RealMental

Princess was released today. Her medication has been adjusted, thanks to a doctor who was willing to listen to my speculation about bipolar tendencies. We meet tomorrow with the practice that will take care of the transitional care when she returns to school next week (either a partial hospitalization program or an intensive outpatient, both of which will take place after school).

Tonight was back to school night at Princess’s school. It was not an easy night, since I didn’t know what to expect from other parents or from the teachers regarding Princess. Many of the parents seem not to know that anything has gone wrong. The only parents with whom I talked about her recent hospitalization were the parents of one of the girls who reported to the counselor that she was talking of stabbing herself. I thanked them, and their daughter, for starting the process to getting better. I tried to hold back the tears, but…well, that isn’t so much an option for me sometimes. I apologized for putting their twelve-year-old daughter in such a tough spot.

My tears brought some tears from this girl’s mom. She and her husband admonished me for apologizing, and said they are keeping Princess in their prayers. They wanted to pass along to their daughter our appreciation for having done the right thing. She told me that her sister had struggled with depression and talked of suicide, and that her husband lost a friend to suicide.

I still feel like a shell of myself. I’m sleeping more than typical yet not feeling rested. I eat because I know I must, not because I have a taste for it. Our priest, the school staff, Princess’s therapist, the executive assistant for my department are keeping a close eye on me, I think, not sure if I may shatter at any moment. But for Princess I am holding it together, I take deep breaths and I focus on how to move forward. One small step at a time.

Princess is back in the hospital. School started on August 25, and I have been monitoring her homework (checking her agenda book and comparing it to the completed work in her binder) and asking her about her school day and doing my best to keep the line of communication open. She met with her therapist on the Saturday before school started and again this past Saturday so she could first prepare herself to return to school and then process the first (partial) week of school to assess its success. Everything seemed fine.

When I picked Princess up from her aftercare program on Tuesday, I had a message that the school counselor wanted to see me. Princess and I gathered her things and sat down in the counselor’s office to talk. The counselor relayed that another student came to her to say that Princess had indicated that she was planning to bring a knife to school for the purpose of stabbing herself or cutting her throat. She’s never articulated a plan before, and never expressed thoughts so boldly violent. The counselor advised me that she would need written confirmation from some mental health professional regarding Princess’ abililty to return to class.

We made an appointment with the therapist, and Princess was vehement in saying she did not want to go back to the hospital. She later had an outburst that culminated in her locking herself in the bathroom, refusing to speak to me, and I told her through the door that if I could not get the key to work, I would call 911 and have them break the door down and take her to the ER in an ambulance. She came out, and finally admitted that her thoughts were too overwhelming to handle alone, and she thought she needed to go back to the hospital.

We arrived at the pediatric ER around 2:00. We met with the intake nurses and pediatrician and social worker. We waited for word about which hospital had a bed and would accept her into the program. I called and texted my husband (who was home with the boys) and my parents and my siblings with updates through the night. The food service people delivered Princess’ dinner to the adult ER, so it was cold by the time we hunted it down, but she ate it anyway. They fixed another dinner for her, so I ended up getting to eat something, too. The ambulance transport came just before midnight. I took my car and agreed to meet them at the hospital.

About halfway to the hospital, my car blew a tire. I sat at the side of the highway, sobbing so hard I thought I would vomit. My  husband called the pediatric ER staff, who called the transport company, who contacted the ambulance driver to  have him come back to get me. Another bus from the same transport company arrived a few minutes after we did, so the drivers kept me distracted with their chatter. I barely remember filling out the paperwork for the intake. The coordinator on the unit asked me if I had a ride home, and I asked her to help me call a cab. She did one better- she arranged for a transport voucher for me, since I wasn’t sure I had enough cash on me to pay for the 40 minute ride home.

I got about 3 hours of sleep before taking the boys to school and coming into the office. My boss is wonderfully understanding and supportive, and is allowing me to make my schedule day by day depending on what I feel I need. I don’t know what it is I need, though.

I am still standing, and I know that Princess is getting the help she needs. This is a different hospital than the one she was in during May. That program seemed to work then, but the doctor’s willingness to dismiss my suspicions of a biploar disorder bothered me. This hospital seems more open to the possibility that there is more going on than her anxiety/depression. And we will once again find our light at the end of the tunnel

It’s back to school time, which always brings a certain amount of angst to my household. This year, though, we have an extra something hanging over our heads.

As last school year rounded toward its close, Princess had a significant downward spiral.  She began to have thoughts of self-harm and a rising number of anxiety attacks. I got a call from the school nurse on a Thursday afternoon in late May telling me that Princess had tried to choke herself.  Twenty-four hours later, she and I were both sitting in a hospital room as we waited for a placement in a pediatric psychiatric facility.  She checked in on Saturday and checked out the following Friday, but did not return to school until mid-week, and only for the non-pressure events of the end of year carnival and final school day Mass.

