My Healing Projects

Happy spring, Readers! And not a moment too soon. :)

I thought I would give you a family update and then hint at some plans I am gestating -- either brilliant or nutso plans, TBD -- to guide me toward greater wellness.

As advertised, here is the update: Life is better. I am not continually struggling against the death-grip of anxiety, trauma, exhaustion, illness, and fear. I say "not continually" because life throws crap at you now and then. Of course. But I (along with Ben, and Lars, and Saskia) have discovered some of those quiet interludes in which healing can begin.

We have figured out what we need to recover, and where we can get it.

For Ben, it is a school in the country. Horses. Sheep. Chickens. Sports of every stripe. Community. Friends. Space from the people who love him most, fought like hell for him, and found (somehow) the strength and wisdom to understand that sometimes love and fight are simply not enough.

You would not believe him if you saw him right now -- even if you only know him from this blog. I miss him like crazy, and I am so proud of him I cry when I tell people about him, or talk to his teacher or house parents. I cry when I see him laugh -- YES! He does that now! -- and when he opens his arms wide to me and says, "Mom, can I hug you? I love you so much."

(I am crying right this very minute, in spite of the fact that at my feet lies the pinnacle of fluffy cuteness, with an exposed belly and an inviting look on his face. The Fluff Therapist in IN.)

For Saskia it is a private arts school where she can devote herself to her singing as well as academics, where there are others as devoted to their arts as she is to hers. And (I hope) sufficient time spent on the butterscotch couch with her old lady, watching Bad TV.

For Lars, it is the becalming of his own, previously unacknowledged anxiety, and a desperately needed respite from the trauma and illness that was grinding the four of us into dust.

For me? Oh, where to begin... Well, I am learning to take care of myself. To pace myself every single day so that my chronic pain and fatigue do not lurch into overdrive. I am learning that it's OK to rest, to NOT be a doer every moment of the day. To not be the first person in the room with a book contract or a kick-ass blog, or a wide fan base. (Fan base???)

I am trying to kick the Mombot out of this house. Out of me. And believe it or not, I am seeing some success.

All that learning and Mombot ass-kicking I'm doing suggests something very, very important: that the chaos, the maelstrom, the shit-storm that had occupied my brain 24/7 for the past 12 years, has finally moved on. Not 100% -- I am WAY too anxious and restless for that. But one of the perks of not trying to figure out, EVERY WAKING MOMENT, how you will keep people alive and not let important things slip through the cracks and remember the names and dosages of a thousand-and-one psych meds, and find a way to do your paid work right so you won't lose the job you desperately want to leave but can't -- one of the perks of that is that you can focus on other stuff, like getting healthy.

So that's what I'm doing -- just like my darling boy does in his school and his home away from home.

And that leads me to my healing projects. I'm only offering a hint right now.

One of them looks like this:

And the other? Kind of like this:

Stay tuned for more on the healing projects...as they grow clearer to me I will share the details of them with you.

And now, Readers, I am so exhausted from writing this post I will have to take a little siesta on the butterscotch couch.

Good night. ;)

How We Talk About Depression and Suicide

Yeah, we. As a culture. As parents. As teachers and grandparents and friends.

Believe me, I've pondered this topic many, many times. Those of you who are old-time readers of this blog know why. How do you say it right? How do you even know what to say?

The first time my younger child uttered those chilling words we all fear and prefer not to repeat in mixed company -- the dead words, as I like to think of them -- he was four years old. Yup. Totally impossible...but it happened, then and many times afterwards. You can read about it here.

You might not have known that pre-schoolers can yearn after death, just like teenagers and middle-agers and elderly folks. What they can't easily do, unless they are totally ignored by the adults in their lives, is pull it off. But they can wait for the day they are big enough, or brave enough, to move ahead with it.

There are a few reasons I've returned to the topic that prompted me to start The Striped Nickel way back in 2011. Not one of them is about my boy, who is now a teen, and who can finally think about LIVING his future rather than snuffing it out.

YES!!!!!

But I've been thinking a lot about death these days. Not because I'm depressed (although at least half the time I am), but because death is all the hell around us.

First of all -- and this is an old, old story but it always makes me cry -- Flanders Field. President Obama was there the other day for a visit. And I was thinking about The Great War and the devastating and beautiful music and poetry that came out of its great brutality and its heaving collective anguish. So that itself made me sad, and then I realized (duh) that WWI ignited one hundred years ago. And that WWII came and went not much later.

