Six Months...

Six months ago tomorrow, I started this blog. October 21, 2011. It was a week, maybe two, after Benjy entered an inpatient psychiatric unit, because his hankering for death had become so strong I no longer felt I could keep him safe on my own. That was a dark, dark time.

Benjy has flirted with suicide, off and on, for a long time. He has had periods, brief and extended, of dysregulation so severe they have thrown our entire household into despair. His disability has challenged my parenting abilities, disrupted my equanimity -- what little I had -- again and again. How do you parent a child who is so frightened of vomiting he literally shakes every time he gets a stomach ache? Who is convinced the word will end, very soon, and we will all be plunged into icy darkness? Who believes said world is filled with miscreants and evil-doers, and that none of us are safe -- no matter how many times you tell him about the doctors and teachers and social workers, and so on, who strive every day to make our world better?

How do you parent a child who does not smile, or laugh, for months on end? Whose despair curls him up in a fetal position on his bed, when he ought to be out riding his bike or shooting hoops? Who cries out in his agony of loneliness, I'm lonely! Help me to not be lonely! and you know there are no kids who would want to be with him, so you can't help him?

Readers, it's hard. It's a heart-rending business, this Asperger's-anxiety-depression-suicidality. Parenting Benjy -- if it all works out -- will be my great work, my magnum opus, the one real achievement in my life. Sure, I've completed a PhD, published in some good places. But those pale in comparison to guiding Ben through life and keeping him safe. I think I've done a decent job of it so far -- and I know my limits, will call in the reinforcements when I need to -- and I hope that will continue.

But here's the beautiful thing: our lives, Ben's and Lars's and Saskia's and mine, have gotten so much better! Maybe it's being on the right meds. I know FOR SURE that being at the right school helps a lot. And finding -- finally! -- some good friends, not many but a few, which is enough. These things have bred optimism in my boy.   He smiles now, laughs, is sometimes silly. How happy that makes the rest of us!

A lot has happened in the six months since I started this blog. We hit rock bottom and began our ascent. I stopped working and opened my life up to a measure of peace. We got more information about Saskia's illness -- not enough, but more -- and she had her ups and downs. Wow. What's in store for the next six months?

I don't know, but I've got some stuff to look forward to. I've got a whole bunch of essays and stories out on submission; I suspect there will be good news and bad on those. We have Saskia's voice recital coming up, and I love hearing her sing -- she's a lyric soprano, has a gorgeous classical voice. If she becomes an opera singer someday, which is what she thinks she would like, I will not be remotely surprised. That kid has talent! Things will continue to go swimmingly between Lars and me, of that I am sure. More late-night walks with the Hellacious Hound to look forward to -- I love those!

And then there's Ben. I hope he will continue to get stronger and happier, and fill our lives with his own special radiance. And lots of arcane knowledge, which is his specialty.

Readers, what's changed for you in the past six months, and what are your coming delights?

Ugh

This is the longest space between posts yet. There are a couple of reasons for long spaces between posts:

1. We're happy, regulated, and not in train wreck mode. (Who wants to read about The Orient Express with no murder -- just a bunch of prosperous, well-dressed folks eating caviar and gliding across the landscape in all their poshness?)

2. We HAVE been in train wreck mode and therefore writing is too hard. Sometimes sheer confusion -- or exhaustion -- keeps me silent.

The past week we've been a bit of both. We were worried about Saskia's health, and worried about Benjy's school placement. We've had half-answers and full answers. some we like, some we don't.

The worst first: Saskia.The better part of the past 24 hours I was supremely happy. I had no further information about Saskia's lupus-like symptoms (lupus can take years to diagnose) but we'd gotten her in to a nurse practitioner at a dermatology practice, because the lesions she had developed on her arms, legs, trunk and face over the past six weeks had gotten worse and were multiplying.

Her PCP did not know what they were. The rheumatologist said they did not look lupus-like. So off we went to the dermatologist. (If you wait a few weeks I'll be writing about her other ologist -- the hematologist. Isn't life grand!)

I'm going to start abbreviating because I'm sick of writing out these names. The derm ruled out our greatest fear -- DO WE HAVE BEDBUGS????? YUUUUCK!!!!!! -- and said it WAS atypical for a lupus rash but she would test for that. The other thing she was going to test for was something called PLEVA.

