Letting it all hang out 

I spoke with Jesse’s fourth grade class today about her OCD and anxiety disorder, her treatment plan, and the meaning of life.

Well… maybe not so much that last part.

Bear with me as I travel a long and winding road to telling you how it went, and let me put the punch line here in case you don’t make it to the end of this blather fest: SPEAK. If you are suffering, speak. Not just out of need and selfishness, but also as a gift to those who love you and share your world, and as an offering to others who suffer like you. Speak, so that they understand you better, so that you aren’t alone. Speak, to break the cycle of silence.

 * * * * * * *

I’ve become rigid in my belief that silence, sidled up alongside a false sense of the need for privacy, is a wellness-killer with respect to mental illness. But if I pay attention, all the messages I’m receiving tell me I’m totally wrong. Privacy and secrecy are the gold standard. Talking about this stuff remains taboo.

A couple months ago, Jesse agreed to be part of a story on childhood issues in an edition of Milwaukee Magazine dedicated to mental health issues. The writer asked me up front: do you want me to change your names?

Why? I asked.

He said something about privacy. I had my answer ready; I had already discussed it with Anthony and Jesse. We’re agreeing to be part of this story to fight stigma, to demonstrate courage for and with our suffering child. How can I tell Jesse I’m not ashamed of her, and how can I teach her not to be ashamed, if we hide her behind a fake name?

I thought it was a done deal until he called me back a few weeks later. He wanted to make sure I was okay with using Jesse’s real name. Yes, I answered. Yes, I have her permission and therefore yes, you have my permission. Remember what I said about stigma?

It was a pleasant, albeit redundant, conversation.

I thought it was a done deal again until the magazine’s editor called me a few days later. He wanted to make sure I was okay with using Jesse’s real name. I repeated myself. He said the lawyers insisted he make sure.

I started to feel a rise of anxiety. “Is there a reason you keep asking the same question? Am I giving you the wrong answer? Is CPS going to come after me for using Jesse’s real name?” No no, he assured me, just making sure.

But all the same, he asked me to send him an email confirming my decision, per the lawyers’ request.

 * * * * * * *

It seems to me that mental health institutions and professionals also encourage a sort of fetish for secrecy. When we were investigating enrolling Jesse in the Rogers outpatient program, we weren’t even allowed to visit the space to see how things operate. Privacy issues for current patients, they said.

On the first day we arrived at the facility — what do I call it? A clinic, a building, an outpatient facility, an institution?  Whatever I choose, it better be euphemistic. God forbid a mental health facility’s signs should actually say something about “mental health” so that I know I’m in the correct place. (I’d actually prefer something along the lines of, “CRAZY NATION, ENTER HERE.” Very clear, and laughing is good therapy, after all.)

Right, so on the first day, we had to sign a massive fine-print document regarding privacy. It read like a national secrets act agreement. I hope they won’t send me to mental-health-industry-Gitmo, and I hope they won’t kick Jesse out of the program, if I happen to write something here that’s considered a violation of one of the 800 non-disclosure provisions in that agreement.

If I weren’t a smug, grumpy, maladjusted human being who ignores social cues, I think all this input would be teaching me that I must seek privacy, that I must hide my family’s dirty little crazy secrets. Tell me about your cancer and your broken bones and your diabetes and your heart disease, but don’t lay your brain problems on me. That’s just… ew.

 * * * * * * *

Jesse has been on shortened days all year at school, but it’s even more truncated now that she’s in this intense OCD/anxiety outpatient program. She only goes to school from 8 to 11, plus she missed almost a full week of school for our intro week at Rogers. Not to mention that she’s been pretty wack-a-doodles all year long. A few weeks ago I started to think Jesse’s classmates might deserve to to be offered a little insight.

I suggested gently to Jesse one day that I could speak with her class about her diagnoses and what’s going on, kind of educate them a little. Jesse didn’t hesitate. “Yeah, that would be great,” she nodded. “They already know about all my inappropriate behaviors, because they see them all the time.”

Good point. Jesse appears to be following my lead in letting it all hang out. I love this girl.

 * * * * * * *

Despite the battle-ax I carry about openness, I was surprised to find that a concrete plan to talk with Jesse’s classmates about her disease unsettled me. I didn’t want to tell them what’s wrong with her. Still, we scheduled the visit for this morning and I crossed yet another little bridge in Jesse’s mental health journey.

I procrastinated vigorously and waited until last night to start preparing. I guess I thought I’d be able to google up something. Surely, some English speaker somewhere on Earth must have done a little presentation to kids about OCD and generalized anxiety, and posted it up on the web for a bum like me to plagiarize.

But no.

Maybe my bad attitude made my search mojo go wrong. In any case, I eventually had to come up with my own little outline and get on with business.

I walked into Jesse’s classroom this morning feeling anxious and fussy, even though I know this particular group of kids pretty well. I visit every couple weeks to do an “Art for Youth” presentation/project with them, and I’ve been on a few field trips. We’re pals, and they’re great about engaging with me and speaking up.

I won’t give you too many nitty gritties about what I blabbed about, but I guess I should record the big strokes.

I likened mental illnesses to other diseases of the body. We used diabetes as the analog. It’s a lifelong condition; kids have a harder time staying in control than more experienced adults; and over time you learn with diligence and hard work how to manage it and stay healthy.

We talked about what anxiety feels like. The kids did a great job of cataloging the ways it makes your body and brain feel really bad. And then I asked them to imagine feeling like that every day, all the time.

I showed the kids Jesse’s drawing of what her anxiety looks like:

IMG_1895

Yes, his name is Shock Lord. He’s a boy. Shock Lord’s arms are made of lightning, and his hair is a cloud filled with lightning. He is Shock Lord because he SHOCKS Jesse all the time. Jesse has explained to me (and I told the kids) that his eyes have been cursed to see things wrong. If he sees a small hill to climb, he thinks it’s a dangerous mountain. If he sees someone walking toward Jesse whom he doesn’t recognize, he thinks the person has knives and guns and wants to kill her. I explained how these fears can fill Jesse’s mind and blind her to what’s going on around her, so that she might appear to ignore a smile and a friendly hello from a friend.

I started seeing light bulbs go on.

We talked about what it means to suffer from Jesse’s style of obsessive thinking — to believe that the intrusive negative thoughts that percolate into your mind, unbidden, are significant and prove that you’re a terrible person. I likened the obsessive process to being trapped in a small cage with a giant TV on one wall, blaring at maximum volume on a station that only shows you things that scare you the most. You don’t have a remote control and you can’t close your eyes.

More light bulbs.

We talked about what compulsions are like — the feeling Jesse experiences, as if heavy rocks are pressing on her heart, and it doesn’t stop unless she lets out the blurted words or engages in the inappropriate behaviors. I showed them her drawing of the compulsive piece of her personality.

It is named, inexplicably, Ricket.

IMG_1896

Ricket is a dog-like creature and sister to Shock Lord. She was misled by a Sith-like character long ago (coincidentally, on Jesse’s birthday) into believing that the things she makes Jesse do are good for people, or maybe will protect Jesse. The claw over her head grabs taboo words and behaviors from around her. Ricket’s brain cavity grew into that large wiggly square shape to absorb the claw. Ricket’s pincer tail holds the blurted words to throw them out into the world.

Huh.

The kids soaked it in. Totally fascinated. Light bulbs left and right.

We talked about what Jesse’s inappropriate behaviors and offensive word blurts “mean.” I said they don’t have a moral meaning — she’s not trying to hurt you or offend you. In fact, she’s ashamed of the behavior; she hates herself for it. So what her behaviors mean is simply this: she is suffering from a mental illness that grownups still haven’t figured out how to treat effectively.

We talked about treatment. Medication to help with the anxiety, along with relaxation and cognitive interventions. I explained how exposure therapy works for the OCD — making her hear and see things that make her anxious, and then making her control her behaviors. I showed them what her competing response looks like. They were shocked, a little freaked out that we would do this to her. I explained habituation. They remained skeptical and expressed an almost protective instinct toward Jesse.

We talked about what the kids could do to help Jesse. This was easy, because they already do it. Most of these kids model great behavior. They’re kind and patient. They encourage Jesse to keep trying. They ignore her when she acts up. They never forget that she’s an ordinary kid under there, just like them.

And in the course of this boring tittle-tattle, these extraordinary human beings (nurtured and led by an extraordinary teacher) became bathed in shining haloes as their comments and questions came at me.

* * * * * * *

Many of their questions reflected a deep compassion, bordering on fear, for Jesse. Will she always have to feel like this? Can her OCD ever go away? Can she get rid of it? One little girl wept.

Some kids seemed to just want her to be in school more. One little fellow repeated back to me her schedule at Rogers, which goes Monday through Thursday. “What does she do on Friday?” he wanted to know. “I hope she’ll be at school,” I answered.

Several kids wisely focused on her anxiety levels. A conversation developed naturally about when she’s least anxious — when she’s drawing, everyone agreed, or playing basketball. They wanted to know what helps her. I was blown away by the practical implications of this — they were searching for ways to guide her.

Stories were shared about Jesse being bullied on the playground. It took me aback, because Jesse doesn’t tell about that stuff. Some kids from another class were kicking and pushing her away one day. Some kids said no to her. A group of boys teased her and asked her to chase them, then made fun of her. Jesse’s own classmates regaled me with stories about how they stood up for her and invited her to play with them. They told me that their teacher taught them their class is a family, so they stick together and they stick up for each other. I made my hands into a heart shape and mimed it beating on the left side of my chest. I couldn’t speak words or I would have cried.

