Monday, April 30, 2012

What We Have

Recently I read a very good memoir by a former colleague, Amy Boesky, called What We Have. It's about her family's struggle with breast and ovarian cancer -- lots of these folks had one or both, and some, like Amy, took steps against getting them (read: prophylactic surgeries).

Amy and I have a lot in common. And the title of her book makes me think about what WE have.

We, readers, are the POSTER FAMILY for disability and illness. I feel like I should get a book contract simply for being who I am. (I guess I'd have to write the book at some point, but still). We should be the stars of a Lifetime movie ("A family ravaged by disease and death, but bound by love." Ugh).

So, are you ready? Here's what our families (Anna's and Lars's) have, all mushed together and in no particular order:

Breast Cancer -- on Anna's side brought to you by the letters "BRCA" and the number "1" (the dreaded BRCA1 gene mutation); on Lars's by age and menopause and who the hell knows what else.
Prostate Cancer (again, courtesy of that incorrigible gene)
Sensory Processing disorder
Tourette's Syndrome
High Cholesterol
High Blood Pressure
Anxiety Disorder
Panic Disorder and Agoraphobia
Uh...what else? Oh yeah, dementia, possibly of the Alzheimer's variety
Polycethemia Vera (rare cancer of the blood)
Acute Pleva (that skin disease I warned you not to google in a previous post)
Possible Lupus (okay, we can't take credit for that one yet)
Too much smoking (is this a disease? maybe not but it might become one)
Possibly some tippling
Generalized weirdness and chronic studentitis (if you guessed that one's on Lars's side you'd be right)

I know there's some more stuff but I can't think of it right now.

In the spirit of full honesty, I'd like to inform you that a slight majority of these ailments come from my side -- at least, the traceable ones. The mental health issues are more nebulous, but I think they come more from the Teutonic half than the Jewish half. Lars might disagree with me there.

All four of us in the nuclear Delaunay family have things gone wrong with us. And so do our extended families. Dr. Boesky, we put you guys to SHAME.

What I like to think about us is that we're INTERESTING. We're not your average vanilla family. We've got stuff going ON. And I've got an endless supply of fodder for my writing.

Cool, right?

Saturday, April 21, 2012

Writing Dilemma

As a fiction writer, I have the infinite pleasure of dreaming up stories. Anything goes with fiction. But what about memoir?

A year ago I started writing personal essays. It all began when Benjy was seriously in decline, and the writing was more therapeutic than anything. But after six months I ended up with an amazing piece, so I changed all the names (to the ones you see on this blog) and sent it off. I decided to eschew my usual publishing haunts (literary journals) and try for a glossy magazine. I chose O Magazine and the editor there loved it, but alas, they do not publish much in the way of parenting pieces, so they passed.

So I decided to send it to The Sun, a gorgeous, New Yorker-esque literary magazine where it now awaits a decision. In the meantime, I wrote an essay about my relationship with my deceased sister, and a short (800-word) essay about parenting Benjy -- an up-beat one, but it does refer to his mental health issues and my concerns about his functioning in later life. This time I used his real name.

My dilemma, which is any personal essay writer's dilemma, is how do I deal with the fallout when I reveal things about others that could be hurtful, now or later? That was the reason I decided to blog pseudonymously, and to change all the names in my long essay about parenting a child who wants to die (although I have not changed my own name in that one). All of the essays I've written in the past year reveal things about me AND the other person that that person might not like -- all true things, but still.

In Benjy's case, he knows I write about him but he has never read anything I've written. He owns his Asperger's and his mental health issues -- he is not ashamed of them,  and he himself sometimes brings them up with others, even other kids.

But what if he reads one of my essays in print when he's sixteen, seventeen, and doesn't like what he sees? Do I have the right to publish this stuff, to think about myself -- for once! -- and consult my own desires? Because this is stuff I want to write, and I think people would want to read. Lots of people struggle with one thing or another -- most of us do -- and reading how someone else has dealt with their challenges helps us. I know it helps me.

What I do know is that I'm going to keep writing memoir. I love it, and I think I have something of value to contribute. The question for me is, do I change the names of others -- and if so, do I have to write under a pseudonym, or is changing their names enough? I don't want to hurt Ben, or anyone I love (or even just like), so I'll have to figure this out.

And that's what I'm working on this morning with my cup of coffee and a warm hound by my side.

Friday, April 20, 2012

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?

Sunday, April 15, 2012

Contact me!

Hi all,

I just realized it would be a good idea to have an email address connected to this blog. (I'm not always the brightest star in the galaxy...).  So, should you want to contact me regarding the blog OR JUST TO SAY HELLO, here it is:

I also futzed around with the layout of the blog, adding a "follow by email" button and a "favorite posts" button. (Blogger is TRES COOL!)

The email address, if you forget it, is in the profile on the right side.

