Wednesday, July 31, 2013

Count Down

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

Oh, I can barely wait.

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

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

Saturday, July 27, 2013

A New Diagnosis for Me

"No, really," I told the Universe. "It's OK. I have more than my share already."

But the Universe can be heartless. It silently, and without apology, handed me another one.

It's called fibromyalgia. It sucks. But it explains almost all of my symptoms since the winter: pain everywhere, enormous fatigue, GI stuff, revved-up anxiety, and depression. I had a brief reprieve -- maybe two months -- and now the symptoms are back with furious intensity.

This fibromyalgia is most likely the result of persistent and prodigious stress over the many years of trying to keep my child safe from his own self-injurious impulses. Of trying to keep him alive and happy (the latter quite unsuccessfully) and never knowing from one hour to the next when or where the next bomb was going to strike.

Man, that is one hard job. I kind of feel like I've earned a ginormous salary but someone forgot to cut my checks. At least, when I let myself think about it, which is not often because it is too damned depressing.

So I have to figure out how to manage these symptoms AND live this new life that is not bounded on all sides by disability and crisis. (Although I guess it is -- my own and not Benjy's.) I started a medication last night because there is only so much sleep you can do without until you start obsessing about Fatal Familial Insomnia (remember that? Yes, I am obsessed with it and have written about my obsession in the past. That has got to be one of the worst ways to go. I'll spare you the agony of a link to a site about it. You're welcome. ;)

Pain all over = no sleep. So I started this new med and of course I feel like crap today -- completely drugged up and still in pain. Because meds and I apparently DO NOT MIX. Kind of like Vicodin and Vodka.


I find it all very confusing. So off I go into the world of medical research once again. I'll let you know when I figure this stuff out. I think I will, if I can muster the energy to put in some effort.

If anyone out there has any ideas, let me know!

Friday, July 26, 2013

Seven Endless Days

 That's how long till we see Benjy. It will have been a month. That's about three weeks longer than we have ever been completely apart, and I think that one other week was before it all went downhill. (I'm guessing a trip to Germany when the kids were really little -- just Lars and I went, and they stayed with my folks.)

Readers, I cannot wait.

I had this sensory experience of him the other day, while sitting in my therapist's chair and trying to listen to that part of me which is so sad, to hear what it had to tell me. I felt him as though my arms were around him and my cheek was laid on his curly head. I felt the roughness of his hair and the substantial warmth of his body.

He was turned away from me, but the part of me that is sad allowed him to turn to face me, and to return my embrace. My god, that felt good.

I miss the physical sense of his presence, and I miss his footfalls upstairs, when I am just beneath him, and his beautiful green eyes. I miss his rushed, slurred speech, which I guess is a side-effect of one of his meds -- although I get to hear it every might when  he calls me. I wait for those calls like you would not believe.

He sounds so good on the phone, as if they switched him out with some other kid who is happy, and also a very good mimic.

But I think it's really Benjy who's happy. I am so thankful for that.

And I'm getting lots of time with Saskia, which is a gift. The pleasure of just sitting on the couch and watching something dumb on TV together! (And the bizarre experience of having to ask her about something we heard on Family Guy, and having her say, "Uh, Google it." And then, hastily: "No, don't!" Oy.)

Last night we watched this:

So. Much. Fun. Even Saskia loved it, after a few minutes of grumbling and fiddling with her phone. (She's convinced nothing good came out of the 80's except her cousins. I could not even wheedle her into conceding that Jessica Lange's outfit at the end of the movie was kinda cute. Then again, Saskia is not easily wheedled into anything. She was born highly opinionated.)

In publishing news: you will be able to read something mostly funny -- yes, funny! -- by me in the fairly near future. Two things, actually -- the first in O Magazine, in October; the second in More -- but who knows when? Publishing is a sloooow business. I'll let you know when I know.

So yes, I do depart from the usual pathos every so often. Long-time readers of this blog have actual proof of this. I remember writing a few funny posts in the distant past, when life seemed to hold more humor inside it.

Anyway, it's really too gray outside to write anything else. Or else, too gray inside me?

More soon, Dear Readers. And remember:

Thursday, July 18, 2013

Walking in My Son's Shoes*

I think I know now, at least in part, what it feels like to be Benjy. How hard it is to catch your breath when you are panicking. The tightness in your throat and chest that makes you feel you might die. The wish that you could just curl up on your bed all day, coupled with a pretty sure idea that if you do so you will be just as miserable as you will if you go out and try to live your life.