Even now I have no words. You had to be sitting among these little people. The humanity, the compassion, the practical comprehension that overtook them when they were given the chance to understand why Jesse is the way she is right now — it was something glorious and profound.

At the end of our chat, Jesse joined us. She walked in shyly and sat on my lap, and she took questions from the class.

Which in itself is an extraordinary feat. Courage! I would have fallen over in a swoon if she wasn’t squashing my legs with her bony bottom.

The kids peppered her with questions, wise and silly, gentle and diplomatic. Do you like Ricket? Who do you like better, Ricket or Shock Lord? What’s your anxiety level right now? What things do you like to do that help your anxiety be lower?

Interspersed with the questions were the helping hands. Jesse, don’t let Shock Lord tell you bad things, said one sweet boy who spoke with a quiet sense of urgency. Don’t listen to him. A little girl spoke up. I’ll always play with you at recess, Jesse. If anyone says no to you or teases you, you can always find me. A boy chimed in. You can play basketball with me any time, Jesse. I’ll always say yes. The kids started riffing about Jesse’s drawing. They planned a drawing contest between her and another kid.

Finally, the teacher said we could take one last question. Jesse called on a friend whose hand was raised high. “Um, can I give you a hug now, Jesse?”

The class got up and it looked like Jesse would be swarmed. The teacher interceded and lined them up before they crushed her, and Jesse stood at the head of the line. One by one, hug after hug, these beautiful little people passed their love and acceptance to Jesse. It was so much that even Jesse — bastion of self-loathing, fortress of misery and cynicism — couldn’t find a way to cry foul on it.

It took my breath away.

 

 

Look for the helpers

I go to a Rogers Hospital facility four days a week, so it goes without saying that I think of Mr. Rogers all the time now.

?

No no no, it does not go without saying. It’s simply not true. BUT, as my Nick would say dramatically before digging into a story that I’m sure he finds really interesting — in a sort of New Jersey twang that Anthony has taught him, somewhere between stereotyped 70’s mobster and Donald Trump — Lemme  tell ya something.

Friday evening my friend Robin came over with her two boys, twins who were born within a week of Nick. They’re leaving town soon, so we have to fit ten years’ worth of twice-a-year playdates into about 6 weeks. It was just going to be a quick get together, but she blew in with her delightful mom, a rotisserie chicken, a pizza to throw in the oven, and a box of chopped fruit. Also champagne and chilled wine.

I knew exactly what she was doing; she knows we’re suffering. She also has a bag full of detritus to deal with in her own life, but she came here and filled my cup pretty well.

At Rogers, they want the parents of kids in the program to talk about our own needs with each other. And I’m surprised to report that I’m resistant. I don’t really want to talk about it with those parents. We have very different personalities on the face of things, and I’m not sure these hard-core Wisconsinites (Packers gear, every day) will appreciate my TMI attitude and somewhat bawdy sense of humor about our situation and about Jesse’s behaviors.

But Robin pointed out something I don’t really think about, which is simply this: because of my ridiculously open attitude, I have a tremendous amount of emotional support. My family may suffer, but we rarely do it alone. These other parents, however, may be more normal. That is to say, they may feel ashamed and alienated, perhaps even within the scope of their own families. They may not have anyone to really share their suffering with, and they may have a lot of reservations about opening up and receiving support. So talking about it in therapy is important.

That hadn’t occurred to me, big-mouthed and grumpy recipient of much love, support, and encouragement. And so Mr. Rogers comes to mind (even though it hasn’t been a wonderful day in my neighborhood for some time now). We’ve all heard the story. When he was a boy and saw scary stuff on the news, his mom put it in perspective for him:

“My mother would say to me, ‘Look for the helpers. You will always find people who are helping.’ To this day, especially in times of disaster, I remember my mother’s words, and I am always comforted by realizing that there are still so many helpers — so many caring people in this world.”

My family’s travails are hardly newsworthy. Still, even in this infinitesimal space we occupy in the universe, in the teeny tiny disaster that constitutes my family’s current life, there are the helpers all around us.

* * * * * * *

My brother Mark has a wickedly cynical and comic insight into human nature. I can always count on him to make me laugh and cry at the same time. We had a typical far-ranging chat a few days ago, as Jesse and I were driving back from a tough afternoon session at Rogers. Mark regaled me with classic takedowns of a couple members of our family, and I remarked, “I would love to hear how you make fun of me when I’m not in the room.”

Mark answered promptly, “No, we don’t make fun of you. We just worry about you.”

I was a bit taken aback. “You worry about me? Why would you worry about me?”

There was a short pause before he answered, deadpan. “We just worry that Jesse’s sucking the life out of you.”

Mark and I burst out laughing. It was a raucous, bittersweet shared laugh, with much rueful head-shaking. Mark was making it funny, but I also knew he meant it. It was his poetic, comic way of saying, Carla, your family wants you to be well, we want you to take care of yourself. You matter.

Helper.

* * * * * * *

Jesse missed almost a full week of school a couple weeks ago, because we were going to Rogers daily for our initial work-up and orientation. The Friday of that week was her birthday.

Her behavior had been even more off-the-wall than usual before she stopped hitting school. Just nuts. She has disrupted her class frequently and daily this school year with bizarre behaviors and word blurts. She has caused a lot of trouble. These kids know there’s something wrong with her. In fact she’s told them, honestly and frankly, about what she struggles with.

When she returned on the following Monday, a pack of handmade birthday cards from her classmates was waiting for her. She pulled them out of her backpack slowly and deliciously when I picked her up. I could sense her disbelief. She read them to me one by one as we drove home. I was in tears by the fourth card.

We love you! Stay strong and positive! You are one of the best people ever! I hope you have an amazing birthday! I hope you come back soon! You are the dearest friend. You are nice and caring! I hope you have a fantastic day when we get to see you again. The best girl in the world.

Helpers.

* * * * * * *

Jesse and Nick attended the nature preschool operated by the local Audubon center. Jesse was a very challenging little preschooler, but somehow we built strong bonds with a few of the teachers there, amazing women who opened doors in my heart as a parent and allowed me to see Jesse in many different ways than what came naturally to me.

One of these teachers shares a birthday with Jesse. Last summer, after hearing about some of Jesse’s struggles, she reached out and took Jesse for a hike and filled her cup. Just last week she touched base to share love and hope — eight years after she became Jesse’s teacher. Another preschool teacher sent me a note last week as well, full of love and empathy, and reminders of how precious and unique a child Jesse is.

I was reduced to tears, though the feelings welling up were inchoate. Somewhere in the range of gratitude, awe, and relief. I don’t know what I ever did to deserve this kind of support, but I know what Jesse did. She has always walked with her curious eyes wide open, engaged and conscious — which may explain why life terrifies her so much.

But anyway, preschool teachers? Maximum helpers, Mr. Rogers style.

* * * * * * *

Anthony’s colleagues, our friends and acquaintances, Facebook friends, distant family, even total strangers who happen to read my blog posts. Everywhere we turn, there’s someone with an encouraging word — you’re making the right choices, don’t give up, Jesse is amazing — or an offer of practical help, like the family that took Nick home from school at the last minute so I could get Jesse to therapy one day. Life savers. My old college mate Jeanne, who declares that she’s the crappiest friend ever — totally wrong, because I’m the crappiest friend ever — sent me a loving and hope-filled note out of the blue. Mates from around the world chuck my figurative shoulder and lend me an emotional hand day by day. Cup-fillers all.

Just as important are the people who break with stigma to tell me about their own and their children’s struggles with mental illness, their own journeys to wellness, their own reliance on meds and therapy to survive. These aren’t celebrities who get airtime out of their disclosures; they’re just incredibly decent folk who want to help alleviate my family’s distress. I’ve heard from total strangers and I’ve heard from friends I never would have guessed have survived mental illness. The wall of silence makes us feel alone, but it’s a paper wall. Anyone who walks through it is a helper.

* * * * * * *

The problem for people dealing with mental illness is that there’s no news coverage telling Mr. Rogers’ helpers that we have a need. We have only our own voices. When I started writing about this stuff, I thought I was just getting it off my chest. But I’ve since realized that I’m also crying out for help. I’m making my own newsreel, because I don’t have the strength to survive Jesse’s mental illness in silence, by myself. I need to laugh and cry and share and laugh some more about it all, and I need to teach Jesse to do the same. The only alternative is emotional death.

So here’s today’s two cents from Carla, if you’re reading this and you’re suffering: ask for help; then look for the helpers. They are everywhere.

But not in a creepy way.

They’ll come through for you and yours, and they will lift you up. They’re listening, watching, waiting to catch you when you fall. You just have to let them know you need them… and then don’t be too proud to accept what the helpers offer.

I know what you’re reading here is weirdly positive and maudlin for this grumpy girl. Don’t get me wrong. I still think people suck. Humanity is full of blood-sucking not-helpers who get off on others’ suffering and failure.

For instance, there’s the person who overheard me at a party telling someone about Jesse’s OCD and our move to more intensive treatment. She interjected to tell me about a neighbor who’s child has struggled with “that same problem” since childhood, and now she’s in her twenties and it’s been AWFUL. Shakes head to accentuate miserable failed life.

Note to self: not a helper.

So yes, I still think people suck.

But also they don’t.

 

 

OMG CBT AND HRT FOR OCD, WTF??