We enrolled Princess in an intensive outpatient program over the summer, to deal with her anxiety and further develop both her coping skills and her socialization with her peers.  Upon the advice of the medical staff at the hospital, we took her off of her ADHD medication (stimulants often exacerbate anxiety disorders) and increased the dosage of her anxiety medication. While the journey is far from over, she did learn to identify the anxiety-provoking situations and ways to keep them in proper perspective and cope with them in the best way she can.  Much of what she has learned hasn’t been put to the test yet, but she has been more cooperative at home and less likely to freak out on her brothers (which is no small feat, given Hoss’ potential for anger outbursts as a result of his mood disorder).

I remain nervous.  While the elimination of the stimulants for the ADHD is likely a good idea (the hospital staff noted Princess’ ability to focus on her work without the meds, leading to a conclusion that her previous issues may have been driven by anxiety instead of inattention), it has been close to impossible to address the anxiety created by being in middle school and dealing with the school day.  Middle school kind of sucks, even for a “normal” twelve year old.  Kids can be cruel, either by intent or by ignorance.  Add an anxiety disorder and some established socialization issues to that mix, and it’s going to be a hard road for my baby to face.  And I am once again helpless to make it OK.

Seeing the kids on two Saturdays in a row was great. I hadn’t seen them for 7 months. I missed them so much.

Tyler and Tony are stronger and beefier. Their necks are almost as big as their heads, which is what their father looked like when I met him and it brings back bittersweet memories. They will both be playing football this coming school year for the varsity team and are quite proud of it. I’m quite proud of it. Because they are, I guess.

Tyler, ever the fair one, makes sure we get every minute with them that we are allotted. Not one more or less. He is very equa. He loves both his mother and father equally and wants to make sure we know it.

Tony on the other hand, plays things by ear and would be swayed one way or the other by the wind or a sneeze. He wants to make everyone happy. He has so much love oozing from his pores and loathes to hurt anyone’s feelings. Tender hearted.

Tony looks for something for his girlfriend at the swap meet and knows what he wants to get her. He just needs Alex to help him with his final choice and he’s set and happy with what he got her.

Tyler isn’t sure what he wants to get and is afraid to even call the girl he’s sweet on a girlfriend. I try to help him from a female point of view, but I find myself lacking. I’m not in touch with today’s teenager. Surprised? But Alex saves the day again and helps him find the right bracelet to go with the ring he picked earlier.

And Alex? I don’t even know where to start. She’s OLDER. I don’t know how else to say it. She’s 19, almost 20. She has her first real boyfriend and starting her second year at college. She has some adult issues to contend with. And she seems so young sometimes. She tells me she feels both young and old and I believe her since I was 19 once. But I was having my second child. Her. I was pregnant with her at 19 and I also felt as young as a child. A child having a child. As a reflex, I make sure she has all the protection she wants and needs to prevent having kids right now. I know almost 20 and 2 kids. I don’t want her to know it, too. Alex is smart and beautiful. Naive and very sharp. She’s compassionate and loving. I frequently get glimpses of who she really is inside.

I didn’t get to see Devon. I miss him.

My daughter is on a mild anti-depressant/anti-anxiety medication. For about two years (slightly less, actually) she’s taken it and it has helped.  She still goes to talk therapy on a regular basis, she still gets worked up over things, but I had the impression that her “worked up” is no longer getting in the way of her getting through the day.  I was wrong.

Every month when we have her medication management appointment with the psychiatrist, the doctor asks if Princess ever has thoughts of hurting herself or other people.  She always says she does not.  She told us that last Thursday, so we refilled the Rx with the same medication at the same dosage, because I thought it was working.  I was wrong.

Today I got a call from the school counselor that Princess was saying that she sometimes thinks about hurting or even killing herself. That she’s been getting messages through her account on one of the online game sites (the independent one with the upper age limit of sixteen, not one of the ones she accesses through Disney or Nickelodeon) with foul language and threats that this person is going to find who she is and where she lives. That after being upset by this person’s messages one time a couple weeks ago, she saw a knife in the kitchen and just wondered what it would be like if she just picked it up and stabbed herself so it would all be over.

I thought I was doing the right things to monitor her online activity. She does not use the chat room on this particular site, and when she is looking for games to play, alone or with her little brothers, I urge her toward the the ones allied with the children’s channels or ones that I know have a fairly strict filtering mechanism for user messages. I thought I had developed an open line of communication with my children about what’s going on in their heads. I was wrong.

The school had a speaker last week to teach the middle school students about cyber safety and cyber bullying. She and I talked about the presentation, and all of the things online that are OK and not OK to say or do, the things that are OK and not OK for someone to do or say to us. I didn’t think we had a problem. I was wrong.

I’ve got a message into the psychiatrist who handles her meds and am trying to get an appointment this week with the LCSW she sees each month for her other counseling.  We are going to review her messages tonight (the ones she has not deleted) so we can report the user sending her the offending messages.  I am going to protect my daughter and she is going to be OK. 

I really hope I’m  not wrong.

