure feels awful when I say it. It makes me feel like a horrible mother -- callous and self-serving.

I am not either of those things, which is why the feelings bouncing around inside of me are so damned confusing.

How can you love a child as much as I do mine and feel better when your home is no longer his? This might make sense if he'd gone off to college at 18. But he's 13, a young 13. And one day we just let him go.

But that sounds all wrong. It IS wrong. We helped him go to a place where he has half a chance for happiness and success. And you know what? It seems to be working, apart from a relatively few moments of sadness on his part.

We had our eagerly anticipated bi-weekly visit with him on Saturday. Apart from a panic attack in the car halfway through (Ben, not me) it was wonderful. Just wonderful. He has grown in so many ways, I cannot believe it.

But Lars and I have to deal with his absence and it is harder even than we thought it would be. Last night we had a rare evening out, just the two of us. Oh, it was lovely. We felt young and happy. The last time we'd been at that restaurant Saskia was a very new baby and we thought I might get a job offer from Columbia University. (We were obviously mistaken.) We dreamed and planned and thought we might live in the Manhattan neighborhood my family settled in when they fled Germany in the 1930s. Washington Heights. We thought we might be able to afford it there, and besides, there is a wonderful, beautiful park overlooking the Hudson at the end of my Grandmother's street, Fort Washington Ave, and I always loved that place as I was growing up.

The dinner was great, but sadness crept in and we had to force it back out. We just plain miss our boy.

Funny how plans get derailed. The Scottish poet Robert Burns said it best:

The best-laid schemes o' mice an' men
Gang aft agley,
An' lea'e us nought but grief an' pain,
For promis'd joy!

I love that to Burns, a little field mouse was worth a poem. (Then again, he also wrote a poem about a louse he observed on a lady's hat at church. So you know...) I think there's a lesson in there somewhere, something about the value of those small things we tend to think are unworthy of notice.

I think there is a lesson to me in that, for sure, as I try to figure out my life going forward.

Readers, I think I will be blogging more about me in the near- to mid-future. I won't forget Benjy, no fear, but my own path has taken yet another unexpected turn. It's called fibromyalgia. I've mentioned it more than once before, and I am trying to master it. If I can't do that, then I will have to learn to live with it on mutually congenial terms. I am trying to figure out a path to physical and emotional wellness.

Anyway, here is a little parting gift, a  memento from our visit with Ben on Saturday:

I only put this in because you can't see his face. I love the colors in this photo. It was really like that -- a clear, bright, vivid day. The red building is Benjy's house. I think what I captured here was a pause in his Frisbee toss with Lars. A few minutes later he walked back to his friends and we were on our way. If we have to leave him behind I am glad it's in such a beautiful place.

Ben, I know you won't read this but my heart is so full of love for you it seems to take up all the space in my chest. Be well, my darling boy. Be happy. You are so loved. xo Mom.

And the Party's Over

Oh, I should have known it was too good to last. Even though the director of the school told us about that month-long "honeymoon" period, in which students love everything about their new lives, followed by a big dose of end-of--vacation blues, I thought we were in the clear.

I thought I could start worrying about myself, taking care of my own, increasingly significant needs. I thought I could try to relax. To sleep more and better. To exercise (as much as I could swallow -- unfortunately, exercise and I do not get along very well). I thought Benjy was all settled, with friends and activities and good food in his beautiful green-meadow-and-dry-stone-wall corner of New England.

I guess I thought wrong, once again.

The sad phone calls have returned. We'd only had two of those at the very beginning of his stay. Three at most. But they're back.

Fuck.

They always start out OK. With a forced optimism that makes me think (fool that I am!) that this time I've dodged the bullet. That he really is happy.

Benjy: Hi Mom!

Me: Hi Ben! How ARE you?

Ben (slightly flat in affect, but that is his usual mode): I'm good.

Me (all bouncy): What did you do today?

Ben: Uh, I played Mumbleply.

Me: I'm sorry, could you repeat that?

Ben: I played Monopoly. And mumblemumble with credit cards and you can mumble stuff.

(Benjy has developed a habit of rushed, slurred, and mumbled speech. I guess it's from all those pills he knocks back every day.)

Me: Wow, that sounds like FUN! A new version of Monopoly with credit cards? And did you play with your FRIENDS in your house?

Ben: Uh, I guess. Oh, and I have earned $20 in allowance. Tonight when we went to the store I spent half on a card game.

Me: Awesome! Good work! And you can play it with your FRIENDS?

Ben: Uh, yeah. Whatever.

Readers, I think you know where this is going.

Me: So, what else, Honey?

Ben (in a lowered voice): Look, can I just tell you something?

Me (heart sinking): Sure!

Ben: This place is not for me. I miss you,. I want to come home. No one will be friends with me here.

Me: Honey, I heard you've made a great connection with C.

Ben: C is leaving end of August. I want to be a day student. Can't you help me? Can't you get me out of here? I will go as a day student. I just miss you and want to be home.

And then, Readers, the tears fell. His tears and mine, although mine were, and must always be, secret. As hard as it is, I have to be strong.

I told Benjy that he cannot be a day student at a school that's an hour and a half from home. It just will not work. Of course he did not believe me. I am so afraid he thinks we don't want him with us. That we've thrown him away. Oh god, that thought is killing me.

I tried my best to remind him of his sadness and loneliness at home. Of how little there is to do, and how our lack of expendable income rules out most of the little there is. (Benjy is not a fan of free stuff, like strolls along the river, unless he can bring his fishing pole. But I don't feel qualified to supervise fishing.)

I tried to remind him about the revolving door into the hospital, how that is no life for a boy of 13.