We have begun intensive therapy in earnest for Jesse’s anxiety and OCD at an outpatient facility of the Rogers hospital system (which formerly would have been known as a mental institution, yeah?). In other words, Jesse has agreed (loosely) to allow us to stick her repeatedly with an emotional cattle prod.

Monday through Thursday, we leave home around 2:00 to travel to Oconomowoc, where we work hard from 3 to 6; we get home around 7 pm. It’s a really long evening, and it screws with our home life and extracurriculars immensely, but so it goes.

I like saying “Oconomowoc” frequently during the drive out. It’s not “AWK-oh-no-MO-awk.” It’s not “OH-ko-NO-mo-wok.” It’s Oh-CAW-numu-WOK,” which does indeed roll off the tongue sensibly once you get used to it.

What? you say I’m engaging in avoidance? No no, I just love Wisconsin names. Waukesha. Sheboygan. Wauwatosa. Kinnickinnic. Winnebago. Manitowoc. Menominee. On and on. What’s not to love? Don’t you love these names too? Do you think it’s okay that I’m talking about this?

What? You say I’m reassurance seeking? Stop, just stop. I think you’re being just a little bit overbearing and anxious about this whole conversation.

What? You say I’m projecting?? Now you’re really upsetting me. STFU.

What? Now you’re calling me infantile and hostile?

… You’re probably right.

* * * * * * *

Last week, Anthony, Jesse and I drove to Oconomowoc and met with the social worker on Jesse’s team for three hours on each of three consecutive days. We had lovely chats in which we went over as many of Jesse’s obsessions and compulsive behaviors as we could think of, as well as all of her expressions of anxiety and hostility. We filled out a host of forms and questionnaires. We were introduced to rudimentary ideas about cognitive behavior therapy, the main tool in the non-pharmaceutical fight against OCD and anxiety disorders. We catalogued all of Jesse behaviors and made a “hierarchy,” from most challenging to least, so we could pick the right ones to start her re-training with.

I challenge any grown up to begin therapy for mental illness like most children have to do it — sit in a room you’ve never  been in before and listen to the people you love and rely on most in the world, the people who know you best and with whom you’ve shared your deepest secrets, disclose just about everything that makes you suck to a total stranger.

Not surprisingly, Jesse was really pissed off.

* * * * * * *

In addition to the obvious extreme anxiety from which she suffers, Jesse seems to be somewhere in a shared zone between OCD and Tourette’s, and maybe her behaviors serve some attention-seeking motives as well. She’s a little messy, as most people are.

Jesse’s tics or compulsive behaviors, or whatever you want to call them, can be extreme: mostly they have to do with all things taboo.  Last summer and fall, issues of sexuality intruded most heavily in her mind and led to word blurts about sex and weird inappropriate physical behaviors. She also threw in a healthy, salty mix of something akin to George Carlin’s seven dirty words.

Then she evolved.

Some time in winter, she read a book at school in which one of the characters used the word “nigger.” Jesse brought the word home and we had intense conversations about the history of slavery and apartheid and inequality in America and the nature of the word, and about the many reasons why we never, ever use the word or say the word, except in some academic sense. She became obsessed with issues of racism and  and white supremacy. Now she blurts the word “nigger”, as well as other bigoted epithets, in all the wrong places and at all the wrong times.

I’m being a little facetious, of course. There’s never a right time or place for that word. As my brother Mark remarked, it’s on the top 5 list of worst words in America. Maybe even number 1. Totally, completely taboo, a word dripping in political and social sin, an evil word.

So of course, it calls to Jesse like a horrific siren song. It fills her head and pops out like a bursting boil, having no moral meaning in her usage except that it’s taboo, serving no purpose that we can discern except to fill her with shock and self-loathing.

This blurting occurs despite the fact that Jesse’s school has a significant minority population, despite the fact that many of her best buddies at school are black, despite the fact that her own mother is half Korean. There’s a really strange disconnect here. It makes no sense.

You can imagine the amount of aggressively negative and punitive feedback Jesse got from Anthony and me when this version of her taboo-blurting developed. We were loud, judgment, and frankly, ugly. We couldn’t bear it.

And still it took us months to realize that our current parenting skills and once-a-week talk therapy are simply inadequate to the task of addressing this problem.

* * * * * * *

Enter Rogers and a whole new bag of acronyms to teach us a whole new bag of tricks. Jesse is now admitted to the intensive outpatient OCD/anxiety program for children and adolescents, known affectionately as IOP OCD AC. The treatment approach for her will rely mainly on the cognitive behavior therapy approach, CBT, as well as a related theoretical model called habit reversal therapy, HRT. Both approaches bring to mind how one might train a dog, only maybe more sophisticated. At its most basic, the patient works on developing self-awareness regarding what triggers bring on negative behaviors, and then engages a “competing response” (the inevitable “CR”) to help block the tics and compulsions.

This sounds easy. It’s not.

Jesse describes the urges she experiences as overpowering. She reports that she tries all the time to control them, and  she simply can’t. She’s a failure, moment to moment. She experiences the urges not as a tingling or a funny feeling, like some OCD patients do. Rather she says it feels like big rocks are pressing on her heart and it’ll explode if she doesn’t follow through on the compulsion. There’s no hint of malingering or make-believe when Jesse finds her way to sharing these little details. There’s just the reality of her suffering.

* * * * * * *

Every day, rain or shine, fun or no, Jesse has to do two basic things as part of her treatment at the IOP OCD AC.

One, Jesse journals her negative compulsive behaviors (with a large assist from adults for now), with the goals of increasing self awareness and tracking progress. We have a wee notebook, and on each page there are three columns: “S” for submit, “R” for resist, and “CR” for competing response. If Jesse gives in to an urge, hashmark under the S; if she fights it off, hashmark under R. Either way, if she engages her competing response (pursing her lips tightly and clasping her hands together), hashmark under CR.

Again, it sounds pretty straightforward, but it’s actually excruciating when tics and compulsions are occurring every few minutes. Writer’s cramp ensues. Also for the first couple days, we weren’t using hashmarks. We were instructed to write down the descriptions of the behaviors. Can you picture how that went? Jesse resists an urge to say the word “ass.” She writes it down under R: “didn’t say ass.” She has effectively come through on her compulsion in a different form, so now she feels an even stronger desire to blurt it and she can’t fight it off.

Fail. We moved quickly to hashmarks.

Two, Jesse does exposure exercises, which basically go like this. She sits down with a timer and engages her competing response. Then I hit her with the cattle prod by presenting her with a trigger that heightens her anxiety. Right now we’re working on a lower-anxiety trigger. Basically, I stare into her eyes and bark something like, “DON’T SAY THE WORD FART. AND DON’T REPLACE IT WITH ANY OTHER WORDS OR BEHAVIORS. FART FART.” And she has  to sit there with her lips clamped, fighting the urge to blurt. She’s supposed to ride the wave of anxiety until it weakens to a place where she experiences it as “low” — until she habituates — or until she gives in. Stop the timer, record the result.

Eventually, we hope, we’ll move to more critical triggers. Show her a photo of two people kissing romantically. She fights back the compulsion to say sexual things or engage in sexual behaviors, through pure will power. Show her a photo of a black face, or of a scene from the deep south in the 60’s, maybe of cops attacking civil rights protestors. She fights back the compulsion to spew racist trash talk.

A strange torture all around.

* * * * * * *

I honestly don’t know how Jesse is hanging on. But she’s this amazing little beast, feral and beautiful and desperate.

On day one at Rogers last week, Jesse told the social worker that her behaviors don’t bother her at all. I pushed back. “Really, Jesse? None if it makes you feel bad?” Nope, she answered. It doesn’t bother me at all. On day two, the social worker wrote down some basic emotion words. Bad. Sad. Angry. Ashamed. Frustrated. She asked Jesse to circle the word that described how she feels about her behavior. Jesse hid her face, resting her cheek on her left forearm. Her scrawny little right hand reached out with a pencil and surreptitiously circled the word “ashamed.”

I felt big rocks pressing on my heart and I thought it might explode.

I don’t want Jesse to be ashamed anymore. It’s time for her to accept that the beast inside her doesn’t define her, any more than cancer or diabetes or MS define a person. Yes, her OCD and anxiety are part of who she is and always will be. Yes, the intrusive thoughts reflect something about her brain. But it’s time for her to comprehend that all the nasty, offensive stuff she does isn’t driven by a moral compass. It’s driven by a disease in her brain.

And the deeper, harsher truth is that it’s time for me to accept and comprehend these things as well. I’m working on it, day by day.

and here we go

I haven’t posted anything since Christmas eve. Just a few days ago I started writing something about spring and plants and some stupid shit, but today I’ve set that vapid nonsense aside for real life. This morning, we finally took the leap and agreed to admit Jesse to an outpatient treatment program for OCD and anxiety, at a local hospital that specializes in treating mental health disorders and illnesses.

I started out wanting to find some sort of support group for kids with OCD and extreme anxiety, to supplement the weekly private therapy sessions we already go to. It turns out, such a support group doesn’t exist in this area. There is, however, a local hospital system, called Rogers, that treats OCD. I spied them out on the internet and learned they have some outpatient programs for kids, and it got me to wondering. It didn’t take long for Anthony and me to acknowledge that the past 12 months have been the worst year of Jesse’s still-short life and our much longer lives. Every day is a struggle, in one way or another. She remains largely friendless, alienated, miserable. Lately she has developed a physical affect, her behaviors increasingly erratic, her eyes dark with misery and fear, her mind distracted almost completely and almost always by whatever lurks inside her. Every single weekday I wonder if I should bother to send her to school. As parents, Anthony and I are emotionally exhausted.