I'm not saying it's a BAD thing those days are long past. But I spent most of my life up till now in the 20th century. I was born just about 20 years after the end of the second world war. And I guess I am just getting old.

Then there are all these 21st-century deaths surrounding us.

Death by rogue airplane.
Death by mudslide.
Death by fire.
Death by water.
Oh yeah, and death by totally unnecessary evils, like FUCKING AUTOMATIC WEAPONS in the hands of anyone who feels he might need one while deer hunting. Or people pretending to "stand their ground" while apparently thinking they're just gonna "clean up the streets."

Sorry. Rant over.

This is a really scary, and really hard world. And that brings me back to children and suicide.

Tonight Saskia and I watched a local television program, Chronicle, about a recent cluster of suicides in a neighboring suburb. It's a place pretty much like the one we live in. Affluent, pressured. Nice to look at. Nice to live in if you can find people to connect with. (We have, but not all that many.)

A pretty horrible place to attend high school in.
Our town had ITS cluster of teen suicides between about 2004 and 2006. And these deaths forced a lot of people to think about what the hell is going on in our schools. But not hard enough, apparently, because not all that much has changed.

Sure, we have great suicide prevention programming in town these days, run by a great team, and we have student activists working tirelessly to promote a healthy school atmosphere.

But I hear the talk. I know that kids in our town are always saying things like, "I might as well kill myself if I don't get into Harvard or Yale."

Or, "I don't have time for dinner tonight. If I eat I will not finish my homework until 2 a.m., and it's hard enough to get through the day when I go to bed at the usual time." (Yes, it was my kid who said that, and the usual time is about 1 a.m.)

I know that these high school students have to choose between a little down time after school, a hangout with friends or in front of the TV, maybe some time in the sun, and finishing their CRAZY loads of homework with enough time left over for luxuries. Like food and sleep. I know they stress over what will become of them if they take only two ACCELERATED subjects and the rest merely at HONORS level. And whether not taking as many AP courses as possible will render them unable to attend college and homeless by the time they are thirty.

I know this. It is not news to me. And as sad as I am about three beautiful kids recently lost from the town next door, I am not remotely surprised.

What DID surprise me was how many people interviewed on Chronicle tonight kind of hefted all the responsibility for these tragedies on the kids who took their own lives.

Language like, "That was NOT okay. That was SELFISH. I loved him/her, I miss them, and they made a really bad choice."

Yeah. Damn straight they did. But I'm really not sure suicide is a choice, or that it feels like one to the person who simply cannot figure out a way to keep on living. It is so fucking hard to live in this world I almost can't breathe. And I live in greater Boston, not Syria. You know? I feel RIDICULOUS even saying so, but to me it is true. And to so many others, I assure you.

Getting back to the language of blame: Benjy has never been intentionally selfish. Maybe a little, when he's seriously dysregulated. But he has always loved, and known he was loved. And he has wanted, many, many times, to take his own life. He has even, on the darkest of days for both of us, asked me to help him do it.

I will never, ever say that Benjy made bad choices, that what he felt was "not OK." What he felt was unbearable pain and anguish, and it was not a choice.

Ben did not fail anyone, but a lot of people, a lot of adults and kids alike, failed him.

I hope beyond hope that Lars and I were not among them. Or at least not very often.

What I really wanted to hear from these folks on TV tonight was an acknowledgment that some person or people, and some institution or institutions, failed these terribly sad kids.

They were not bad kids. LOOK at them, for fuck's sake. And I'm sure their parents are not bad either, and are heartbroken in ways I hope most of us will never experience.

Let's just talk honestly about this stuff. You know?

In the Chronicle segment, if you watch it, there's a bit on Needham High School's Own Your Peace/Piece project. It's a cool thing. There's an assembly where kids get to stand up and own their struggles.

Saskia said that last year there was some really raw stuff. Kids talked true. Substance abuse. Cutting. That particular species of despair caused by school-suckage. Whatever.

So you know what? This year the struggles got pwned. They got censored. Or else every student in that school got a lot happier and a lot less tormented. No one talked about the tough stuff. No one talked true.

At least, that is how it appeared to someone who was there. And that person is hugely disappointed in the institutional and adult failings behind this year's Own Your Peace rally.