I hope to hear from you!

Friday, April 13, 2012

Addendum to Last Post

I left something out of the last post.


I like living with a dorky hobo! Just in case someone misunderstood me. ;)

Thursday, April 12, 2012

Sartorial Deficiencies (Or, Living With a Hobo)

Last night, Lars and I went before our town's Transportation Management Committee and pleaded for a guardrail to be erected  along our property line. We live on the corner of two rather busy streets, and our house is set into a sort of bowl, below street level. Over the past six years, three cars have hurled themselves down our declivity at night, and two of them have smashed into our house.


So, I prepared a presentation, including narratives from police reports and a cool map of the property complete with colored lines representing the trajectories of the three cars (courtesy of Lars). I put on a semi-respectable outfit (read: black jeans, shell, jacket, none of which were rumpled) and a little makeup. I made sure my fingernails were clean.

I may not achieve the perfection of Saskia (not even close) but I am not a TOTAL slob. Only a little slobby.

Well, we're sitting there listening to an ENDLESS presentation by some crunchy bike folks who want biking lanes on the roads, and listening to the HIGHLY ANNOYING guy to Lars's right go on ad nauseum about how his wife will NOT TOLERATE white lines on "her" street (I know, you couldn't make this stuff up) and then it's our turn.

Lars had asked to play a role in this affair so I allowed him to hand out his little maps. and that's when I saw the hole in the arm of his green and blue striped rugby shirt. Right near the elbow. A large, round hole.

My heart sank. I looked a little closer and noticed that the whole shirt looked kind of dingy. Like it maybe hadn't been washed since four of five wearings ago. And then I tried to remember him leaving the house this week in another shirt and I couldn't. HE HAD BEEN WEARING THIS DINGY, HOLEY SHIRT TO WORK FOR AT LEAST A WEEK.

I thought I was going to die.

"You have a HOLE in your shirt!" I hissed.

"Yeah?" he said, grinning.

"You look like a hobo!"

"Hee hee," he replied.

As if that embarrassment wasn't enough, I noticed he had two sets of reading glasses in use (or disuse). One perched on the top of his head, the other hanging from the neck of his shirt.

"Do you REALLY need two pairs of glasses?" I snapped.

He looked at me with raised eyebrows.

"These are two different strengths," he said, sounding hurt.

I am married to the world's dorkiest hobo. I miss the days when he only wore black turtlenecks and was this blond, European hottie in black turtleneck and blue jeans. It was a lot of black but you can't see dirt on it, at any rate.

Fortunately the Traffic Committee did not hold Lars's sartorial deficiencies against us. We got the guardrail we asked for.

But here's the scariest thing of all. This morning when I noticed Lars was wearing the green and blue rugby shirt again, and that his pants looked a bit ripe as well, I sternly sent him upstairs to change.

And Benjy, who was sitting at the table eating his waffles, said, "I'm on your side, Dad! Who CARES about that stuff, anyway?

Oh joy, now there are two of them.

Tuesday, April 10, 2012

6 Reasons Why You Need an Advocate

If you've got a kid on the autism spectrum, here are six reasons why you need an advocate:

1. She knows special education law a lot better than you do (probably).
2. She knows how to talk about your kid's needs in a way that makes your TEAM sit up and listen.
3. She's not going to burst into tears during an IEP meeting, the way you might (okay, I'm talking about myself here).
4. She'll calm you down when you are freaking out about the way your TEAM chair pronounced the words "out of district."
5. She knows about programs YOU want to know about.
6. If she's worth her salt she'll mean the difference between optimal services/placement and insufficient ones.

Of course, you may be willing and able to do it on your own. I'm not. Our advocate is a keeper -- you can find her here.

Sunday, April 8, 2012

How I'm Whiling Away the Hours

Watching this clip that combines a favorite aria ("Saper Bramate" -- the mandolin serenade from Paisiello's "Il Barbiere di Siviglia") and still clips from an all-time favorite movie -- Kubrick's(via Thackeray) "Barry Lyndon."

I love this stuff! Barry Lyndon is a gorgeous musical and painterly excursion, as well as a great story. And Paisiello's barber of Seville, which predates Rossini by a hundred years or so, is lovely.

Listen, watch, and be amazed.

Trying to Figure Things Out

Have you ever spent a few hours simply trying to figure things out? Things like, what you are going to cook for dinner this week or when (if ever) and where your next vacation will be or how to get your kid more birthday invitations? Have you ever struggled to understand your teenager or your socially impaired child? An illness? A badly behaved pooch?

I spend a lot of time trying to figure out our lives. Like last night, lying sleepless in bed worrying about money. And after I was finished worrying about money, fretting about losing weight. And when I finished there, cogitating about the expensive place town we live in, and what would happen in terms of Benjy's school placement and Saskia's social life, if we were to live somewhere else. And then the horrid, horrid ear worm set in. (Dare I say it? the sound track to --aargh! -- Titanic, which I had the misfortune of hearing yesterday while sitting with Saskia, waiting for the Hunger Games to start.)