I was shopping at Whole Foods when the Rogers intake person called me back for the initial screening interview, to collect information to determine whether Jesse was a good fit for their program. I tucked my half-full shopping cart near the checkout lanes and sat at the bar in the hip eating area, staring out the store’s front windows. I answered question after question, trying not to cry too obviously or talk too loudly. We went through the laundry list. Does she have issues with cleanliness? Does she have obsessive thoughts about sex? Violence? Religion? Harming people? Is she cruel to animals? What percentage of her time do you think she has obsessive thoughts? What percentage of her time does she engage in compulsive behaviors? Is she afraid of school? Does she have panic attacks? Does she have temper tantrums? Does she try to hurt herself? On a scale of 0 to 10, 0 being totally functional and 10 being non-functional, where would you put her?

Is she ever happy?

The answer to this last one was so simple, and it required no explanatory clauses. “No.”

Clarity shaped itself around my answers. My child isn’t falling apart anymore: she has already gone to pieces. She can’t pull herself back together. Neither can I.

I waited anxiously for several days to hear back from Rogers. The doctors apparently looked at the screening interview notes and made some decisions. I got the call from the admissions lady today, informing me that they thought Jesse would be a good fit and they could get her in right away.

I promptly fell to pieces. Heaving, bellowing sobs unexpectedly took me from toes to shoulders. The nice lady was still talking. I spoke as clearly as I could through the convulsions. “Can you just wait a second? I just started crying and I can’t make out what you’re saying. I’m gonna try to take some deep breaths, give me a second.”

It was pretty clear this wasn’t the first time she had a parent fall apart at this moment in the conversation.

And so off we go on a new path in the journey. Three days this week, Anthony and I will accompany Jesse to 3-hour sessions with hospital staff to go over her situation and make a plan. Starting next week, she goes 4 days a week for 3 hours a day to a small group of kids and adolescents, for probably 8 to 12 weeks. A parent always has to be present. The commute is 45 minutes each way. The telephone lady remarked that she knew what a hassle it would be for us. I replied that it couldn’t be any worse than what we already endure at home every day.

I’ll try not to think about all the ways Nick is going to be overlooked in this process.  He’s 6 years old and well-adjusted, and I think he’ll be glad to see some improvement in Jesse’s behaviors. We’ll make it up to him somehow.

When my call with the Rogers person ended today, the sobs came barreling back. I laid my head on the desk and wept, and wept, and wept. I almost vomited. I hyperventilated. I smeared blue ink all over my face as I wiped away my tears with my calloused fists, because the only pen I could find to write with when I was taking notes on the phone was one of the kids’ goddam washable crayola markers in baby blue, and that stuff just gets everywhere.

I eventually took a deep breath and called my dear friend Erin. I was supposed to help her with a  tile job in her house tomorrow. Erin has known Jesse since she was three. “Hey Erin. I can’t help you tomorrow, I have something better I have to do.” There was silence from the other end of the line. “I have to take Jesse to a mental institution instead.”

Erin broke into peals of affectionate laughter. It was exactly what I needed to hear. And then she talked me down as I continued to shed tears.

I know this isn’t my “fault.” I know, rationally, that I’m not to blame. But my emotions aren’t there yet. Not only do I feel guilty for letting Jesse down and waiting too long to go this route, but I also worry about being too much of a martyr about it. I find myself trying to put Jesse’s suffering into perspective. Mental illness looks like nothing, really. I can easily say to myself that she’s better off than this person or that person — she doesn’t have cystic fibrosis, cancer, epilepsy, MS, physical disabilities, deformities, muscle weaknesses, intellectual disabilities, or any missing parts anywhere on her body.

But I know that’s a lie. Mental illness looks like suffering. It looks like self-loathing, self-injury, suicide. It looks like life cut short and lived hollow and imprisoned. Untreated, I know that’s what it’ll be for Jesse.

So we’re in. I’ll continue to let you know how it’s going when I can.

It’s okay to talk about mental illness

I wish it was as okay to talk about Jesse’s OCD as it is to talk about someone else’s autism or ADHD or Down Syndrome or physical disability. I wish teachers didn’t look at me like I’m CRAZY when I broach the idea of speaking with students about OCD and how it affects Jesse. The strangeness of true OCD is still too much for people. It speaks to stigma.

Jesse stood up suddenly in the middle of a silent math class last month and screamed out that she wanted to have sex with all the boys in there. Then she singled out two boys and invited them to have sex with her. She couldn’t stop herself. The teacher sent her to the principal’s office and she was promptly suspended for a day. They made Jesse sit alone in the principal’s office for two hours, her heart filled with humiliation and anxiety and the continuing obsessive thoughts. Then the principal called me and pleasantly informed me of what happened and of the suspension, about five minutes before I picked Jesse up at the end of the day.

I had just met with the principal, the school psychologist, the school counselor and Jesse’s teacher four days earlier, because Jesse had been blurting penis talk. We discussed OCD. We discussed the lack of volition behind these behaviors. Everyone nodded and said yes, yes, let’s try this and let’s try that. And then they did none of it and then they suspended her. During the pleasant call regarding the suspension, the principal informed me that they would never expel Jesse. No no no. They would use progressive discipline and eventually, if things didn’t improve, they would “suspend her in place.” That means Jesse would spend her school days in a room by herself, learning alone.

I remember laughing when the principal told me that, but not in a happy way. I remarked, “If you do that, why would I send Jesse to school?”

Because it is definitional stigma — the total shunning of an individual.

Well, let’s be more specific. Of a small child suffering from a severe bout of mental illness.

I don’t think for a moment that the principal was being thoughtless, intentionally unkind, or a strict disciplinarian. She’s actually a delightful, warm, caring person who seems to want to do right by Jesse. After the suspension, I sent quite a long letter to her and other people at the school, laying out some ideas for how to modify Jesse’s school day and give her some therapeutic tools to help her cope. The principal has been responsive and accommodating, open-heartedly embracing all of my suggestions. So I conclude that silence in our culture has left her ignorant — as I have been — about what OCD does to a person, and how utterly useless the usual disciplinary tool bag is.

Of course Jesse shouldn’t be saying sexually provocative things in fourth grade classrooms — or anywhere for that matter. Although here’s an aside. How exactly can we judge her when our world is overflowing with sexually promiscuous images and porn? And let’s stop blaming the internet. A simple trip to the grocery store can fill a kid’s head with hyper-sexualized images as she waits in line staring at magazine covers. And why should we judge Jesse more harshly than the fourth grader who comes to school flipping her hips in a short skirt, making goo-goo eyes at boys, wearing make-up, and being an excluding mean girl on the playground? They’re both thinking about sex — Jesse’s just being more direct about it.

Okay… way, way more direct.

But those are just a couple of the endless hypocrisies Jesse is grappling with as she takes in the world through her anxiety-addled eyes.

Last year a person I know vented to me about a girl in her kids’ school with Down Syndrome who had a habit of going around and touching other kids’ butts. This person felt that the girl didn’t belong in the classroom with other kids because of that one behavior. She was really upset that the girl’s parents had lobbied for accommodations and even sued the school to ensure that their daughter would be integrated into regular classrooms with assistance, instead of being shunted into a special ed room.

I was more upset by the speaker’s attitude than by the story. I didn’t understand her vitriol over this situation. I was with the parents. I approved of their advocacy and I think they were right. (I’m glad I felt that way, because now it’s my own Jesse engaging in disruptive, inappropriate behaviors.)

Lost my train of thought there… Right, so that’s what I was getting at: of course Jesse shouldn’t be asking boys to have sex or talking about penises at all odd hours at school. But disappearing her isn’t the answer. Understanding and helping her is.

And that’s why I want to talk about OCD, openly and without shame. I want to wear a giant poster board shirt and stand around on street corners. “MY CHILD IS AWESOME AND SHE HAS OCD.” Or maybe… “MY DAUGHTER HAS OCD. IT SUCKS. SHE DOESN’T.” I want Jesse to talk about it. I want her to own it and be grumpy about it and laugh at it. I never, ever want her to be ashamed of it, and I will disappear anything and anyone in her life who asks her to feel that way.

How could I possibly feel ashamed of Jesse for suffering from a mental illness? It’s not like it’s her fault. The only shame I feel is that, before I understood what was going on with her, I felt ashamed — because I thought she was just being a volitional jackass. I was wrong.

Instead of shame, these days I feel a profound compassion for my little girl, whose brain is full of horrifying, anxiety-driven images of misunderstood sexuality and violence, against her will and despite her best efforts. I wish you could see her at the end of most school days — the sunken and exhausted dark circles under her green eyes, her head hanging in shame, a feeling of failure leaking from her pores like an oozing pus. I wish you could hear her when she tells me that she doesn’t want other kids to laugh at her anymore. I wish you could see her deep, blank sadness over missing school activity after school activity because she can’t manage it.

And I wish you could see how much courage it takes for her to drag herself out of bed every weekday morning and prepare herself for five hours of Herculean struggles to achieve self-control. She rarely balks. She is an extraordinary child who is persevering through some truly horrible shit.

So I wish you wouldn’t shun her, dear world. I wish you would give her a break, and maybe even a hand.

I wish it was as okay for her to have OCD as it is for kids to have learning disabilities these days.

vignettes from a grumpy day

Bob the Plumber and his side-kick Dylan arrive early today to do as much work as they can for our renovation. They can’t install the sink or dishwasher, because the counters aren’t in yet (why? why??). But there’s plenty else to do, and Bob swears that the horrendous nerve pain in his cracked molar isn’t going to stop him.