It didn't work. He tried so hard not to cry but I suppose in the relative privacy of the porch of his house, with my familiar voice in his ear, he let himself go. It's what happens now.

I asked him to get the house mother on the phone. He said no at first, because he thought he would get in trouble for having a negative conversation. I promised him that would not happen.

"This was not negative," I told him. "You are feeling sad, and you shared your feelings. That is OK, and I will tell her so."

So he fetched the house mother and we talked about Ben. He is having trouble connecting with the other kids -- especially on weekends, because on weekends his house closes up and he goes to stay in another house, where the kids are less familiar and older.

This is one of the few things I don't like about the school. Most other kids in his house have been there long enough to have earned home privileges every other weekend. So with only one or two kids around, they close up Ben's house every weekend and consolidate with another. This would be hard for any kid, but for a kid with Aspergian social skills?

Argh!!

I can see I need to get to work on this. The next thing I do this morning will be to compose an email to Ben's therapist. Someone has to help him figure out this weekend stuff, fast. I don't know how many more sad phone calls I can take. And as I am trying to climb my way out of this well of pain and fatigue I now dwell in, I need to try to fix this fast. Because each time he asks me for help and I have to say no, I get a little sicker.

Today, at least, he's going to the beach. Sea-gods (or lake-gods, more likely), be kind to my boy! Let him have some joy and some fun. And maybe, if he does not find a friend today, he'll find some cool fish or crabs to observe. Ben has always loved poking around for those little constituents of the shallow waters.

A Room of His Own

We saw him. For two-and-a-half beautiful hours. I was so frightened of what might come of it, I shivered halfway to Connecticut.

The drive took forever. We sat for an hour around Worcester, trying to crawl our way out of Massachusetts.  I dug in my purse for Ativan, but came up empty. The reason being, I am on a new med to combat my fibromyalgia symptoms -- severe pain all over the place, fatigue, and sleeplessness are the most confounding of the lot -- and I have no idea whether my as-needed anxiety drugs will kill me if taken jointly with Elavil.

So I removed the temptation before we left home.

We arrived half an hour late. Benjy was waiting for us in his therapist's office. His back was to the door, his head bent over some object he was fiddling with.

"Ben?" I said tentatively.

"Mom?" he said shyly.

"Can you stand up so I can hug you?"

He did, smiling. And for ten or twelve seconds I had the feel of his warm body, the itch of his wiry hair against my cheek, all to myself.

For those ten or twelve seconds he was mine.

Saskia and Lars hugged him too. We remarked upon his incredible good looks: he has lost most of the weight put on by his cocktail of medications. He is fit and tan. He still looks dazed, but that is what Abilify plus Lexapro plus Tenex will do to a person.

He is also very much alive. That is the other thing Abilify plus Lexapro plus Tenex can do.

We sat and talked with the therapist for half an hour, and then Ben and Saskia and Lars played some Frisbee. There was one close call -- a moment of frustration and self-loathing on Benjy's part when he did not perform at Frisbee the way he'd hoped to, in front of his family -- but I figured lunch would avert the storm, and it did. When Ben needs to refuel he needs to refuel.

We went to the pizza joint down the street and ate al fresco. It was lovely, being there all four of us together. Benjy seemed quiet, but content to just be in the moment. There was no restless seeking, no yearning for the Wide World to be his own, to fill the aching void inside him.

I'm not sure that void exists anymore.

I said to him, "I think this was a good choice we made for you, don't you?"

And he nodded and smiled and said, "Yes."

We asked him what he would do when we had to leave, and he said, "Just relax."

I asked him what that meant, and he said,  "You know, just hang out with my friends."

My friends. I am almost weeping even now, two days later, when I think of that. so little to ask for. Saskia does that all the time. Hangs with her friends. Lars and I do, too.

Benjy never really had that, and now he does. He seemed emotionally flat the other day, but also content. Quiet but comfortable with his new life. As Lars reminds me,  flat and quiet are Ben's baseline. Comfortable and content are not.

Readers, this is something to rejoice. When I held him again for another twelve seconds, laid my cheek against his curly head and told him I loved him and would miss him, I felt his absence like a gaping wound in my chest. Right where I suppose my heart beats.

He is in some ways already gone, even though we will see him again in two weeks, and for more hours. He has found his place, a home that works for him. It is not the same home the rest of us inhabit.

I am trying only to be glad about that, to think of my boy and not myself. This is my crowning achievement.

Think about it: my crowning achievement as Ben's mother has been to find him another home. Writing that just now nearly killed me. It defies logic. It is not supposed to be the way of things. Not at all. Not in families like ours.

That is our heartbreaking truth. If our child is to be okay, to live and live an independent and productive life, he must move henceforth on a trajectory away from here. From us. Most every child does that, but not so often at 13.

Yet, mental illness defies the "normal" way of things. There is nothing to understand about unquiet minds, not really. Not in the same way that numbers or landmasses can be calculated and mapped and darkness can be penetrated by light. You can only learn how to tiptoe softly around the landmines, locate the best and most reliable paths and then cross your fingers -- because invariably, from time to time, you will tread in the wrong place.

As sad as I feel about it, I think we have trod in the right place this time. Ben's new home is working for him in ways you would not believe. He is doing things we never dreamed he would -- and in one short month. I'll write more about these wonderful accomplishments soon -- small steps toward a state of functionality in this World we all have to function in if we possibly can.

All in all it was a wonderful visit, except it left me with a horrible migraine -- probably the result of my own emotional turmoil.

I am trying so hard not to blame myself that it has come to this. And to overcome the physical and emotional dysfunctions that eleven years of living on high alert have wrought in me.