There's way too much fake talk in this world. Let's fix that, Readers! Let's DO IT!

Something We Can All Do

Readers, next week is Mental Illness Awareness Week.

Were you aware of that?

Would you do something for me? In Benjy's honor? Would you take a few minutes next week to learn something new about psychiatric disorders and the many and diverse people who struggle with them?

Understanding is as important as funding. The brain is elegant and powerful and nebulous. There are still uncharted regions in its hemispheres. We all know less than we think we do about our control centers, I am quite sure of that. Even practitioners with many years of education and clinical experience in the field of mental health are still learning.

And that is such a good thing!

Why some minds are restless or disrupted or unquiet and some aren't is a puzzle doctors and scientists are trying to solve. It's one I ponder all the time, when I look at the face of my dear, darling boy and see pain and dysregulation, then gaze at my beloved girl and see calm and quietude.

I simply don't know. So next week I am going to do some more reading and research. I am going to connect with others who are parenting children like Ben, or who have lived with siblings or parents with mental health disorders. I am going to lend an ear and my thoughts to anyone who needs them.

In case you are interested, this might be a good place to start:

The National Alliance on Mental Illness

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.

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.

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!

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.

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.

Still In

It's a good thing we don't celebrate Christmas, because Benjy will spend at least part of it in the hospital. Just like he did Chanukah. We thought he'd have been sprung by now, but his dysregulation clings tenaciously to him. So every day I drive to the hospital, take him on his school pass, when there is school, and then home for a few hours before driving him back to Unit One.

These days he is home for eight hours a day but sleeps away, his cocktail of meds -- and his mental state -- still in flux.

We had no idea just how unquiet Benjy's mind is, until he burst forth at a meeting with his psychiatrist and case manager and me, and told us so. A chaos of thoughts zigging and zagging through his brain, jibs and jabs of scenes, words, parts of his day. Truncated thoughts of people he loves and people he hates. Songs and video games and notions that are dark and off-kilter.

Then there are the pictures of things. "Messed up," he calls them. A car, bent in the middle, Dali-esque. A pencil curved, not straight and true as pencils in this world are. I ask him if he imagines people in this distorted way.

Yes, he says. I do.

For how long have you? I ask with dread.

Forever.

I wonder how, in his mind's eye, he pictures me. I think I will not ask.

This distorted thinking does not appear to be psychosis in the usual sense. These are not bent cars motoring down Commonwealth Avenue. They are cars recollected in tranquility, as Wordsworth said (but not about cars).

It is the entropy in Benjy's head that makes the world too much for him. That makes school a torture, and video games an oasis (gaming is the only pursuit that seems to quiet the chaos for a while, although his doctor has told me that it may, in a heartbreaking vicious circle, also be exacerbating the problem).

So we will have to wait and see what happens. If the chaos in his head is a feature of mania, then the Lexapro he 's been maxxed out on for a couple of years is making things worse. If it's a matter of OCD, then it will get worse when the Lexapro is reduced. Right now he's down five milligrams and seems to be doing better -- he talked to me, in a lively way, when I picked him up from school on Friday.  Taught me some new stuff. That hasn't happened in eons. And he told me about Hawaii, how it was formed and how it was found. He'd learned it in school just that day. He hadn't learned anything at school for along time, but on Friday, for the first time since last spring at least, the teacher's voice found a point of entry, spoke louder than the rogue thoughts raging in his brain.

Of course, we all have brains prone to restlessness, and pone to occasional disorder. My own dreams, last night, took my breath away with their audacity.

Dogs hanging from trees, my own dream-puppy, whose name I cannot get straight -- Maeve? Maude? Gretchen? -- running away from me, always fleeing, leash trailing, leaving me behind in my desperate, seeking despair. "Come back, Maeve/Maude/Gretchen!" I scream, but she is only a diminishing point of desire, smaller, smaller, and then altogether gone.

I woke up from that one feeling wretched. But in an hour or so I will pick up Benjy; that is my consolation.

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.

When It Rains It Pours!

I always loved that Morton Salt logo: when it rains it pours. What a great pun!

And I often use that hackneyed phrase to describe life here at Chez Delaunay. Because bad things come in threes (or five, or tens, as the case may be). And just when I think I will have to get in my car alone and run away to Big Sur and sit just quietly, like Ferdinand the Bull (remember him?), and gaze at the flowers, or the sea, one of my kids does some beautiful thing that takes my breath away, or my husband tells me he loves me in just the right way, and I think, OK, I'll stay here.