Nick, who hasn’t left for school yet, greets Bob cheerfully. As Bob gives our dog Madeline a scratch on the ear, Nick announces loudly and helpfully, “SHE’S A GIRL.” Thanks to Nick’s cute underdeveloped palate, it actually sounds like “she’s a go-wool.”

Bob takes note of this news politely. “Oh, is she?”

“Yeah,” answers Nick. He starts up a game on his iPad and his thumbs get busy as he stares unblinking at the screen. “Mommy doesn’t like to have boy dogs because you can always see their penises.”

I try not to be too embarrassed by this disclosure. Bob handles it diplomatically.

(It’s not the visual, by the way. It’s the dry humping I can’t tolerate.)

* * * * * *

I was planning to install the last sheets of a waterproof membrane in the future parents’ bathroom while the kids are at school, but Bob has to turn the water off for a while. What a shame that I can’t do this particularly grueling task today. The blisters and scrapes on my hands will have to wait a day.

All I can do is sit and plan the tile layout in said bathroom. This is brutal and brain-twisting work, I tell you. Bob pops down an hour into my mental contortions, looking somewhat happy. He talks with his jaw clenched, like he’s Clint Eastwood in High Plains Drifter. “Ah j’st hud the t’uth pulled.”

Unbeknownst to me, for the past half hour Bob’s been at the dentist having his tooth pulled out. He’s back to work now, numb jaw and all. Meanwhile, I’ve accomplished nothing. I feel terribly inadequate.

* * * * * *

I drive over to Glen Hills middle school to pick Jesse up. She’s currently on a shortened schedule to help manage her anxiety and OCD. She can’t make it through a full day yet without unraveling. No no no, that’s not the right metaphor. Not yarn. That’s too soft. She’s more of a shrapnel bomb. She can’t make it through full school days without shrapneling.

Most days when I get Jesse, we head straight home and she finishes her schoolwork here. We cover whatever material she’s missing in the afternoon, she does her reading and math and homework. Sometimes it’s easy, sometimes it’s bitter. But before we get started, Jesse usually comes in for a long embrace. Sometimes it’s before we even make it out of the school house. She sits on my lap or stands next to me as I kneel or sit. She wraps her scrawny and strong arms around my neck and leans in. We hold each other tight for long minutes. She’s still so little that when my arms wrap her body, my hands reach around as far as my opposite shoulders. I could just as well be hugging myself. I don’t know what Jesse’s thinking, and I don’t ask. I know she’s still and silent; this is a rare and precious state for her, so I don’t like to interrupt it. I don’t know what I’m thinking either, as I bury my face in her hair and kiss her. Sometimes I’m filled with simple love (whatever that four-letter word means to me today), and sometimes with a longing for an easier path through life for her, and sometimes with a simple sadness that her school hours are so hard for her.

Anyway, I pick her up today as usual. I beat Jesse to the exit area, so I slump in a chair and wait. My eyes happen to land on a large sign welcoming visitors to the middle school. But my sight is blurry and tired, and my contact lenses are dirty, and what I read is “WELCOME TO GENITALS!”

Ew. Jesse’s penis obsession is definitely rubbing off on me. The good news is, I read the sign wrong.

* * * * * *

I take Jesse to Starbucks for a vanilla bean cream frappucino, her favorite treat obsession these days. I’ve tasted it and I’m totally repelled. It’s sugar, with sugar added, and then topped with sugar and whipped cream.

But it’s what she loves, and she came out of school with a smile and a pretty good attitude, so I think she deserves it on a Monday. She settles down into a bar chair and slurps away. I stand next to her leaning on the bar, waiting patiently for her to enjoy her treat. I realize suddenly that her face is weirdly close to mine and she’s inspecting the bottom half of my face.

“Why are you looking at me like that? Are you looking at the scratch?” (Jesse gave me a wicked scratch on my jaw a couple days ago while she was jumping on me from behind.)

“No. I’m looking at your face. You look like a nice grandma.”

Nice. “Why? Because I’m old?”

“No!” Jesse exclaims cheerfully. She pulls her chin back to make a double chin and talks with narrow pursed lips in a low tone, as if she’s imitating… me. “It’s because you’re all blubby.”

I hug Jesse from behind and squeeze, and also I burp directly in her ear. “Do I burp like a grandma?”

“Yes, like a strong grandma!”

At least I have that.

* * * * * *

Jesse and I head over to pick up Nick from elementary school. He comes out smothered in his own cheerful smile. You would never, ever guess that at last week’s school conference, his teacher told me he cries a lot in class. He seems to have a lot of anxiety and has very little self-confidence, especially about learning letters and sounds. He gets hung up and really worried about tests. He gets down on himself about doing badly. He’s being placed in a reading intervention group.

Nick is in kindergarten so I’m not too worried about the reading thing yet. I’m more worried about his mood, given our family histories. I need to get on that and pay some serious attention to him, help him get over his fear of learning to read, do some extra tutoring with him. But with what spare time?? I’m spending every free moment trying to finish up my part on this fucking renovation. In 4 to 6 weeks, I keep telling myself, in 4 to 6 weeks.

Until then, I keep mulling over a sweet moment Nick and I shared a couple days ago, as we sat on the stairs to the basement. He straddled my lap and held my cheeks gently with his not-tiny-for-much-longer hands. I said I was sorry for being so busy and not being able to do as much stuff with him as I should. He replied, “You’re right mommy. You do a lot, but you don’t do enough for me lately.”

But those worries are blown straight out of my mind when Nick walks out of school. He is pure sunshine. He loudly and methodically hands me all his crap the second he steps out the school doors. “THIS is my school work. You have to bring it back tomorrow. THIS is something else I have to bring back. THIS is my lunch box.” He smiles at me disarmingly and decides to keep his backpack on. I don’t even get a hug as he races off to the playground.

A good-sized handful of kids and their parents, a combination of moms and dads, tend to stay after school to play on good-weather days. The kids get along well, and it’s an easy chance to socialize and get some fresh air after being cooped up in classrooms all day. Nick has so much fun. He makes friends easily; he’s kind and inclusive. He’s just a cool little guy. Jesse struggles this year with playground time. She’s either going hog-wild OCD on penis talk or sitting somewhere by herself being morose. Today, she sees a classmate from middle school who’s come with an older family member to shoot hoops. They greet each other shyly, and then Jesse promptly starts to lift her shirt in one of her OCD maneuvers. At least she doesn’t ask to have sex with him. But other than this blip, she seems to have fun. She plays with several kids and runs around. She’s pretty normal today. It’s kind of weird, I think to myself.

* * * * * *

After dinner, Nick fires up a Power Rangers episode on his iPad mini. I hate all 400 Power Ranger series equally. They are the stupidest shows ever made. They suck so bad, and the plots are even worse than the acting.

But I don’t do anything about it. I should be playing alphabet games with Nick. I should be playing board games with Jesse. We should be doing jumping jacks and interactive play, followed by sun salutations and meditation moments, and then gratitude sharing. Instead my kids are watching Power-Bad TV on the iPad and sharing rainbow sherbet straight out of the tub.

At least they’re using spoons. And they’re getting along in close quarters. Nick isn’t screaming at Jesse, and Jesse isn’t kicking, clawing, or choking Nick. No one is putting anyone down. In fact, they’re being downright delightful together.  I’ve been waiting for days like these for a long time.

Jesse strolls over to me. She sits in my lap and I hold her like a toddler I’m nursing to sleep, her legs slung to one side of me and her neck in the crook of my arm. I love these sweet moments with my children. She leans in and looks lovingly into my eyes as she squeezes my meaty upper arm. “I need your warm blub to warm me up.”

* * * * * *

After warming up on my blub, Jesse segues smoothly into the title of her new “personal narrative,” which is a thing they do at school. Her latest is called “The One and Only Free Heart,” she tells me.

“That sounds really neat. What’s it about?”

Jesse giggles. “I don’t know yet. I only wrote the title.” I can practically see her brain whirring as she spins out a tale between her ears. I realize suddenly that I haven’t heard Jesse mention penises but twice this entire afternoon. Penises are nowhere to be seen as she dreams about the story she’ll tell.

I think that’s worth being grateful for, even if I am a sorry, disgruntled excuse for a mom these days.

grumpy about mental illness (PBS Nature Fail)

Jesse has OCD. Jesse has OCD. Jesse has OCD. Jesse has OCD.

I’ve been obsessed with this idea lately.

It could be that I’m experiencing unwanted, intrusive thoughts. More likely, it’s because she actually has OCD and I’m her mother and I’m just starting to comprehend how malicious and destructive this chronic disorder can be. We have a lot of work to do in the years ahead.

So here’s what I’m coming to understand about OCD. It is not OCPD (which I now pronounce oh-see-PEEE-dee). Obsessive compulsive personality disorder is what many of us actually think of when we think “OCD.” This is the one where the person is really rigid. OCPD typically involves an unwillingness to give up responsibility to others (because you’re the only one who can do things the right way) and a sense of righteousness about how you’re right about everything. OCPD peeps are fixated with rules and moral codes; they’re perfectionists and cheap hoarders.

Or at least that’s what I’ve read. So basically, it’s one of those “asshole” disorders. With my apologies to anyone I know who has been diagnosed with OCPD. I’m not judging, by the way. I’ve also recently been diagnosed with OCPD. A couple days ago, Anthony diagnosed me. He is a doctor, though I’m not sure that a Ph.D. in the dismal science translates to skills in interpreting mental maladies.