I am trying to be happy for Ben, that finally he has found his place on this earth, that he is happy and successful, and that he is able to be those things without me by his side.

And I am trying to quell the fires in my head. Migraines suck. This is my first one, and it's a doozy. Saskia knows all about them, and she's given me some pointers. Tonight we will be with my brother and sister-in-law and their family, which I think will be healing in itself.

Count Down

In two short days I will see my boy. My young man. Less than 48 hours.

Oh, I can barely wait.

I will report back on the visit. We only get three hours total, which won't nearly be enough. But at least I'll get to feel his hugs and see his green eyes and listen to him tell us about his new life. I bet I will even  see some smiles.

I feel like I did when I was a little girl waiting for something special to happen, and the wait was unbearable.

Benjy Update. And Me Update.

He has been at his new school for almost two weeks. Most evenings we talk. If we do not it's usually because he's busy and he's OK. I am beginning to learn the art of walking past his empty room and not catching my breath.

All these gasps, as if he just disappeared from where I was expecting him to be.

This school is a beautiful place. The staff there are beyond belief. Two cats named Clyde and Cleo live at the farm on the premises. Not to mention horses, sheep, chickens, and a little bunny with a sad laboratory history who has found his safe, forever home.

Yesterday, Benjy got to feed and water the chickens. For some reason that lies completely beyond my imaginative ken, he really likes chickens.

Yesterday there was no visit to the sheep, but that was OK. It is very likely there was a horse-kiss or two, though. Benjy is learning the pleasure of horse-kisses, which are one of the greatest things a person can experience in this world. This may be true of the next world too, if one exists. In case one does, I sincerely hope there are horses there.

The school part of school is fine at this beautiful place. Those are more or less Benjy's words. I do not believe I have heard the words "school" and "fine" is succession in quite some time. It helps that there are two bunnies in his classroom (well, one in, one just outside, because, as I have mentioned before, if the two bunnies consorted with each other there would soon be six or eight or ten of them, which might be a distraction). Bunny-time is a given. I would imagine holding a bunny to your heart when your heart hurts is akin to holding a cat there (but without the humming motor). A glorious comfort.

We will see Ben in a little more than two weeks. He is marking the days off on the Lolcats calendar I sent him. It took a lot of looking to find a 2013 Lolcats calendar, let me tell you, and when I did it was 75% off.

Double score!
I am also counting the days. We all are. And in the meantime I am focusing on the rest of us -- and most importantly, on me. That is a novelty. But man, do I need it.

You thought I was sane, didn't you? It turns out I am most definitely not. My logic is intact, don't get me wrong. I live in the same world you do, more or less (no people or places only I can see). But suddenly there are no daily fires to put out. There is beginning to be regularity in my life. I can make and keep appointments. I am not living with the constant fear of crisis.

And I have no idea what to do with myself. With the quietude. With my own grief, my sense of loss. This new expansiveness scares me. Literally.

I have to relearn how to be a "normal" adult, living a "normal" life. (I know, there's no such thing. But there may be degrees of normalcy. Of "proper adjustment." I have forgotten all about that zone, and how you live in it.)

Now that I'm not fueled by fear and adrenaline (hey, that adrenaline is some major stuff) I can look into what else is inside me. What I see in there is a whole lot of broken stuff.

So now comes the fixing. I have good people on my side, too many to list here with hands not so co-operative this morning. I know will get there.

I wonder if a bunny would help?

"Benjy, Awake" is Live on Literarymama.com

The first time I ever wrote about the boy I decided to call "Benjy" was in 2009, I think. He was still so little, and already sad.

What happened was this. It took months and months of writing, and months more of editing. It took a while to find it the right home. So many earnest apologies from editors who loved it but did not quite know what to do with it.

Then I discovered the journal I should have tried first: Literary Mama. And I found "Benjy, Awake," the perfect home.

It's getting a lot of Twitter and Facebook love. (Don't get excited, Readers. It's all relative. But if you want to help it go viral I won't stand in your way. This is the kind of stuff people need to talk about -- when they're done discussing any pressing Kardashian updates.)

So, yeah. Share our story. Get people talking about the social, political, and very personal issue that is childhood mental illness. And then go drink a vanilla soy latte and enjoy my virtual hug.

My Day Has Come, Just Like Dad Said it Would

My heart is very full tonight, full of all kinds of feelings. Joy. Confusion. Warmth. A little bit of angst. Tonight is a good night, actually. And I think that lots of feelings bumping up against each other in your chest is better than no feelings in your chest at all. I know it is.

Have you heard of Wilfred Owen? He was a WWI poet, a Brit. He was barely grown-up when he died in the mud in France. He kept a journal on him in the trenches before he died, and in that journal he wrote the most wonderful poems.

Wilfred Owen knew a thing or two about feelings. This is his poem "Insensibility." I hope you don't mind me posting the entire thing...