Plus, remember: some Rockin' hermit crabs reside here, as does a Hellacious but quite superlative Hound.

 So I CAN'T go to Big Sur. Not yet.

Anyway, the metaphorical rain storm is my excuse for not blogging recently.

Stuff like: Benjy unable to get to his summer program because of depression/anxiety/general non-functionality, and then, Bam! almost out of the blue, developing severe facial tics that make him look like he's having a seizure.

Saskia catching her monthly respiratory illness, developing a tenacious sinusitis that defies --defies! -- all antibiotic intervention  for five weeks and then foments a severe migraine, which emerges during our first vacation in many years. (I spent seven hours with Saskia in an ER on the Jersey Shore. This is something I can recommend to anyone interested in -- uh -- unusual human specimens.) Saskia felt and looked so damn sick I actually thought she was going to collapse on her walk from the parking garage to Children's Hospital on our visit to neurology -- 10th specialist in the past 1.5 years, I believe? -- the day we got back to Boston.

Six weeks of foot pain for me, and my foot blossoms into a huge thing that my brother R-- thinks looks like a loaf of bread and could suggest a blood clot. Panic ensues and I spend hours having x-rays and ultrasounds to rule out a fracture and a clot, respectively. All negative so I'm off next Monday to visit an orthopedist at one of the four area hospitals I frequent on a regular basis.

But readers, I'm not complaining. Because I just finished a book that makes our lives look like a picnic. It also happens to be a beautifully written, poignant, and, finally, hopeful memoir of parenting a child with mental illness (sound familiar?).

The Boy Who Loved Tornadoes is about Chase, whose illness is quite different from Ben's. Chase has severe, severe psychosis, and his mom, Randi Davenport, is single during the worst of his illness. I do not know how she does it, advocating and caring for Chase and his typical sister, Haley.

But actually, I do.

When people say to me, "I don't know how you do it," I reply,  "You would do it, too. You just do what you have to, because the alternative is simply unacceptable." People have amazing stores of strength and courage, actually. Some folks can stand up to a gunman, to terrorists. Think of those brave people who saved lives, though not their own, by standing up to the 9/11 terrorists over that field in Pennsylvania. I could never, ever have done that, but I have my own strength. Randi Davenport has hers. The 9/11 heroes had theirs. Soldiers, and doctors, and social workers have theirs. Our strengths are of different sorts, but people really are capable of great things, as much as the current social and political discourse seems to belie it.

Last night I took Benjy to see Diary of a Wimpy Kid: Dog Days, and as we walked into the theater he said, "Hey, can we sit apart from each other, in different rows?" And I said, "Really? Because I would quite enjoy laughing with you." And he said, "OK." And when it got really funny, he laid his head on my shoulder and laughed and laughed. After a while he just kept it there, making contact with me in a way I totally loved. And the darkness all around us was its own blessing: it hid his facial grimaces, his rolling eyes and jerking head, and spared him social stress and embarrassment for a whole two hours.

If that weren't enough, Saskia has been positively huggy these days. She keeps waylaying me and holding me tight. She's letting me know that, even if she's fourteen, she needs me and loves me.

What did I do to deserve all this? The good and the bad, I mean. I don't know, and I'm trying not to question it. I think I'm just going to go have a loooong shower.

Good news is, I'm back, and I'll try not to stay away so long next time, even if it's pouring.

I am FLUMMOXED

I would think that after 8, 10, 12 years on the job -- any kind of job -- most people know how to do it. Wouldn't you?

I mean, after a couple months helping my Dad put braces on kids -- that was my summer high school job, "Orthodontic Chair-Side Assistant and Occasional Front-Desk Chair Warmer -- I pretty much had it down. Sure, if some twelve year old had thrown up all over the place while getting an impression done (a classmate of mine once DID throw up in my father's chair but thankfully I was not present) I'd have shrieked and run away, but overall I got the suction, the water sprayer, the bibbing of patients and the handing over of instruments. It was not brain surgery.

And after a month of selling well-heeled women's clothing clothing for well-heeled women* at The Talbot's in downtown Boston -- to impatient businessmen who needed birthday presents for their wives and were willing to devote four minutes and a hundred bucks to the process -- I more or less figured out the cash register and the fake smile. (I did not EVER perfect the folding-and-inserting-in-bag-while-impatient-dude-taps-foot-and-frowns part of the job, however.)