Anyway, OCPD isn’t Jesse. OCD is. Obsessive Compulsive Disorder is an anxiety disorder, not a personality disorder. I’m not sure I grasp the difference fully, but whatever. What matters to me is that Jesse suffers from intrusive, unwanted thoughts that she can’t control, and they don’t have a lot to do with reality. She’s the opposite of a control freak. They seem to have everything to do with fear. She gets temporary relief from these horrifying intrusive thoughts by doing compulsive things. I’ve complained before that I don’t think Jesse is “normal” OCD, but it seems like she might actually be. The main obsessive thoughts that seem to haunt her right now — killing her loved ones, sexuality (more specifically, perverse thoughts about penises) — are apparently common obsessions for OCD peeps. And, like many folks suffering from OCD, she’s fully aware that they are thoughts that shouldn’t be there, which is pretty devastating when you think about it for too long.

Take everything I say with an enormous grain of salt, by the way. I’m not yet well-educated about OCD. I’m working on it.

Meanwhile, we’re coping best we can with Jesse’s penis-and-murder obsessions. I don’t feel like waxing on right now about the changes we’re making, but I can say that they’re helping. Some schedule modifications at school, some new parenting strategies, yadda yadda. Jesse’s heading in the right direction. She’s coming back to us.

As part of these changes, we settled down the last few evenings to watch PBS Nature episodes before bed. That’s usually peaceful stuff. Sometimes animals face hardship, sometimes they die, but you know, it’s nature. We watched an episode about elephants. It seemed to be mostly about these two humans trying to get close to elephants to take pics, and also about how elephants frequently visit the remains of dead elephants and do a sort of remembrance ritual. And then suddenly in the middle of the episode OH MY GOD THEY’RE HAVING SEX AND THERE’S A GIGANTIC ELEPHANT PENIS.

I winced and begged the universe for mercy. Fortunately, Jesse was drowsing and tuned out, so she didn’t notice. I said nothing.

Then over the next couple days we watched a two-part episode about orphan animals, and that was more like it. Innocent little babies trying to survive, wonderful human animal rescuers saving their lives. Yay!

Tonight we put on another innocent episode, “Big Birds Can’t Fly.” What could go wrong? Fifteen minutes in, the topic of courtship came up; and then the narrator, with his suave English accent, started talking about penises. Most birds don’t have penises. Evolution didn’t allow them to have them because they’re too heavy. But ostriches and other flightless birds can have them. Penis penis penis. On and on it went, including discourse on how ostriches enlarge their penises. It was like a bad joke. Jesse cried out in terror. “Mommy! They’re talking about penises.

I was snuggling with Nick. “I’m sorry, honey. Penises happen. It’s okay for them to talk about it here.”

“But MOM. They’re talking about PENISES.”

It was really too late to do anything about it.  I suggested she just hang in there because they would move on to another topic soon but then OH MY GOD THEY’RE HAVING SEX AND THERE’S A GIGANTIC OSTRICH PENIS.

It was truly shocking and cringe-worthy. Jesse was completely overwhelmed. Even Nick was mortified.

Jesse cowered under the sheets. I knew her obsession was in full swing between her ears. There was a penis party going on in there.

I’ve made a scale for Jesse, like the one-to-ten pain scales. I call it the penis scale. Every day when I pick Jesse up from school (two hours early), I ask her. On a scale of one to ten, one being you never thought about penises and ten being “penises, all penises, and nothing but penises”…. how was your day? She thinks a moment and gives me an answer, and then we move on. Enough said.

(How is a person to survive without laughing at the things that hurt the most?)

Jesse’s had a great week so far. But tonight was a ten-penis night. Thanks for nothing, PBS Nature.

transition labors

My cousin Sherry pointed out recently that, at this point in our renovation project, reminding me (as she did) that it’ll all be worth it in the end is like reminding a woman in transition labor that it’ll all be worth it.

I understand the implication — it ain’t gonna help — but Sherry was wrong. It helped.

* * * * *

I remember Nick’s transition labor really clearly, because I elected not to use any painkillers. I had an epidural with Jesse because I didn’t know any better. It created a disconnect between me and my body that I didn’t like. I couldn’t really feel the contractions, so I didn’t have an intuitive sense of when or how hard to push. It was very mechanical and medical. Not at all the right thing for a control freak like me.

Anthony and I decided together to skip the epidural with Nick. We had to induce, so it was freight train labor for a few hours. I sat on the doctor’s stool for most of my contractions, with Anthony standing next to me. I wrapped my arms around his waist, rested my head on his ribs and breathed quietly, Bradley-style. Sometimes I wandered here and there. Since I was attached to an IV bag of Pitocin, Anthony would fuss with strings and things on the wheelie contraption that held the Pitocin bag, and he’d help me wander. On and on it went, with an increase in the Pitocin dose every half hour.

It was all pretty bearable, until something really, really bad started happening. “I think I need to poop,” I told Anthony.

Anthony shook his head patiently. “No. You don’t.”

“I really, really think I need to poop. I need to poop now. I need to poop RIGHT NOW.”

Anthony looked at me, still mild. After a long pause, he said, “Ok.” He fussed with the wheelie thing, and we went to the bathroom. I sat on the toilet. I got right back up. My crotch felt so wrong.

“I don’t need to poop.”

“I know.”

Days later, Anthony told me he realized then that I was in transition labor. I asked him how he knew.

“Because you were panicking. The book said you would panic.”

Literacy: don’t get pregnant without it.

After the aborted poop trip, I spent the next 20 or 30 minutes cursing intermittently. Have I mentioned this before here? Not loudly, and not at Anthony. I was standing. Each time a contraction hit, I bent over at the waist and held onto Anthony’s hand and a table while the nurse rubbed my back, and I muttered a chant quietly as I took slow, calming breaths. “ohfuck ohfuck ohfuck ohfuck ohfuck ohfuck ohfuck.” Deep breath in. “Ohfuck ohfuck ohfuck ohfuck ohfuck ohfuck ohfuck.” During the intervals between contractions, I apologized profusely for my language.

I remember telling Anthony at some point, “I don’t think I can do this for an hour.” He answered with a shake of his head. “You won’t have to.”

The nurse chimed in. “It’s too late to give you anything to help, honey.”

By the time the doctor got to our delivery room and extra nurses started fussing about with I-don’t-know-what, I was done cursing and was on to a new repeating line. “I gotta push. I gotta push. I gotta push now.”

Doc looked at me and shrugged, a mix of sarcasm and humor. “So get on the table and push.”

I climbed up on the table myself. Anthony lent me a hand. I found the lever to adjust the back of the delivery table. “How upright can i make this go before you want me to stop?”

The doctor looked at me with a stink eye and spoke in a dry voice. “Well at some point, I’m going to have trouble catching the baby.”

It took 3 contractions. The first one, I was still too shaky and winded from climbing onto the table, getting my legs up into those humiliating stirrups, and adjusting the table back. I was also distracted because I wanted to yell “RING OF FIRE! RING OF FIRE!” but I was trying hard not to say it out loud, because when I was pushing Jesse out I told some jokes and laughed — an excellent sign of nerves — and then Anthony barked at me to stop laughing and concentrate on what I was doing. So I didn’t yell out “RING OF FIRE!” in Nick’s delivery room, even though I thought it would be really funny. (Except for the ring of fire I was actually experiencing. That wasn’t funny.) I didn’t want to irritate Anthony again, and I thought he was right that I should concentrate better. So I kept quiet. Which took much of the mental effort I should have put into pushing issues.

Right, so that was the first contraction. The second, I popped Nick’s head and gave myself a stage 500 perineal tear. All those squats really paid off. The third contraction, Nick’s shoulders hit fresh air and I was pretty much done with my work. Except for the placenta, and ew, TMI. I walked out of that delivery room, pushing Nick’s crib thing — what do you call them? I can’t remember what they’re called. AH! Bassinet. I pushed the bassinet to the recovery room myself. It felt good to walk out on my own, with my man beside me. They should have just let me carry the baby.

* * * * *

Jesse is going through a sort of transition labor. The Citalopram seems to be working. Her mood has improved remarkably, and she seems to be more clear-headed and resilient. But clear-headedness means she can better understand how messed up she’s been and still is. She’s exhausted after months of trying to control herself. She doesn’t know what’s happening in her mind. She’s out of energy. She’s panicking, just as we can all sense that she’s about to make some big breakthroughs.

Saying Jesse has “poor self-esteem” sounds trite, but sometimes it’s easier for me to think of it that way. It’s a euphemism in my mind for “self-loathing” and “destructive self-hate,” both of which are more apt to make me cry. Just yesterday, the school guidance counselor called me to touch base. Someone had asked Jesse what she thought might be a good thing to do if she’s having trouble controlling her urges to say inappropriate things. The idea was to have Jesse come up with some of her own strategies.

Jesse answered. “Just kill me.”

Jesse’s therapist and psychiatrist independently insist that she doesn’t meet the criteria for a Tourette’s diagnosis. It isn’t tics that get her, but rather obsessive, perseverative thinking. OCD. And of course, anxiety. Anxiety disorders are a messy, messy business. The symptoms and behaviors overlap with, and are related to, stuff that happens with OCD and ADHD. So when a child has severe anxiety, it’s very hard to determine if there are also other issues in play.

It’s a mess when you’re full of random, inchoate fear. It takes a long time to sort it all out.