WHATEVER YOU DO, DO NOT GOOGLE PLEVA.

I Googled pleva. I got scared. I exxed out. But yesterday (hence my 24 hours of happiness) the NP called to say, yes it IS pleva, but it's acute pleva as opposed to chronic, and what that means is, after a month or two it will be gone forever.

I did a little happy dance. Because we can live with two months, right?

So I kept on feeling good, had an enjoyable writing group meeting, and when Lars got home at 11, the two of us took the hellacious one for a walk. That's when the somewhat less than 24 hours of happiness leached away. Because Lars said, "Did you actually READ those articles on pleva? Because it doesn't seem to be as benign as the NP said."

Crap.

I decided to wait until this morning to delve more deeply into the charming subject of acute pleva. And someone must be lying, because the story I got from the NP is incompatible with what I read on line, which is that you can be stuck with these lesions FOREVER. The pictures made me gag. Saskia's are not so offensive -- it looks a bit like she has measles -- and not so plentiful. But she is a FOURTEEN-YEAR-OLD GIRL! She is profoundly mortified by her face and body right now. the other day when it was almost 80 degrees out she wore a sweatshirt all day in her un-airconditioned school. she came out totally dehydrated.

My poor, poor girl. I would give anything to take this from her. I wish it were me -- what would it matter? but for HER? And if she inherited my breast cancer gene she'll have a whole lot of impossible, maybe life-changing decisions to make when she's a young woman, I hope pleva and all her other lupus-y shit is enough. Whoever makes these decisions (her genes, I guess) had better have some compassion.

It's hard not to wallow is despair right about now, I look at other families whose kids don't seem to have any  medical or psychiatric issues, and I think, WHY US?? Of course, I realize there are hidden issues for just about everyone. but still, we are surrounded by healthy, happy kids here in our town -- and our kids have been stricken so hard. It is NOT fair. (And now I'm hearing the voice of my Dad saying, "Well, life is not fair, Anna." Wise words from Dad, but they do not really help -- not then, not now.

But I DO have some good news! My fears that our school district was going to yank Benjy from the Joy School, ostensibly in his own interest but really because it is extremely expensive? Those were UNFOUNDED. The district is behind us. I suppose that could change at any time, but for now we're good.

SO: Somehow I have to keep slogging along. We all do. If anyone has any ideas for hiding dark lesions on a girl's legs, arms and face, I would love to hear them.

Today, at least, she went out in a skirt and short sleeved shirt -- even if she did insist on wearing pantyhose.

THAT, Readers, is progress.

Halcyon Days

It's been five days since I've blogged about Ben, Saskia, Lars, or the Hellacious Hound. I guess that's because things are going pretty well. For the same reason that the novels, TV dramas, and movies we all love are filled with tension and obstacles as opposed to serenity and happiness (note that the happy marriage usually occurs at the end), no one wants to read a blog about smooth sailing. Do they? Boooring.

As I look over at my boy slumbering peacefully on the adjacent couch -- knocked out by his nightly meds -- I'm reminded of the many, many nights when sleep was a desperately needed reprieve -- for him and for me. I think the two of us, on his most dysregulated days, longed for the peace a protracted sleep would bring. Sometimes, I'm ashamed to admit, I slipped him an extra Ativan in the hopes it would make him drift off. We both needed that. All four of us did.

Now, Ben is experiencing success. As a fencer. As a friend. His stable of comrades just increased one hundred percent. There were three more or less reliable friends. Now there are six -- well, okay -- five and a half. These new buddies are boys he met through the club I started -- a club for Aspies who share an interest in the computer game Minecraft. As of tomorrow, three of these boys will have had Benjy over. And that, Readers, is an astonishingly lovely gift. He's had two hour-plus phone calls with one of them. Will wonders never cease?

But still, I can't helping being on guard. Because quiet spells have never lasted. Ever. In eleven years we've never had more than a couple of months of easy living. Things have always gone south. So I cautiously embrace the halcyon days, but I do not trust them.

One of the happy things in my life right now is the loss of work. I am more relaxed, more present for my family, than I have been in years. I have not browsed the writing or education jobs on Craigslist since November. What a relief that is! And we are making it -- just. I feel sheer joy right now. I love my life. How long has it been since I was able to say that? Not sure. Several years, at least.