And after, oh, I don't know, three or four years of teaching college English I was pretty good at it. Of course, there were always new courses and new material to master well enough that I remained smarter than my students (this is harder to pull off with graduate students) but overall I learned how to do that job and do it well.

So why the hell haven't I figured out how to be a parent? Because it's going on fifteen years and once again I am simply flummoxed.

Okay, I'm exaggerating. It's only EIGHT years since I've been parent to an off-kilter child (Benjy's mental health issues began at age four). But still.

EIGHT YEARS? I hear you thinking. AND YOU STILL DON'T GET IT?

Well, no. The thing is, I thought Benjy was doing SOOO well. He seemed happy enough, had made some new friends, was (mostly) making it to school. Then there was that dysregulated day in Connecticut I recently blogged about. And then Saskia told me he "doesn't seem right." And then -- because I am impressively inattentive these days -- I realized, retrospectively, that he's been  kind of downcast, and withdrawn, and unsmiling for quite a while. And now, once again, he is begging me to keep him home from school (the Joy School runs a summer program that is school, not camp).

The past two weeks it's been a struggle to get him to go. Now, I can't say I blame him. Go to school in the summer? that's not fair!

But he can't manage camp, and if he doesn't go to school he will literally sit in front of his computer ALL DAY LONG. And if I complain and ask him to do something else he will tell me, bitterly, that there is NOTHING else to do and his life is empty. Then he will suggest some impossibly expensive thing, like buying electronic stuff or inviting a friend to the aquarium, or some impossibly inadvisable thing, like finding a gun shop where he can fondle the Glocks.

So my question is: what do I do? Does this depression mean he needs a med change? More therapy? (We've taken a summer hiatus because he was simply refusing to go.) Should I be calling his psychiatrist or is that over-reacting? I do not know. If he would only talk to me maybe I could figure it out. But he is resolutely close-mouthed. He resists all of my questions, even benign ones. His affect is flat, his face unreadable, except for the sadness there. I cannot reach my boy, and I am at a loss for what to do.

Inevitably, in life, things cycle back. We might think we're done with this or that conflict, but we almost certainly are not. The repressed always returns, as does winter darkness and the full moon. Often there is comfort in these cycles -- thank GOODNESS the days will get longer again in spring, and stone fruits will come back just when we've forgotten their particular species of firm sweetness.

But this return, the return of my off-kilter boy, I find unnerving. And even though depression and anxiety have always waxed and waned around here, they throw me for a loop when they re-emerge.

So here we are again, and not for the last time I am flying by the seat of my pants, as Lars would say.

* English grammar was obviously not on my graduate school curriculum. My German grammar is far, far worse.

Parenting 101

Parenting a child might just be the hardest job on the face of the earth. Okay, it may not rank with those jobs Benjy watches on TV ("The World's Dirtiest Jobs"??) in terms of ickiness  -- although, on the other hand, I think we've all had poop under our fingernails at one point or another -- but man, is it challenging.

Especially if your kid is a moving target.

What you do on Monday when your kid is smiling and functional is completely different than what you will do on Tuesday when she is knocking her head against the wall/searching for knives/Googling the phrase "help I want to die." And chances are, no one will be there to advise you in the midst of the head-banging. You will have to run on instinct. Or pray for divine guidance (although in my experience this route takes too long and is better undertaken in an "emotion recollected in tranquility" sort of mode ;).

I wish someone had published a book on how to REALLY do this job. (I know, there are a million of them out there, but what good are they when things change by the hour?) I would make said book my next writing project except it would take forever to compose because it would be in constant revision. What I mean by this is that my store of parenting knowledge is in constant flux. When Benjy evolves in some new way, my brilliant parenting notions -- for example, oh, you've got to be matter-of-fact when he's curled up in a ball and unresponsive -- are shot to hell. Because all of a sudden, matter-of-factness drives him over to the knife block.

You can read all the parenting books you want, but when the chips are down it's still you and your kid. No one will take that burden, and that privilege, away from you.