I decided to explore the OCD thing with Jesse, because she seems to feel uncontrollable urges to do some pretty stupid stuff — grab kids inappropriately, say inappropriate words (these days mostly “penis penis penis”), that sort of thing. She describes it as a burning feeling that rises up in her throat as she tries to stop herself, until she can’t fight it anymore. My ignorant, uninformed mind says “Tourette’s” to that, but the experts are saying OCD. I’m listening.

A pretty typical OCD scenario involves a person who feels she has to do something in order to avoid a really bad consequence. Like… “Unless I touch the floor at 20 minutes past the hour, my mommy will be hit by a car and die.” So I asked Jesse one day, “What do you think will happen if you don’t do those things your body tells you to do?”

Jesse was pensive and glum. She sat quietly and then muttered, almost inaudibly, “I won’t be myself anymore.”

It took me a second to register it, and then here’s what I wanted to say. “Well THAT’S fucked up, Jesse. Why you gotta be so deep and intense and all? Why can’t you just be normal OCD?”

I don’t remember what I actually said, because I was aching all over. There are so many hairline fractures in my heart; what’s another one. But I’ve thought about it a lot since then. A LOT. Like, obsessively. I can’t stop spinning it in my mind. I keep wondering what it feels like, to think you have to do certain things that you know will alienate you, direct disapproval your way, ignite disappointment, leave you friendless and lonely, make you miss out on fun activities — or else you won’t be you anymore. That is so messed up. I eventually asked some more questions, and it became clear that Jesse thinks her rage and anger and strange behavior are inexorably linked to her creativity, her imagination, her individuality and uniqueness.

That is some crazy, heavy shit.

Dr. Abrams suggested we treat it just like you treat any OCD behavior. Directly. It’s very strange, but we’re trying. This weekend, Jesse woke up not angry. That’s still unusual, but an increasingly common phenomenon. I reminded her not to be angry. Don’t hurt people. Be kind and gentle. She did it for a while, and she also got on the computer and wrote this poem, inspired by the t-shirt she was wearing:

When in Doubt

When in doubt dance it out!
When in doubt to the nearest water to the stream just dance it out.
When in doubt fly as far as ever to the place which is just right next to your journey.
When in doubt you are who you are to the nearest peaceful island.

Then she found a piece of paper and drew a picture of a “flower girl” — a girl with an unfurled flower for a body. Next with a few added strokes she turned it into a girl who got trapped in a genie bottle. It was a lovely, loose pencil sketch.

I remembered to say it: Jesse, you controlled yourself this morning. You haven’t attacked anyone or anything. You’re still drawing and writing. You’re still creating and imagining. You’re still you.

She didn’t say anything, but I know she heard me. I could see her staring into blank space, thinking.

Jesse asked to go out to breakfast with just me on Sunday morning. She said, “I decided that’s my mental illness right now: I need my mommy.”

You could press me to death under large rocks and it still wouldn’t match the weight of those words in my life. But instead of bearing down on me, they lifted me up and gave me hope. Because Jesse knows she needs me; and I guess that means she knows she can need me.

We had a delightful breakfast together. We went to a restaurant we used to visit every Sunday morning when Jesse was a toddler, before Nick was born. We chatted about how Jesse used to slay the patrons and staff with her cuteness and giggles. We went back in time to a place where another equally real Jesse used to live — still challenging, still intense, but somehow more joyful and present in the world that exists outside the space between her ears. I nattered at Jesse about it. You are everything you’ve ever done and experienced. You are more that what you do today. You are still redefining yourself, and I hope you never stop. You are always YOU, no matter what you do. Jesse nestled in my arms and made me feed her pieces of pancake, like when she was a toddler. It was strange and peaceful.

We’re in transition labor together again, Jesse and me, only this time I don’t have an epidural to blind me to what’s happening. The pain is intense, excruciating, almost unbearable. But we have no choice. We have to continue the journey. We have Anthony and Nick beside us, patient and gentle. And I can still carry my baby when she needs me.

That’s what all the squats are for.

* * * * *

Our home renovation is in its last throes as well. I’m panicking about that too, even as the end looms, and I have many transition labors to accomplish so that we can have our house back.

Drywall was installed last week. Two guys put in every piece of drywall in a mudroom, kitchen, eating area, two bedrooms and a bathroom, in less than 9 hours. I was blown away.

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Then Greg, the drywall expert, spent 5 days taping and bedding all the joints and making everything smooth and pretty, and then priming all the new drywall. He got to wear stilts, and he did a beautiful job.

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He left our new spaces blinding white and ready to paint.

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While Greg worked over the drywall, a gentle soul named Marcel painted the outside of our house.

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While Marcel and Greg did their thing, I pieced up some old floor boards onto plywood and roughed out a plank table that’ll sit under the window in our kitchen.

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After cabinets are in, we’ll put the final cuts on that slab, adhere some quality hardwood laminate along the edge, and pour a self-leveling epoxy over it as a finish. It should survive whatever abuse the children heap on it.

We painted the kitchen area.

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We finished repairing the ten million holes made to blow in insulation in existing walls.

I’m almost done making a new cover for the laundry chute opening.

We’re installing kitchen cabinets ourselves.  Prep work (with spawn stretching):

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A few cabinets in place:

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We just need to finish getting those cabinets in, and then the counter guy and the flooring guy can get busy. And then I need to tile the master bathroom and mudroom. Also we need to install some interior closet doors, and we’re doing all the wood trim ourselves. There’s more painting left to do in the bedrooms. And lots of other little things.

It won’t be long now, but I have a lot of labors to get through. I’m panicking for sure. But I keep reminding myself: it’s transition labor. It’s just a thing that happens as the end comes near. There’s nothing anyone can give me to help ease the pain now, but if I can wait it out, it’ll all turn out right.

Or at least, right enough.

depressed again, naturally.

Once in a while the threads that keep me airborne break and I crash into the muck of depression. It’s happening again, and I always spend way too much time in these episodes pondering whether it’s really situational or just me, because I know I could be handling it better.

* * * * *

Jesse has taken her version of Carlin’s seven-dirty-words routine to school. “FUCKSHITPENISASS!” Her classmates are startled and a little scared, her teacher reports. Jesse ends up in the counselor’s office alone to do her work most days.

The words sit inside Jesse like an ever-present, vomitous bile. She told her teacher, “I feel like I need to say the words, and if I don’t, it turns into a burning feeling in my throat that gets worse and worse, until I have to say them.”

We still don’t have an official diagnosis of anything except anxiety; but if that doesn’t sound like a plain case of Tourette’s syndrome, I don’t know what does. Maybe it’s time to push the shrink for a formal diagnosis, so we can get a game plan on with the school. People worry about the stigma of a diagnosis, but what could be more stigmatizing that being the classroom’s resident freak show, even if the syndrome remains unnamed?

The outbursts are confusing and humiliating for Jesse. I started telling the teacher about Jesse’s alienation and friendless state. I couldn’t get all the words out, because the tears would have come out too. I didn’t feel like crying. I’ve already been crying too much lately.

Jesse has barricaded herself behind a fortress of anger and hostility. She doesn’t cry for emotions anymore, just physical pain and rage. She’s mean to all of us, even the dog. We keep hunting for chinks; Citalopram is definitely opening some cracks, but it’s slow going. A couple days ago, Jesse told me, “I’m not easy to break on the outside, mommy. But inside, I’m real easy to break.” I stuck my finger in the chink as hard and fast as I could. I asked her to break easy on the outside, to let us see her hurting so we can help her.

Jesse thinks her creativity is linked to her rage. Anthony and I chided her. Creative people are vulnerable and open, not cruel and closed up. True human insight comes from that softness, buttressed by the courage to speak — not from anger and cruelty.

* * * * *

Jesse likes to threaten to kill us all these days. “I hate you. I’m gonna kill you! I hate you! I hate you! I wish you were dead!”

A few nights ago I couldn’t take it anymore, the incessant rant of threats, death wishes, weird cussing and sexual references. It was too much. I stood next to Jesse, who was holding a block of wood she took off the top of the newel post for our basement stairs. “Just do it, Jesse. End my misery. Kill me. You can use that block to do it. Just brain me. Hit me in the head, over and over again. I’m begging you.”

She stared at me in shock. “What??”

“You heard me,” I answered. “Do it. Stop making noise. If you want to kill me, do it. Me and daddy. Just get it over with. Stop being a bully and making threats. Just get on with it.”

Anthony stood next to me. Kill us. Then we’ll be dead like you want. You’ll have exactly what you want.

In that moment, I meant it. I felt peaceful about it. I was ready to take the blows. I was ready to make the final sacrifice. Maybe it would teach her a final lesson.

Jesse ran upstairs and sobbed on the sofa. I didn’t understand her reaction.

* * * * *

My heart breaks and breaks and breaks for Jesse, even as my own rage breaks the dam I build every morning as I plan out how I’ll survive another day of her verbal and physical abuse. I keep waiting for relief, and I weep every day as I wait. I try to do it in private places where no one will see me. No one likes a cry baby. But once in a while I can’t stop it. Nick thinks it’s all his fault, amplifying my guilt; his soft brown eyes brim with tears as he hugs me and asks me to stop. Jesse tells me coldly to stop being a cry baby, but she can’t hide the startled sadness that lurks behind her huge green eyes.

Last week Nick’s teacher, Mrs. R, told me an anecdote. The kids were supposed to be drawing something they think about a lot. Nick was having trouble getting started. Mrs. R asked him what he was thinking about. “I’m thinking about how my mommy cries a lot when she’s sad, and sometimes I cry too because she is crying.” Mrs. R answered Nick cheerfully, “Oh! How about trains! You like trains! Or dragons! Draw dragons!”