Insensibility   I Happy are men who yet before they are killed Can let their veins run cold. Whom no compassion fleers Or makes their feet Sore on the alleys cobbled with their brothers. The front line withers, But they are troops who fade, not flowers For poets’ tearful fooling: Men, gaps for filling: Losses, who might have fought Longer; but no one bothers.   II And some cease feeling Even themselves or for themselves. Dullness best solves The tease and doubt of shelling, And Chance’s strange arithmetic Comes simpler than the reckoning of their shilling. They keep no check on armies’ decimation.   III Happy are these who lose imagination: They have enough to carry with ammunition. Their spirit drags no pack. Their old wounds, save with cold, can not more ache. Having seen all things red, Their eyes are rid Of the hurt of the colour of blood forever. And terror’s first constriction over, Their hearts remain small-drawn. Their senses in some scorching cautery of battle Now long since ironed, Can laugh among the dying, unconcerned.   IV Happy the soldier home, with not a notion How somewhere, every dawn, some men attack, And many sighs are drained. Happy the lad whose mind was never trained: His days are worth forgetting more than not. He sings along the march Which we march taciturn, because of dusk, The long, forlorn, relentless trend From larger day to huger night.   V We wise, who with a thought besmirch Blood over all our soul, How should we see our task But through his blunt and lashless eyes? Alive, he is not vital overmuch; Dying, not mortal overmuch; Nor sad, nor proud, Nor curious at all. He cannot tell Old men’s placidity from his.   VI But cursed are dullards whom no cannon stuns, That they should be as stones; Wretched are they, and mean With paucity that never was simplicity. By choice they made themselves immune To pity and whatever moans in man Before the last sea and the hapless stars; Whatever mourns when many leave these shores; Whatever shares The eternal reciprocity of tears.

I think Shylock means the same thing when he says this, upon hearing that his daughter Jessica traded the ring his dead wife Leah gave him for a monkey:

"I would not have given it for a wilderness of monkeys."

A wilderness of monkeys. Yes.

Sometimes I think what makes Benjy so sick is trying to locate the ring within the wilderness of monkeys. How do you figure out the value of things when your world is more fixated on capuchins and cappuccinos than on pain and joy and hunger and beauty and all the various, mixed up aspects of human experience? When money trumps everything, and there are little bitty burnt-up five-year-old girls living down the hall from you in the psych ward and you can't do anything about it?

My father used to say to me, back when I was a forlorn girl, "Your day will come." I have made this remark to Benjy on occasion, but of course he does not believe it. I didn't, either.

But funnily enough, my day has come.  I had thought it came years ago. When I was an ambitious grad student, the type of overachiever I admire but no longer really comprehend.

These days, if I manage to take a shower and cross three items off my to-do list I have achieved at quite a high level.

I have no problem with this. And also, I realize that my day hadn't come at all back when I was winning fellowships and securing grants and writing books. It's only just come now, in the thick of middle age.  Just think: I am peaking at fifty, right when I've reached the apex of underachievement. (Yes, that sentence is of dubious logic. So what?)

You know why this is my time? Because whether or not I shower every day, whether I sit and stare into space or work all day as an ersatz chauffeur or clean the kitchen four times or write an amazing essay or blog or don't blog, I have people all over the world -- folks who live right nearby and folks who live so far away their seasons are all topsy-turvy -- who care about me. I have come into a very big inheritance, and it has to do with feelings and people and connections and the beauty of kind gestures and of brief emails that say, "Hey, I've got your back."
It has to do with generosities born of swelling empathy and a desire to touch people's lives. (***You know who you are. I don't, but I hope you realize the impact of what you did today. What can I say, but THANK YOU? Thank you for reminding me that life and family and friends and community are all gifts.***) 

You know, people have gathered round our small  family these past years -- each year more difficult than the previous one -- and offered us succor, and love, and made us laugh. Proffered rides (and vacations) to Saskia when we couldn't. Cooked us meals. Given to us in the ways that made most sense to them. (All ways make sense to us.)

Some of these people we have been lucky enough to have in our lives are paid for what they do, and some are not. No matter. All of you do what you do with open and full hearts.

My happiest days, apart from the days when my entire family is content and thriving, are the days when I am able to give back. I do what I can, when I can. In ways that make sense to me and to those to whom I pay it forward.

Wilfred Owen had it right. I think Shylock did, too. It's better to feel richly, even when it hurts, than to feel nothing. You don't trade the ring your dead mother gave to your suffering father for a monkey.

That is just not cool.

The good news is, this world is full of folks who would never do that. We don't hear about them much; they do their good work quietly. But they're out there. I know, because a whole lot of them have touched our lives.

How lucky we are!

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.

How The Hell Am I Going To Write This Post?

This one will require bullets (of the punctuational kind, of course). Words like these hurt less when they are orderly and tight and less like a flood surge than they would like to be.**