I feel somewhat like a deer, always on alert, always listening for some chilling change in the environment -- a new sound, a sudden breeze, a scent. I have to listen, and watch, and sense my environment for changes in Benjy's emotional state. Can I take a few moments and enter receipts into our finance spreadsheet? Can I write a little? Clean the kitchen? Or do I need to be parked right beside Ben on the couch, bodies in contact, to feel if his is clenched, or shaking. To sense if he is going down.

Now, don't get me wrong. I know that parenting is hard for just about anyone. You take a fourteen-year-old girl and her hormones, and you've got a parenting nightmare. Make it a boy and it's double trouble. Homework issues, bullying, weight issues, you name it. It's all a challenge, with or without a disability thrown in.

But you know what? Sometimes we get it gloriously right. Almost every one of us.

It feels great when that happens, even if our trenchant insight is only valid for one hour.

A Story of Ten Fingers

Benjy is such a confounding boy. Just when you think you've got him figured out he goes and does something confusing.

Last night at dinner he was up. Talking up a storm. Hurling trivia questions at us. (I wish I could remember some of them; there were about twenty, in rapid-fire succession, and they were Doozies.) Laughing -- no, dissolving -- over some YouTube silliness involving an animated cat with a large nostril and bad teeth. Saskia laughed with him. so Lars and I joined in.

O, we were happy!

Fast forward to this morning. Benjy cannot, or does not want to, wake up. He is down, down. Just let me sleep, he murmurs. I can't do it. What "it" is, is not clear to me. I let him sleep, call the Joy School to let them know he'll be late.

At 8:30 I draw him a bath and wake him up. Groggily, he slips into the tub. I close the shower curtain so I can get myself ready at the sink and he can have privacy. When I peek in he is lying there, listless. He has not picked up the soap.

"Can you wash?" I ask. Lars always warns me against making things Benjy's choice. "You need to wash now," I correct myself.

Benjy nods but does not pick up the soap. After a minute he says, "why do you think I have these bruises on my legs?"

Bruises, Readers, are something we watch for here at Chez Delaunay, because in past times Benjy has hit himself -- with his fists and other objects -- and caused bruising.

My heart stops. I examine the bruises but they are not symmetrical. There is no method to them. There are only three of them. His legs look like the legs of an 11-year-old boy.

"Did you hit yourself, Ben?" I ask, trying to remain calm.

"No."

"You promise?"

"I do."

"Then it's okay," I tell him, but deep inside I am not sure.

When I return from walking the dog, Benjy is dressed and sitting with Lars at the dining room table. But his hands are still pruney from the bath. I glance at his fingers, and that's when I see it, the first time I've noticed in a couple of months. His ten finger tips are cratered. He's been tearing them up again.

I grab his hands and press them between mine. "Don't pick," I tell him, those two little words swelling with unspoken anguish.

There are days that radiate happiness and peace, and then there are the other days. We take things one day at a time around here, because to a family dealing with mental illness, a day is a lifetime.

Nothing Ventured, Nothing Gained

Those of you who know me personally -- and, I think, other readers of this blog as well -- know that I am a writer. I usually have one or more writing projects going at any given time. Right now I've got a novel and a short story out on submission, and as of this morning I can add to the list a personal essay about parenting a child who wants to die.

I first started this essay last spring, wrestled with it for a few months, and ultimately crafted 9.5K words, every single one of which I loved. My writing group read a couple of drafts, and they loved it, too. But it was really too long for most journals and magazines. So last week I took out the metaphorical machete and slashed 6,000 words. Ouch. But you know what? Now I love it even more. And this morning I submitted it to a major, major women's magazine (circulation 4 gazillion) in the hopes that they will love it, too.


The odds are certainly against me. But the odds always are sucky when you're a writer. Publishing is not for the faint of heart. I've had a good deal of success at it, but far more rejections than acceptances, that's for sure. Yet I have a feeling about this essay. I think it's my best work yet. So if Major, Major, Magazine rejects it, maybe Major Magazine will take it. and if not, there's always Minor Magazine, waiting in the wings.

I think I'm not narcissistic when I say, The Story of Raising Benjy is a story that needs to be told. Did you know that suicide is the third-leading cause of death in young people aged 10-14?. The National Alliance on Mental Illness (www.nami.org) estimates that each year in the U.S., approximately 2,000 children and adolescents complete suicide -- and of course, many thousands more contemplate ending their lives. Although it’s a problem on the rise, there is not much public discussion about children and suicide.

I hope my writing, in this blog and elsewhere, breaks open some of that silence.