Oh man, that feeling just sucks.

It's called fear, I guess, and it has all these physical parts to it that you would never guess if you have never had an anxiety or panic disorder.

I've had anxiety my whole adult life. I got it from my mother, and she got it from hers. And Benjy makes four of us. At LEAST.

But never like this. Like my boy has it. Never the kind of thing that makes you feel you've swallowed a bee and are going to asphyxiate because it stung your throat. Never the fear that makes your heart work so hard you think it might break with a mighty crash.

Oh, no. Not until I had the leisure to be panicked. To stop long enough to be anxious for more than a little.

I do not like this way of being at all. Most of all because it makes me so sad for my child. I guess it's the difference between sympathy and empathy, which is not simply a semantic one. I always felt compassion toward him. I always will. And there will always be parts of him, of his experience in the world, I can merely sympathize with.

But now I have palpable evidence of his suffering. I have felt it, too. And what kills me is that, if I had felt it four years ago instead of now I would have hurled a lighting bolt at the metaphorical feet of our school district and stopped the madness in its tracks. The madness of trying yet another service, another program, another school, that Just Wasn't Going to Work.

I would have found the place he's at now and I would not have rested until I'd gotten him there.

I know, talk is cheap. But I would have been there fighting, red in tooth and claw. And maybe he would have suffered less.

But he is where he needs to be now, and for that I am so grateful. He sounded so GOOD again last night! I hope this does not end.

And now it's time for me to start taking my tiny steps, panic or no. I've made a resolution: I must leave my house every day and DO something. Coffee with one of my wonderful friends or my brother or sister-in-law (or both). In a couple of weeks I hope I can go farther afield. I have a great therapist who will help me, I know.

The best therapy of all has been the responses I often get, even from total strangers, to my writing. Oh, wow. Talk about heart-lifting! Whether it's blog readers or readers of my published stuff, so many people CARE. I can't believe it.

And whether they're compelled by sympathy or empathy (both wonderful impulses), they feel the urge to let me know.

My god, what a gift, to me and my family. That's what's going to break the panic, I think. Just knowing that there's so much goodness out there in the world, and that people all over the place are rooting for us.

Sometimes I feel like the unluckiest person in the world. (Of COURSE I know that's not true, but emotion is not rational or it would be called rationality. ;)

But when I think about the community that has gathered round me, in person and in the ether, I feel like the luckiest person in the world. I am working on reconciling those polar feelings -- but really, logic is overrated. Sometimes it's better not to search for meaning in irrational things.

* Holy crap, I wrote this entire post without making a single typo. This marks a new high in my life as a Tourettic blogger. (Unless Blogger's spell checker is broken, because I notice it did not flag the word "Tourettic.") What's next? Sitting down for twenty minutes without having to straighten a picture or re-arrange the rug tassels? I can only hope. ;)

Tuesday, July 16, 2013

Benjy Update. And Me Update.

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

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

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

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

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

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

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

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

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

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

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

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

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

I wonder if a bunny would help?

Sunday, July 14, 2013

"Benjy, Awake" is Live on

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

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

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

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

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

Saturday, July 6, 2013

One Foot in Front of the Other

It feels like a thousand years have passed since I last blogged. I feel like a different person, living in a new house. A new life. Even though I'm sitting here on my usual butterscotch-colored couch, in front of my same old noisy air-conditioner, and my back is achy in the same way it usually is when I first get out of bed.

I am me, and I am here, and Lars is sleeping with the covers off him upstairs in our bed like always, but everything is different now.

I am trying to figure out how to put one foot in front of the other and move forward now that the person whose care has been the primary focus of my life for twelve years (give or take) no longer lives with us.

And it is damn near killing me.

Talk about mood lability? God knows I've talked about it, here on this blog and to doctors and  therapists and family and friends, for years. I have it now. Happy. Crying. Dully silent. Talking so damned much my friends and family cannot stand to be with me.

My heart is ripped in half, that is the problem.

We left Benjy at his new school on Wednesday. It is one and a half hours away from home. I guess it IS home now. His, anyway. He was FINE with all this, because it is a place with lots of kids like him, and lots of animals for him to love and care for (and do it right): a farm with sheep and horses (which he can ride if he can muster up the courage to do so) and chickens and cats. A family of foxes live near the barn, and when Lars and I visited we saw a couple of fox kits wrestling in the riding ring.

"What ARE those animals?" I asked, squinting at them as we pulled up to the barn with our very nice tour guide. He informed us that they were the younger members of the school fox constituency. Lars said, "Benjy will want to hold them." And we all laughed.