** So much for the orderly and tight bullets.

Benjy

• Was doing so much better emotionally until last Tuesday. But his cognitive and memory losses continue, maybe worsen.
• Engaged me in a (slightly confused) conversation about the ugly Westboro Baptist Church, Louis Theroux, and freedom of speech in America and Germany, on our Monday ride to MGH. Almost like the old Benjy.
•  Tuesday he could not lift his head and face the world. Wild despair all day long. A few tepid upward swings to a place of resignation.
• Tuesday evening Lars and I took him (yet again) to MGH, where he was presented to the monthly neurology conference because he is an "interesting" (and perplexing) case. We hoped this would get him some help.
• Tuesday evening a twelve-year-old boy (thirteen in a little over a week!) became a profile in courage. He allowed himself to be made vulnerable in front of a room full of neurologists he did not know (except for one). It was excruciating for me to watch. I can only imagine how it felt to him, because his brain no longer works the way it should and he knows this. So did everyone in that room.
•  Wednesday the despair waxed large and thick and deep. All week school was an agony. And why wouldn't it be?
• Thursday morning he could not name the furniture in his bedroom. I asked him to get something off his night table, and he asked if that was the thing with his computer on it. When I said that was his desk, he wondered if the night table, then, was that thing with all the drawers. I informed him that was his dresser, and he could not invoke the process of elimination to identify his night table so I had to describe its color and what sat upon its surface. Then he knew.
• Thursday after school he told me he does not want to live the life he is living. That he does not want to live in this world at all. I have heard this many times before, but not in the past eighteen months. I am afraid to kill myself, he confessed, but I want a break from this life.
• Thursday evening he asked to go back to the hospital. I called his psychiatrist and she deferred to my judgment. I am an old pro at this now, and know when he needs it and just how to make it happen. We decided to give it another day and then make a decision.
• Thursday evening his neurologist called to discuss the findings of the conference. They are certain he does not have a degenerative brain disease. Non of those prion horrors I urged you not to Google in a recent post. Thank. You. World.
• However, here is what they think. My boy is so very mentally ill -- there is so MUCH dysfunction for his poor brain to deal with, that his brain is partially shutting down. Sort of a short-circuiting kind of thing. Because who has room for memory and word recall and other basic cognitive functions when they are swollen to bursting with anxiety and despair and mania and psychosis and all those other rogue impulses?
• I did not tell Benjy this. I told some other people. And like I do all the time now (see below), I wept.
• Friday morning the sun rose intensely. Benjy faced it. He sat in front of his SAD light and ate his waffle and got himself together (with a lot of help from me) and grabbed his tennis racket and went off to school. Small step, huge triumph
• Friday afternoon he came home from school and did not collapse. He had an invitation from a friend for Saturday. He had something to look forward to.
• Friday evening the MOST ASTONISHING THING happened. His sweet friend, L (another Aspie, but FAR less impaired than Benjy and a public school student here in town) invited Benjy to attend the middle school dance with him. Ben called me up to his room and informed me he was going.
• My heart stopped. I think you will know why.
• Um, I said, do you really think this is a good idea? There will be loud music. Flashing lights. Darkness and crowds and probably some mean kids and possibly some illicit behaviors. (And so much worse, I was convinced.)
• I texted Saskia, who was at a party. "He's going to the dance with L!!!! I can't dissuade him!!!!"
• Saskia texted back. "That will not end well. I could barely function at those things. If I come home and hang out with him will he change his mind?"
• He would not. I was beyond terrified, If you have read this blog for a while you will know why. But he wanted the chance to be regular kid for once, and I had to let him do it.
• Saskia instructed me on how he should dress. "Do NOT dress him up!" (Duh.) Make sure his pants fit. Clean shirt. Deodorant. Do we have any cologne?"
• Oh, Geez.
• "OK then, use a little of Dad's aftershave. Just a little."
• That made me laugh. When I suggested it to Ben he was afraid it might poison him if he licked his cheek. I assured him it wouldn't. I couldn't find it anyway (Lars? Where the heck do you KEEP that stuff?) and his Axe deodorant (which he NEVER wears as far as I can tell) made him smell good.
• He asked me if we could buy an Orabrush so he could brush his tongue and avoid bad breath. "90% of bad-breath germs are located on the tongue" he told me.
• Oh, Geez.
• And then, Readers, after making sure he looked fine, and picking up Saskia and her best friend so THEY could check him out and also instruct him on what to do and what not to do, Lars and I picked up his friend L and drove the two of them to the dance. He stared at the giggling, joking, CONFIDENT middle school girls infesting the front of the school and took on a decided deer-in-headlights look. Then he drew a deep breath and followed L out of the car.
• "Drive away, Lars," I said. "Quick. And don't look." I simply could not watch him walk into that school, my beautiful boy with his over-medicated gait, his glazed but lovely green eyes.
• He lasted an hour. YES!!!! And it was fine, apparently. Then he and L went back to L's house and killed zombies (virtually, folks, virtually) for another hour.
• Everyone went to bed happy. It has been a loooong time since that has happened.

Me

Your patience is wearing thin so I'll make this short.

• Sick on and off since November.
• Really REALLY sick starting last Friday. Severe musculo-skeletal pain, insomnia (up for good every night until Tuesday night by 3 a.m. because it just hurt too damn much to lie in my bed), headache, fiery (but not swollen) glands, fatigue, unsteadiness. 
• Monday I went to the doctor. "Yep," she said, "something is not right here." She ordered a battery of blood tests.
• I spent WAAAY too much time on WebMD.
• Diagnosed myself with either fibromyalgia, MS, Sjogren's disorder or some other autoimmune disease. And in my darkest moments, the cancer I have feared ever since my sister died of it in 1996.
• Tuesday I developed some scary neurological symptoms. Scary.
• Learned I do not have cancer but I do have a serious vitamin B12 deficiency. Believe it or not that can make you REALLY sick. Luckily mine was caught before my face was paralyzed. I am not joking.
• Started high-dose supplements. Slept through the night Tuesday.
• Feeling MUCH better as I write this.
• But Readers, I learned that B12 deficiency can cause depression and personality changes. i think the entire world but me had noticed I was depressed and bitchy (not my usual way of being). I realized I WAS depressed and bitchy when started crying three or four times a day, and when I thought back to my interactions with people over the past month.
• (Thank god I still have friends.)

And now, Readers, I have to work on me as well as Benjy.  I am learning how to take care of myself. It's not easy for me. The hardest thing about this life we are living is that we do not know, from one day to the next, what is going to happen. From one HOUR to the next sometimes. But I finally emerged from my hole and told my friends what's been happening over the past weeks, and my friends are coming to the rescue.

We may not have much money (understatement of the year) or luck (bigger understatement), but we super-rich in family and friends. We are the one-percent in that most important area...and I would not trade that for anything.

The only trade I would make is for my son. For his happiness and health, for the gift of not having to simply agree with him when he tells me life is not fair, for a break from the anguish of watching my child suffer (and for a break for HIM from that suffering) I would trade almost anything. My left hand (that's the important one). My eyes. My legs. Whatever.

But today is another sunny day. L is coming here to hang with Benjy today, and later we are going to my brother and sister-in-law's for a cookout. So it is shaping up to be a good one.