The best thing, apart from Benjy's general happiness, is that I am writing again -- and writing things that I'm passionate about. I've put my novel-in-progress aside. Time enough to go back to that when my agent sells the other novel and I have to finish the new one. So right now I'm writing personal essays. I ALMOST sold the essay about parenting Ben to O, the Oprah Magazine. The editor there loved it but they don't really publish parenting essays. So she's invited me to write something else for the magazine, and I have pitched an essay about coming to terms with my dead sister and the sisterhood we never shared. Now that I am not thinking about Ben every single minute I can process some of the other stuff in my life. I have another magazine in mind for the Benjy essay, and I have several other ideas for articles, including one on the price of disability -- the cost to people's (usually mothers') careers and the impact on family finances. I am also planning a profile of Ben's inspirational fencing coach (who left Cuba to come to America with literally nothing but the clothes on his back, and who, among other things, teaches fencing to the blind and to cancer patients). I am SO excited to be writing again!

Of course, keeping this blog is writing, too, and I have found it to be therapeutic and a lot of fun. People from all over the world are landing here. How cool is that? I don't have any plans to abandon it. I might have to rethink the content, though. If I can no longer  write about parenting a child who wants to die, I will have to find other things to write about.

I promise they won't be boring essays on how great our lives are going. Well, okay. Once in while they probably will be.

Trolololola -- or life at Chez Delaunay

I wanted to follow the sad video with one that will make you laugh. Benjy found this last night. Good mom that I am, I watched it with him a few times -- don't I deserve a medal or something? His peals of laughter -- okay, OUR peals of laughter -- made it all worth it.

We had the distinct pleasure of hearing some highly dramatic and operatic renditions of this -- song? for the rest of the evening. Long after I thought he was asleep I passed Benjy's room and heard him trolololling, sotto voce.

Here's the thing: my child has a voice. He knows how to sing. We never knew that until this month. All of a sudden he's singing, and I can't get enough of it. If I have to listen to him mimic this bizarre dude trolololling, so be it. I'll take it, baby!

P.S. Are you going to thank me for the ear worm? You're most welcome!

Ben the Runner

Benjy is an odd mix of self-confident and self-despising (more often the latter). Today when I picked him up from the Joy School he piled into the car, glowing, and said,"I ran a lap around the courtyard in TWENTY SECONDS!!"

"Wow," I said. "That's good."

"Yeah," he said. "I'm a good runner. I think I can run about 15 miles per hour. Is that really fast?"

I had no idea, but I told him it was.

He continued, "I run with these tiny steps, like Sonic, and I'm about as fast as him, too. My legs are a blur."

Sonic is a video game character. I presume he is a fast runner.

When Benjy has an inflated sense of his own abilities I usually go with it -- not because I want to raise a kid who is "the best" at everything (a lot of parents seem to subscribe to this parenting philosophy) but because it makes me happy to see him feeling good about himself. His more frequent attitude is, I'm the worst, I'm worthless, don't waste your time with me.

But recently we've been seeing this other Ben. This excessively confident child. And what we haven't seen much of are the self-inflicted injuries that accompany his dysregulation, his tilt. When his body is tight with anxiety, and his mind, too; when he is suffused with sadness and self-loathing, his body exists only to be battered and insulted. Even my caresses do not drive off his injurious impulses.

Bit it's been weeks since I've seen any of that, except for one compulsive hurt -- biting his lower lip bloody. Otherwise it's been peaceful around here, and his body has been healing. The last hair-raising episode I can remember was when he was in the hospital, back in October, and taped a sheet of paper with a bulls-eye and the words "Shoot Here" to his forehead. That was not a good day for Lars and me. It was definitely not a good day for Ben.

Here at Chez Delaunay we take things one day at a time -- it's a little less stressful, and less devastating, that way -- and this day has been a great one. It's Saskia's 14th birthday, Benjy is a Runner, and I am sitting nearby them, listening to them enjoy each other's company. It was only a month ago that we were in as bad a place as I could have imagined (okay, maybe not quite as bad -- I frequently imagine worse). And now,  things are so much better I could cry.