Today is Tuesday, March 16.  The day started fairly mildly- no one wanted to wake up, but we managed to get awake and fed and medicated at something approximating “on time.”  One year ago today, I think the day started just as mildly, but it didn’t stay that way.

By 10:30 a.m. on March 16, 2009, Hoss had run far enough away from the school building to have needed the police to be called.  His escaping behaviors and his total lack of understanding as to the reasons why I worried had become more than I could handle.  By noon, I had picked him up from the school and was on my way to take him to the emergency room to request a psychiatric consultation and recommendation for admittance for an inpatient evaluation.  The school counselor followed me to the hospital (regulations prohibited her from driving us herself) and, with the full support of the administration, she stayed with me for four and a half hours as we met with doctors and nurses and explained Hoss’ outbursts and his behaviors in which he put himself in harm’s way.  After the counselor left, I spent a few hours with Hoss in the psychiatric wing of the hospital as we waited for paperwork and transport to the child and adolescent unit at Sheppard Pratt.  My husband came by and stayed with us until after dinner and followed us to the pscyh hospital.  My mom spent the night in Hoss’ bed, since it was nearly midnight when we returned home, and I didn’t want a tired, worried grandmother on the road.

I am sure Hoss has no memory of the date, and only hazy memories of what happened that day.  But it is going to eat at me all day long.  He’s come so far in the past year, but we’ve had some bumps of late and I fear for what they mean.  His regular monthly appointment with his doctor is tomorrow, and it may be time to adjust medications to account for his growing system.  I have learned so much about pediatric mood disorders in the past year, and yet I have so very much that I still don’t understand and that I can’t handle.  I have a lot of years ahead of us that I need to deal with.

It’s not until he mentions it that I realize that he’s funnier than he’s ever been before.  I’ve been sitting here, drinking coffee with him—my middle brother, 3.5 years my junior—for an hour, maybe.  And I’m just now realizing that I’ve been laughing with him far more than I usually do.

Funnier, yes—and talking fast, loud.  I can barely get a word in edgewise as he quips, his words darting faster and all around me.  He pulls faces, laughs, then stops.

I feel stupid, because I maybe wouldn’t have noticed if he hadn’t said anything about it.  Quieter, now—“I’m going to go see somebody, one of the counselor’s at school.”  He talks about how he’s fucked things up, how he lost his girlfriend of more than a year by being stupid.

He’s the same age I was when I fucked things up.  21 and change.  The age where everything starts to come together, when your body feels electric with the burden of the future and the prospects of freedom and responsibility start to wind themselves around your ankles.

And I envy him, if only a twinge, before I am suddenly scared for him.

***

(remember)  What it’s like to be told in a room by a man that you have a chronic illness that will never go away.  And it’s something that’s inside you—it’s something that you’ve always thought is you.  Because it’s in your head—in your brain—it’s hard to separate out the sick part.  You start the never-ending data-mining, the perpetual jump through funhouse mirrors—you decide what to keep and what to put away in a box marked “other.”

You are stricken by two dual forces.  One.  You would never wish this fate on your least favorite person.  Think about childhood bullies and mean bosses.   You may wish for them to die, but you’d never wish for them to feel this way.  Two.  There’s a genetic component.  A much higher likelihood than you’ll admit that someone you love will do this too.

These forces get inside you and they explode your heart.  Pieces of it go everywhere, flying into all of those they love.  You understand that quote about your heart walking outside of your body.  You live with it every day.

***

And still, I dare to dream about a normal life, ignoring the fact that I took a left turn from normal years ago.  Once upon a beautiful time, I had a coherent line of sight.  I was engaged, had a wedding planned for June 14^th, 2008.  I wanted to go to school, get married, start thinking about children.

The words “bipolar disorder” make everything so fucking complicated.  When they find out that we’ve been dating for seven years, even casual acquaintances ask about a ring.  I laugh it off.  I say that we’re taking our time.  I don’t mention that we were engaged.  I don’t tell them that we’re not engaged now because I contracted a case of the crazies and went about fucking schoolboys while my fiancé worked at 5 AM on Saturdays to pay for my ring.  When I think about it, my jaw starts to hurt from the clenching of my teeth.  My lungs are filled with air that won’t be pushed out.  I take a look at the path at the fucked-up path of burnt-out bridges that lay behind me.  How do you explain this?  How do you make sense of something that feels so senseless?  How do you do anything but move forward, blindly, spouting platitudes and bullshit about taking your time.  Taking the long way.  Going the whole distance around your ass and still, somewhat improbably, coming out ok.

***

In the review session for my neuroscience final in my first year of medical school, the question is posed: “What is the heritability of Bipolar Disorder?”

The answer I’ve learned to parrot is:  “Autosomal dominant, but with partial penetrance.”

In my head, it sounds more like: “You are playing Russian Roulette with your future children’s lives.”

In these moments—among others—I am forced to contemplate the ghost-children who will someday tumble out of my womb, with so much potential for brilliance and pain lying latent their skin.

In the dark, I will whisper to them that my genes do not determine their fate.  Then—and now, even now—I will whisper it to myself.