Yeah!

Little Darlin', It's Been a Long, Cold, Lonely Winter...

I think spring is finally here.

Benjy found some crocuses in our yard last week. Brave little pale-purple blossoms, poked out of the cold ground. That was one thing.

We have been waking to bird-song. That is another.

The sun is beaming today, a great big solar grin. That makes for a good day around here.

I hope the winter is behind us. That was a bad winter for this boy and his mother. A winter of hospitals and scary medical tests and scary symptoms like memory loss and loss of things he once knew. Things he learned in kindergarten.

That was a winter of other losses. Losses of friends and bodily control and dignity.

It was also a winter of gains, but not good ones. Weight gain, for example (hello, Abilify!).

But the sun is here, and so is a new medication, Lamictal, that seems to help. He has not developed a fatal rash, and he has not succumbed to despair. We've seen no mania in the past couple of weeks. Overall, he seems brighter. Like the enormous weight he has carried on his back for so many years has lightened just a bit.

He still has his obsessions. Right now it's tennis and basketball. That alone is something to celebrate: it's not video games, not guns, not paintball or bows and arrows.

The sun is coming, but it's not all better. His memory does not really work. In the space of two hours he completely forgot an encounter he had with the school nurse last week, which included a physical exam. Two hours later he simply could not recall meeting with her, in spite of the fact that they conversed about which ankle was giving him trouble and the bite marks on his lip.

He is still having urinary accidents. (We have an appointment with urology next week.)

According to his recent neuropsychological evaluation he has lost skills, lost knowledge. His functionality is not terribly good.

Right now, the primary task at hand is to determine whether the mild psychotic symptoms he's having are secondary to bipolar disorder (yes, severe depression can cause psychosis) or a primary psychiatric illness (as in, early stages of schizophrenia). We are hoping beyond hope it's the former. That would be the less shitty of the two options.

Oh, and his neurologist is still on the case. Just in case there is some rare neurological issue she's overlooked. (I guess that memory loss last week freaked her out. I know it freaked me out.) So next week she is presenting him at some sort of conference of all her neurology colleagues at MGH. I'll have to trot him out to be poked and prodded (metaphorically, at least) in front of the whole department, and then they will discuss the case (without us present, thank goodness!).

I know this will be a hard thing for him. I only agreed to it because we are desperate for answers, and this seems the best way to get some. If the doctors at Mass General can't figure this out, then who the hell can?

So there it is. I'm trying to hang onto the good stuff. He's happier than I've seen him in a long while. I think the new med is going to help, and he's getting a dose increase tomorrow.

Little Darlin', here comes the sun.

Small Pleasures

It's been so long since I've blogged I've almost forgotten how to blog (not really). I don't know why I've been away. I guess I am feeling very FULL right now. Full of emotion, of stress, and of this shimmery, effusive love for the pieces of my life that fit. My kids. Lars. My parents, my brother and sister-in-law. My nieces and nephews. My writing. My friends.

I promised I would tell you about the results of the neuropsych. I will, but not now. Right now I am sitting with my boy on the no-longer-butterscotch-colored couch, watching Family Guy. (I know, Mother of the Year, right here. Thank god all the jokes go right over his adorable Aspergian head.) He is eating the Steakums sandwich I just made him. (Is that stuff even FOOD? It's his new thing.)

And I am just feeling happy to have him with me. Grateful for small pleasures. I don't take anything for granted anymore.

You know what else I am grateful for? You guys. The people who read this blog. Who sometimes reach out and let me know you're there. And who sometimes don't, but I can feel you there, anyway. You probably don't know what that means to me, that you have our backs. It is an indescribable feeling. It is wonderful.

Thank you. And now back to our incredibly vulgar television programming.

((hugs))

Are You Feeling Brave?

Of course you are -- you stopped by my blog!

I owe you an update, so here it is:

1. All neuro/medical tests (i.e. MRI, EEG, extensive bloodwork) came back normal.

2. In theory, we celebrated. In praxis, not so much. Because we continue to teeter on the edge of the abyss -- and we continue to wait for an answer. We are dumb or naive enough to keep expecting one.

3. I researched prion diseases at the macabre (but well-intentioned) suggestion of a friend. This led to alternating periods of evil dreams and wakefulness. All. Night. Long. (If you were very, very brave, Readers, you could Google prion diseases too. The worst of the lot are Kuru and Fatal Familial Insomnia, and if you read about them you would be up all night worrying you have the latter -- and being thankful you are not a cannibal so you can't get the former. These are the stuff of nightmares.)

4. Benjy's neurologist promised me he does not have Creutzfeldt-Jakob disease (I guess, given the other members of the family, you would have to call that the "good" prion disease), and proceeded to hand us off to psychiatry. It kind of felt like coming home -- in a pathetic sort of way.

5. Benjy's mental state has become such a wide, dark sea of sorrow that I fear, every day, he will slip under and I won't be able to pull him back up. I realized the other day that a sadness like this is not sustainable over a lifetime. And once again I am afraid we will not get to keep him if we can't figure this goddamn illness out.

6. The new psychiatrist prescribed a drug called Lamictal to address the bipolar disorder, particularly the overweening depression. She said, "A lot of people do well on this drug. There's only one downside: it can give you a rash. But this is not just any rash -- this rash can kill you."