The day we dropped him off we had lunch with my best friend, who lives not far from the school, and I felt elated. I could see my life opening up before my very eyes. We talked about ME, and what I might begin to do for myself now. It was extraordinary, and in two hours I only thought about Benjy once or twice because he had done so well when we left him, and I knew he was at an amazing place. He'd gone in the pool with a few kids and played some sort of water basketball, and  he'd make lunch plans with another boy, and as we drove to our friend's house I was weepy with joy.

In Benjy's classroom, along with a lovely teacher and assistant teacher (who also happens to be the farm manager and who advocated for Ben to be in that classroom because she recognized him as a kindred animal-loving spirit) live two rabbits. Well, technically one of them lives just outside the classroom, because, as Ben informed us, that one is a male, and the inside one is female, and letting them live together would not make a lot of sense.

How that made me smile!

I asked him on Thursday when we talked briefly around eight p.m. whether he'd been able to hold the rabbits during school and he said yes, he had. That made me smile, too.

 I haven't smiled so much since.

Thursday was the last time I talked to him. Every night since Wednesday I have called. Wednesday's and Thursday's conversations have been difficult for us both. I hear from his housing staff and his therapist that he is doing quite well during the day. Playing LOTS of outdoor sports, swimming in the pool multiple times a day. I know he's been to the barn once or twice. But at nighttime there is less to do, and homesickness sets in.

After our first call I thought I was going to die. He cried, and said so softly we could barely hear him (I guess he did not want anyone around him to hear), "I can't do this, Mom. I want to be home. I miss you,"

I tried to keep my voice upbeat and bright.

"Sure you can!" I said, feeling like a miserable felon. "You've done FAR harder than this! And remember how sad and lonely you've been at home. We could never give you what you have at your new school." But he continued to cry quietly and I had to hand the phone to Lars.

What could I do but take a Klonopin, my new tranquilizer of choice, and go to bed? But as is my new normal, I didn't sleep very well.

Last night it took a while for me to reach someone in his house (they live in houses there, not dorms). I always speak with the house manager first, which is good because I get all the details I need. Benjy is allowed to call us, too -- we had to provide him with a calling card for the purpose -- but so far he has not. So last night I called and called, and when the staff on duty finally answered -- these folks are ALL so amazing, I cannot tell you -- he told me Benjy was tired had gone to bed. He had considered calling us and then decided not to. It's just too hard, he had said, and I will just ask them to take me home.

Oh my god, that hurt. And yet, I believe he was thinking of us, too. He knows how hard it is for us to hear the pain in his voice, and to endure his pleas to come home. (He also probably realizes such pleas are futile.)

In one very long month we will begin the process of regular visits -- first on campus, then in the community, and finally -- every other weekend -- home. Until then all we can do it talk on the phone if he will allow it.

I am trying so damn hard to hold it together. To not swing from happiness to sobs to peace to gloom in the space of three hours, I guess I am getting a taste of what it's like to be Ben -- although I hope I will never feel the relentless, soul-crushing depression that has been his dominant way of being for most of his short life.

So here I am, with a house empty of everyone except Lars and the Hound, and so much I could do I can hardly bear it. How do you manage that? How do you learn how to handle openness at age fifty when you have lived on alert, your sole focus quenching the fires of psychiatric crisis, keeping your child, your family, and yourself intact since you were forty? What will I do when I'm not driving to hospitals several times a week, doling out an ever-growing cocktail of medications, twice, thrice, a day? When I'm not calling the crisis team at nine p.m. to get him a bed in the psych unit because I fear I cannot keep him safe at home? Watching him during his waking hours like a hawk, but pretending I'm not? How will I deal with no longer yearning for the sound of his van pulling up to the house and fearing it at the same time? Living life by the hour and not by the month or year, or lifetime?

Readers, I have no idea. All I know is that I am lonely and I am puzzled, and I am desperately hoping he soon misses me less than I miss him. And that he grows to love his new home. Our home has changed drastically, at least for the time being. I hope I can grow to love it the way it is now.

Right now I am just waiting to speak to him when he feels he can, and also for the next text from my darling Saskia, who is in Italy in her opera program. This is the best thing that has ever happened to her, and one of my crowning achievements that I was able to make it happen for her. Although really, the achievement was and is hers. All I did was scrounge up the resources to let her go once she was accepted.

Early readers of this blog might remember my old mantra: One day at a time. I have a new one now:

One foot in front of the other.