Mrs. R, whose own teenage son struggles with a mood disorder and behavioral challenges, wasn’t chastising me but just letting me know, keeping me in the loop. Still, it was a crushing moment.

* * * * *

There was no school yesterday. Our district doesn’t have school on Yom Kippur. They call it a “fall break day,” but everyone with half a brain knows it’s for the Jewish new year. I took the kids apple-picking. It was a disaster, of course, devolving into whining from Nick and abuse from Jesse. As we tried to drive away after filling two bags with apples, I had to pull over and kick Jesse out of the car. I called Anthony and ended up sobbing uncontrollably as Jesse sat on the grass next to the road. Unexpected words flowed out of my baby-bawling mouth, giving shape to how low I’ve come.

I can’t remember the last time I had real fun with my kids. I can’t remember the last time I was happy. I have no hope that anything will change. I haven’t had a break from on-site parenthood in TEN YEARS. I live in this filthy shithole of a house, working seven days a week on this and that, waiting and waiting for our renovation project to push forward more quickly, but it’s only going to go slower and slower because I have to do more work myself to make up for budget overruns.

Snot ran out of my nose and tears poured onto the steering wheel as I blathered at Anthony. He was silent on the other end until I dried up. “I’m sorry, Carla,” he answered simply and quietly. “I know it’s been hard for you. Jesse is impossible.” I could hear his heart breaking for me, and it made me feel selfish and self-absorbed.

I think we have to give the dog away so she can be in a place where she’s not afraid of the kids. I love her and will miss her so much. I hate it.

A person came to my house Tuesday, trapped me in a room where I was trying to avoid him, forced a conversation on me that I had told him several times I didn’t want to have, harangued me and yelled at me and insulted me. It was aggressive, bullying behavior. I reacted like a trapped mongoose, because what else could I do? It was truly the most awful human encounter I’ve had since I quit lawyering. I was only thankful that Anthony wasn’t here to witness it. He doesn’t like to see me feeling threatened and I’m not sure what he would have done.

Jesse was right when she said we were being greedy by doing this home improvement project. My misery is a simple karmic justice for my greed.

* * * * *

There have been moments of light, but right now they feel to me more like the trick your eyes play on you when you’re in pitch blackness. The light isn’t real. I can’t even fake up hope today.

But I like Yom Kippur. I like what it’s about; I like the idea that you can seek new beginnings, again and again. Christians like to think they own the market on principles of repentance and forgiveness, but they forget that those very ideals grew out of Jewish traditions. And it seems to me a lot of modern Christians leave out an important aspect of these ideas: you should seek forgiveness not only from God, but from the people you’ve wronged. You should atone not just in prayer and between you and God, but in life here on this earth.

I read a little Yom Kippur poem yesterday.

To those I may have wronged, I ask forgiveness.
To those I may have helped, I wish I had done more.
To those I neglected to help, I ask for understanding.
To those who helped me, I sincerely thank you.

Nice ideas. I read them and started crying as I thought about Jesse and Nick who have only me to be their mother, who deserve better than I’m giving them these days. I re-imagined the poem in my own image, as I prayed to my children.

For all the wrongs I’ve committed against you, I beg hopelessly for your forgiveness. Someday. When you’re older.
For the times I actually managed to help you, I wish I had done more. And better.
For the countless times I neglected to help, I ask for understanding. Someday. When you’re older.
For the times you helped me, lifted me up, and threw me a lifeline. I sincerely thank you. You shouldn’t have to do that for me. You’re children.

* * * * *

Will my children ever forgive me?

Grumpy about the tics

Jesse has had a new word tic for the past 5 or 6 months. We call it Penis. 

Not to be confused with *** Is Fat or I Hate *** (insert any name of someone she loves), Feet on the Table, Kick You, Punch Punch, Lick It, or Touch It Touch It, which are well-established tics that wax and wane. 

It is the nature of Jesse’s tics to seek forbidden terrain. Penis is a new adventure in Jesse’s mental and spiritual journey, and Penis is with us in the car as we make a physical three-day journey from Wisconsin to the Atlantic Ocean. 

Jesse says it at all manner of odd times, a curious expression of her stress. She wakes up and rolls over. “Good morning penis penis penis.” She goes to sleep saying it too, and in the dark she mixes it with loud, reverberating yawps that sound like jungle monkeys heading into territorial battle — or like a miserable child struggling to get a grip on something in her brain that none of us yet understand. 

When times are tough (in her mind), Jesse wanders a room twitching like she’s getting electric shocks. “PP! PPPPHPPHH! PPE PE PE PEE!! PE PENIS!!” She takes a deep breath and tries to calm herself, fails and then croons quietly in her sweet, high-pitched little girl voice. “Penis penis. Penis.”

She mutters it sometimes at taekwondo during stretching. Even as it humiliates her, she seems powerless to control the blurts. Everyone ignores her masterfully there, but at home where we endure it on and on, trying and trying to ignore it and not reward it with attention, it drives us mad and shreds away any remaining armor of patience. All that’s left is a collective raw nerve. 

I’ve suggested different words, like “peanuts.” But apparently not even that packs the right punch for her.

We’ve also tried reverse psychology. One morning we woke up to Penis. I said to Nick, let’s just only say penis to Jesse today. He looked at me in concern and then said hesitantly, “mommy… Nooo…”

We were silent a moment and then Nick spoke. “Jesse?”

“What, Nick?”

“Penis.”

For a while Penis manifested in phrases. One day as I took a shower, Jesse popped her head into the bathroom and spoke cheerfully. “Hello hairy penis lady!”

On her third visitation, I snarled, “say it to me one more time and I will take your iPad away for the entire summer!”

She didn’t come back. Shit shit shit, I thought, as I pondered the weight of idle threats. I found her in the bedroom. She looked at me and spoke mildly. “Hairy penis lady.”

I had to send Anthony to her to undo my idle threat and impose a more rational consequence.

Penis shows itself in physical behaviors too, which are very disturbing. Jesse puts her hands to her crotch and mimes as though she’s spraying pee everywhere with what appears to be an absolutely enormous penis. Or she tries to punch or kick Anthony’s privates. 

We’re driving to a beach house that we’ll share for a week with a handful of families. Jesse has expressed a lot of concern that Penis tic will rear its ugly head. She knows peeps will think she’s strange. Maybe they’ll get pissed off. Odds are good that if she gets going, kids won’t want to play with her. Worrying about this ramps up her stress, increasing the probability of Penis taking over her mind. 

This morning, the topic of imaginary friends came up. It occurred to me that Penis is much like an imaginary friend, a mysterious presence in Jesse’s mind that follows her everywhere and manifests in our real world. I suggested Jesse say good bye to her imaginary friend, much like Anthony once did long ago (more on that another day). Maybe Penis doesn’t have to come to the beach house with us. 

Jesse didn’t answer but I knew she heard me. I could tell she was thinking. 

We drove three hours and found a DQ for lunch, in the prosperous hills of West Virginia.  We walked in and Penis started right up as we waited for our food. I asked Jesse to go say good bye to Penis, just go open that door and send Penis out. Penis can wait outside, and you can spend time with her later if you have to, when you’re not with us. 

Jesse glared at me and slowly walked to the door. She opened it and, after a long look at me, stepped outside. I waited a few seconds and realized Jesse was staying outside. 

I stuck my head out the door. “Jesse, you’re not Penis. Penis is imaginary. Leave her outside, and you come back in.” 

“Oh!” Said the relieved look on Jesse’s face. She sat down at the table with me and we had a peaceful few minutes. 

Penis did not re-enter the premises, and then I re-learned a lesson I always forget, perhaps as a survival mechanism. Jesse’s tics are tag-teamers. Before we left, Jesse had put her feet on the table repeatedly, started whining, and also she kicked me incessantly until I was livid. I didn’t have any space in me to praise her for letting go of Penis, and I was filled with the rage of impotence and failure, having watched my supposedly brilliant ploy defeated soundly by Jesse’s issues. 

I snapped at her one last time, my shins and knees aching from her kicks, “stop kicking me!!”

“Why?” She sounded insolent to me.

“This is why,” I answered grimly as I shoved a foot up on her thigh under the table and dug my shoe in. 

“Ooow,” she grunted quietly. She kicked me again under the table and I kicked her hard a second time. I was so pissed off I wasn’t even thinking about child protective services. 

She stopped kicking me.

Still full of impotent rage, I yelled and shrieked at her in a full fit of Snarla when we got back in the car. When she threatened to hit Nick, I snarled, “do it! DO IT SO I CAN PUNCH YOU BACK! Let me show you what it feels like to live with you!!”

I said to my ten-year-old daughter. 

I went on, though the words are a blur in my memory. I’ve never in my entire life let anyone treat me like you do! You hurt our bodies every day, and you put Nick down constantly! I don’t care why anymore! It has to stop! I don’t care why you abuse the people who love you most! Whatever you do to us, I’m going to do to you WORSE!!

My child, my love, my little offspring, for whom I would rip off my own arm if I had to, cringed away from me in fear. And I didn’t feel even a little bit bad about it. 

At least, not until I calmed down about ten minutes later. But her behavior has definitely improved in the 5 hours since. Not perfect, but better. Not as many P-bombs. 

And so I’ve learned a bad lesson. There has to be a better path to helping Jesse overcome her challenges — something better than just being more fucking crazy than her.