7. Shit.

8.  I Googled Stevens-Johnson Syndrome (that's what a rash is called when it's a killer rash).

9. SHIT. (Warning: Wikipedia includes photos, which you do NOT want to look at. Trust me.)

10.  I slouched around and practiced avoidance for five days. Then I called Ben's PCP, who has been doctor to both my kids since babyhood. I figured she could help me decide which crappy path to take: Should I treat the depression that could kill him with a drug that could kill him? Or should I not? She explained to me that most or all of the class of drugs used to treat mood disorders can cause a Stevens-Johnson rash, so I really don't have a choice in that regard. She also told me she has several patients on Lamictal, and that they are all doing fine. The odds are low, she said, and Ben is suffering. Do a skin check every day, and if you see a rash, bring him in.

11. I decided to start him tomorrow. I am scared, but oddly enough  I am also brave. Simultaneously.

12. In the hopes that there may be some therapeutic benefit to improving his diet, I got referrals to "feeding groups" at Mass General and Children's Hospitals. These are practices within GI/Nutrition departments that work with kids who have food aversions, food anxieties, stuff like that. It has been impossible to feed Benjy properly his whole life, because of these kinds of issues. When he was younger (well, until he started Abilify), he was quite underweight, because there was very little I could induce him to eat. Now he eats plenty, but it is all TOXIC sugar, simple carbs, processed junk food. I know you are raising your metaphorical eyebrows at me. I know it should be simple: just don't buy that stuff. Well, I've tried that. It doesn't work. and these days he is RAVENOUS all the time, because his Abilify is like my Risperdal was. It's fucking with his appetite and metabolism and hijacking his body.

13. But I saved the best for last. (No irony here, peeps. You can read on without fear.) Today I wrote, for the first time in a couple of weeks. I'm not sure how I managed it but I did. I worked on an essay about me -- not about Benjy, not about disability -- and it felt GREAT.

And now I'm returning to my old coda, the one with which I closed most of my posts in the early days of this blog:

We take things one day at a time around here. And we shall see what tomorrow brings.

Neuropsych

Benjy's neuropsychological evaluation is happening at 9 this morning. I was just reading over the one from three years ago. At the time we were fairly distressed over the findings -- super high cognitive functioning in some areas, borderline something-or-other (intellectual disability, perhaps?) in others. These weird, weird spikes and valleys, indicative of impressive intelligence and severe learning disabilities. Oh, and the anxiety, isolation, and sadness. They were in that report, too.

He apparently talked to the psychologist about things he really cared about: Greek mythology, sketching, playing the violin.

God, that makes me want to weep.

Because I do not think the conversation will go that way today. I don't think he has access to anything he used to care about. I think he spends much of his days now in an altered mental state. I saw it yesterday at Supercuts: he sitting in that chair looking like a boy I never met, not only because of his Abilify-induced weight gain but because he looked sick, his eyes looked funny.

I texted my mom: Mom, he looks sick. His eyes don't look right. I don't know what to do.

She did not know what to do, either.

His eyelids drooped in this odd way (I have seen it once or twice before in the past couple of weeks). His eyes themselves looked almost clouded. His entire face registered a kind of loss of sensibility, although unlike during the petit mal seizure I witnessed a week ago, he did seem to maintain some kind of consciousness. I thought I saw him respond to remarks by the hair cutter but I'm not totally sure. I tried to grant him the dignity of a little distance, which at twelve he deserves. So I stood anxiously over by the seating area, but I did not take my eyes off him except to text my mom.

Interestingly, he came back to me as we were leaving Supercuts. Eyes normal, eyelids properly raised. He felt well enough to accompany me to the supermarket, and that was a temporary relief.

However. Today will be a severe test of his mental capacity, his emotional endurance, and my ability to keep myself from crying in a public space (aka the waiting room). Can you imagine what he will feel, when he cannot (as I anticipate) perform any (or many) of the tasks the psychologist sets before him? When he is forced to acknowledge that he is losing his ability to think, to do things he used to do? Oh, this is going to be a hard day!! I don't know where I am going to find the strength to endure it, or where he will, either.

I mean, what can I say to him when he sinks into despair? He is not yet so impaired that he doesn't know he's losing the ability to know certain things. He told me last night he's scared. Who the fuck wouldn't be?
I am scared too. I have never been so scared in my life, ever. Not when I got talked by a friend into skiing (worst decision of my life. SKIING??? Not my sport) and fell off the T-bar at the entry to the expert slope instead of making it up to the slope for beginners, which I'd been headed for. (You can fill in the blanks here.) Not then, and not when I went in to Beth Israel get the results of my genetic testing for the breast cancer gene, and not when I was heading in for surgery to remove my breasts so I'd have half a shot at a full life. Not even a few weeks ago when my toxic reaction to a medication made me think I might be dying.

I am scared and I can't take a Klonopin because then I can't drive Ben to the place to get his testing. I don't think a glass of wine at 7:13 a.m. would be a good idea, either. (I've considered that remedy more than once in the past years though, I will admit.)

All I can do is wake him cheerfully at 7:45, feed him a good breakfast, hold him for a few minutes, and promise him a kick-ass video game when he's done. Whether he lasts one hour or six.

Oh yeah, and McDonald's for lunch. And Swizzle's for frozen yogurt.

What I really wish I could give him is a new life. I would take his in a heartbeat if it meant he could start over. Sadly, that's not how life works. I'm trying really hard to get over that crappy reality.

What a Week

Oh, what a week. Am I still standing? Walking? Barely. I just popped an anxiety pill. I hope it works.

My wonderful parents have been with us since last Sunday. They canceled a long overdue and much deserved vacation in Florida because Benjy was sick and going in the hospital and they felt their place was with him and us.

They NEVER fail to be there for us when we need them. Just like they did not fail my sister and her family over those long four years she fought the cancer that finally killed her. They made that nine-hour drive to Cleveland again and again and again, and in the end my mother just lived there while my dad had to stay home in New York and work. The guilt over that almost destroyed him, but he had to do it.