By the time I got to sleep last night it was, oh, 3 a.m. or so. And then I had bad dreams about -- well, never mind.

I still have not sorted things out. (Anyone have any thoughts on how to stretch $47 for a week? If so let me know.) But my optimism is irrepressible, which is why I keep going through the exercise of figuring things out. Someday it's going to work.

In the meantime, Benjy has a looong get-together with a friend today, and my bestie, Anke, is coming from Connecticut to hang with me. She, Saskia and I will have a girl's day out on Newbury Street while the rest of the world -- well, the Christians in the world -- eats ham and potatoes and whatever else you eat on Easter.

We're hoping Starbucks will be open. Not that I'll be drinking. Not on $47 that's got to last till Friday. But I'll be having a blast, and so will Benjy and Saskia, which you can do on $0.00 per day. I don't know what Lars will be up to, but if I had to guess I'd say jogging and then snoozing.

Happy Passover and Easter, peeps!

Wednesday, April 4, 2012

Weird Googling

People come this way via the weirdest Google searches. This week a person looking for "Asperger cross dressing pantyhose" dropped by. Oh, okay. Really? And a person -- plagiarizing high school student is my guess -- looking for "A small paragraph about nothing ventured nothing gained" landed here.

Two people -- TWO -- were hoping to find out more about these:

(Codpieces -- yes, slightly x-rated, except when I write about them)

Then there was the person who Googled "Dog lying on sofa." No wonder he or she landed here -- I have the original dog-on-sofa. He lives on the one with the most pillows.

Sometimes -- and this is cool -- all the folks who drop by on a given week come here by design: they've Googled some variation of The Striped Nickel. (Last week someone searched for "The Spotted Nickel." Fortunately they found me. Whew -- close call!)

I love that you, Readers, are coming here and coming back. Even my recent droughts haven't deterred you. In a little over five months I've had more than 8,000 hits on this site, including, of course, a few "vanity hits," and a large handful by grandma and grandpa. That is SO cool. I would tell Benjy about it but he might think he's famous. I wouldn't want to deal with a kid who's too important for his morning oatmeal.

I would tell Saskia but she'd just roll her eyes. And if she found out I was writing about her she'd KILL me. So I'll just have to enjoy the fact on my own. Or maybe I'll tell Lars. I'm still waiting for him to forgive me for naming him "Lars" -- not that his own Teutonic name is any less Euro. Just slightly more southerly.

Monday, April 2, 2012

I'm sorry, I couldn't turn off the cute

Check out THIS baby (it's a pygmy hippo):

I think I yoinked this pic from Yahoo News. If they yell at me I will have to take it down, so enjoy it while ye may.

Holy Hellacious Hound, Batman!

I thought we could all use a dose of cute tonight. Enjoy!

I Don't Know How She Does It

Did you ever read that book, I Don't Know How She Does It? It's a fun read, all about a working mom competing (in her mind) against the "mothers superior" (read: stay-at-home moms) and feeling like she'll never hold it together. Of course, she does, and with aplomb (and a large measure of stress and disarray).

Well, I felt rather like Kate Reddy, the heroine of that book, when I was working full time and parenting two children, one disabled -- although I'm not sure I did anything with aplomb. I kept us all fed and clothed (more or less -- not counting the holes), and kept Benjy alive. I guess that's saying something.

Now I am not working and I feel, if possible, even more like I can't hold it together. I didn't feel that way at first. But now that Saskia's illness, whatever it is, is waxing, now that we are seeing "ologists" every week, and she continues to feel exhausted and full of malaise, grow new lesions, lose hair, look ghastly white, AND SO ON, I am beginning to think I'm going to lose it.

I would give my left arm -- and I'm left-handed -- to be one of those prosperous, healthy families we seem to be surrounded by. I'd be willing to forgo prosperous. Just make us healthy, please.

So here I am, losing it. Actually, not so much. Instead of losing I am gaining. What consoles me is food, preferably of the carby variety. So I'm eating myself silly. Why oh why couldn't I be one of those gals who STOPS eating under stress? Just lucky, I guess.

Good thing I am too tired lazy to go shopping to replenish our stores; all I had in the house this morning was kale. So I will shortly be consuming some AWESOME homemade kale chips. (I really do mean awesome. Kale chips are yummy AND good for you.)

Next on today's agenda is a meeting with Saskia's teachers, to plead with them that they reduce Saskia's homework. she comes home from six hours of school to face four to six hours of homework on a regular basis. This must violate some child labor law, don't you think?

Anyway, that's my rant for today. I promise to return to the old upbeat programming as soon as possible. So stay tuned!