So they have been here and are planning to go home today until Tuesday. Then they will return in time for Benjy's new MRI, performed under general anesthesia. I feel rather like I did when they left us a week after Saskia was born. I stood in our driveway holding my little bundle and weeping, arm outstretched toward their rolling car. How on earth was I going to bathe and feed that tiny girl, and find the right clothes to dress her in, and soothe her colic, without my mom to help me?

So, it has taken a BLOODY WEEK to get this MRI scheduled. And in the meantime all of Ben's concerning neurological symptoms continue, and maybe worsen. Plus, what they call "absence" seizures have now been noticed, by me and his teacher and his therapeutic mentor. Those are the ones where the person checks out for a few seconds and then magically reanimates. I am scared to death he's going to do that on the stairs and break his neck. Oh, and did I mention the personality changes? Yeah, those too.

Yet, this is not a case where they would look at a child and say, "Off to the Operating Room, NOW!" Are they concerned? Yeah. But we seem to have a little time to sort things out. On;y taking a little time is KILLING my whole family.

The MRI would have been done by now except for some madness involving a sleep study that was done a month ago to rule out apnea. His neurologist was not TOO concerned but checking it out made sense. So Ben and I spent the night at the Massachusetts Eye and Ear Infirmary, across the street from Mass General, and he was all wired up and slept just fine, and at eight in the morning the technician let us go and said the doctor would receive the results in two weeks.

Fast forward to this week. Anesthesiology tells me the imaging cannot be performed until those results are received. Hmm, I think. I guess they never sent them to the neurologist. So I call Mass Eye and Ear and ask for the sleep clinic. At which point I learn two things: the hospital contracted with a company called Sleep Health Centers for its sleep studies, and that Sleep Health Centers (which I learned when forwarded to their line) had abruptly closed up shop ("due to problems beyond their control").

WTF????

Thus began a week of emails and phone calls and frantic searching for those results -- on my part and the part of many others at Mass General. Really, on the first day, when the anesthesiology nurse told me SHE was told there WERE no records -- either they never existed or did not exist now -- I felt this was a Quixotic search. I mean, REALLY?

"Let's just move ahead," I urged her. "How about I bring him in to MGH tonight for a sleep study and then you do the MRI tomorrow?"

No dice. They were gonna find those results if it killed them. But of course, they didn't. Meantime I called in the big gun -- aka my brother-in-law Mike, who is a bankruptcy attorney.

"Mike," I said, trying to hide my UTTER DESPERATION. "What the hell is going on here? Could these records exist? Could they have disposed of everything whrn they knew they were going under?"

Mike looked into it. Found out the name of the court-appointed receiver and and shot him an email on his "client" Benjy's behalf. (I thought that was kind of funny. His client.) But he said, "Don't hold your breath. I doubt he'll write back. And of course so far he hasn't.

Now, try to imagine being the mother of a kid who has always been disabled and is progressively declining in some scary, scary ways. Who knows the doctors need to rule out some really frightening things, including but not limited to a tumor or other structural problem with the brain, some sort of inflammatory process, a degenerative disease. (On the other hand this may all be attributable to a simple seizure disorder and easily treatable with meds. We just don't know yet.)

And imagine you love this kid with the heat of a thousand suns.

And imagine you have to wait. And wait. And wait. For answers. For comfort and relief.

And meantime, your kid's having bad days and slightly less bad days. (I hear he tossed a football at school yesterday. Yay! But last night he totally went off the rails. Boo!)

Well, the good new is, he is having his MRI on Wednesday of school vacation. FINALLY. And his neuropsychological testing the day before. And a psychiatry appointment on the following Friday.

Yeah, it's gonna be a great February break for Ben.

The following week he gets to endure a 72-hour EEG. I am not making this up. We'll go to this place and they'll wire up his head and wrap it in gauze and and send us back home and for the following three days I will try DESPERATELY to keep him from feeling like he is going to die because he is bored. I will probably be forced to buy a new video game every hour on the hour.

But maybe at the end of it all we will have some answers.

There is just one thing that terrifies me. (Well, far more than one thing. But right now.) And that is that he broke down last night, with that growing  restlessness, that desperate seeking (more video games! Please! Can't you just help me??) And the tears, and the thrashing, and the utter, utter despair.

I guess I can be thankful it wasn't an animal taht would save him this time.

I prayed for his meds to kick in and put him to sleep. They did, pretty soon after. Then I went downstairs and did something I have not had to do for over a year. I hid the knives. I just had this creeping dread he might get up while I was asleep and look for them. It was probably an irrational fear. He has not wanted to end his life, or asked me to do it, for more than a year now. But last night I got spooked.

Before I went to bed I asked the Hellacious Hound if he would kindly sleep outside Benjy's door. Just watch over him while he slept. And when I woke up early this morning, my roiling stomach preventing the sleep I'd hoped for, there he was, right outside Benjy's room, a fluffy sentry. Noble hound! You will receive a bounty of cookies today.

So now the question is: what will happen when Ben wakes up? And if what began slowly emerging this week and culminated in that breakdown last night continues today, my big question is: whom do I call for help, neurology or psychiatry?

Because this case is confusing the crap out of me. What everyone thought was psychiatric might be neurologic. Or a combination of both, more likely. So how am I to know what to do?

 Fortunately I have doctor friends who can help me make that decision. All I can really do now is hope we make it through today, and tomorrow, and so on through the end of all these tests. And take as much of my anxiety meds as I can without sleeping through the whole damn week. (Which is really what I would prefer to do.)

And reprise my old mantra, with which I used to close every post when I first started this blog:

Tomorrow is a another day. We'll see what it brings.