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And so here we are

Left to my own devices, I don’t often find it hard to write. My head is always full of STUFF—some of it important, plenty not—and the STUFF gets tangled up with pesky FEELINGS and then there is something about the act of extracting those things from my skull and committing them to letters and punctuation and letting other people see it that helps me make sense of things. It helps me to make sense of ME.

That’s inherently selfish, and I know it. Then again, a lot of things are. I’m not convinced the way I’m compelled to write is any worse than anything else, but I know this about it. I do pay a lot of attention to how I involve others—my family, my friends, random people—when I write, and I am all-too-often aware that the human penchant for personalization means there is no avoiding pissing people off. That, too, is part of the territory. Most of the time I don’t mind; I am careful, and if you read something I didn’t actually write (or construct something I didn’t intend), that’s on you, not me.

During the last however many months of feeling like life would never, could never, be normal again, my normally crunchy exterior shattered and left me exposed to pretty much everything right when I most wished to be impervious to others. It would probably be a good time to shut up. (more…)

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The “Phew, not going bankrupt” story

I don’t really know how interesting this is going to be for 95% of you, but someone asked me to write about it and after some consideration, I decided I would for two reasons: 1) A long-time reader asked, and I like her, and I’m a giver like that and 2) maybe even if this doesn’t apply to you and never applies to you, it is somehow informative to have some idea of how this goes, even if only just as a bit of an eye-opener about how health care works in this country right now.

So if you’ve been reading along here for a while, you already know that my daughter is now in her fourth month of residential psychiatric care, and our private insurance—which, for the record, goes though One Of The Gigantic Insurance Giants—carries exactly zero benefit for the care she’s receiving. Zip. Nada. Not a single cent of it is being paid for by insurance. I could write an entire book about why this makes me want to set things on fire, especially because our insurance DOES cover “acute care hospitalization,” which means that they DID pay for the times when the kiddo was an immediate danger to herself and spent anywhere from a few days to a couple of weeks being “stabilized” at a facility that costs twice what the residential place costs. The difference is that THAT kind of hospitalization is “meant” to be short-term and THIS kind is “meant” to be longer-term and insurance companies would rather pay more for less time and OH GOD GIVE ME A LIGHTER.

In case you’re not getting my drift here, I think this is beyond stupid. Unfortunately, I don’t run the insurance companies. (more…)

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What goes up, must come down

It’s been just over a month since I finally dared to say it out loud, that we believed Chickadee was getting better, that our long nightmare of a year might—finally!—be headed somewhere more hopeful. Meds were changed, improvements took hold, and I felt like we could hope without holding our collective breath.

Since then, life here on the “outside” has marched on without my daughter. Monkey started school; Otto started back to work; when I drive past the high school in the late afternoon and see the cross country team out running, I quietly count to myself how many of the kids we know, and find myself predicting where in the long line of jostling teenagers my Chickie would be, if she was there with them as she’d originally planned.

When friends ask, I smile and tell them we’re hanging in there. But after the first couple of times, yeah, I changed up my schedule so that I no longer pass the high school when the kids are out. It hurts to look at them. The little stabs of tangled up longing-and-fear they inspire make it hard for me to breathe.

We are hanging in there. But it’s gonna be a long hang. (more…)

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I swear I am not making this up

It’s official; we have reached the portion of 2012 where things have been so incredibly suckalicious that my hands hover over the keyboard while I wrestle with the very real fear that you will just stop believing what I’m saying. Because it’s outlandish. How can one family have such incredibly bad luck? Surely I am just making some of this up, or embellishing, or I’ve just completely lost my marbles or I’m just screwing with you now.

(It would be nice if that was true, kind of. Except for the part where I’m either crazy or sadistic.)

Anyway. EVERYONE IS FINE. Let’s start with that. At last count everyone is still alive and has all their limbs, so not to worry! It didn’t kill us, it just made us wish it had made us stronger!

So. When last we spoke, my parents had arrived, and Monkey was on his second day of high but mysterious fever. I even noted that “he seems fine.” Cue the ominous music! (more…)

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The logistics of frustration

If Chickadee had cancer—if she had a tumor in her brain or rogue cells infiltrating her marrow—everything would be different. Well, almost everything. The thing that wouldn’t be different would be the fear and the worry and the what-if-ing I try to only indulge in in the middle of the night.

But people wouldn’t avoid us or say, “I don’t know what to say.” They would say, “I’m so sorry” and they wouldn’t act like we were contagious or whisper about our parenting.

Our health insurance would pay for her treatment, because that’s what health insurance is supposed to do. Even though brain surgery and marrow transplants are much more expensive than the treatment she needs, which they refuse to pay for, because health care in this country is undeniably broken.

And we could be there with her, all the time, and know what the heck was going on. (more…)

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In the never after

I kept thinking that once I knew for sure what was happening, it would be less overwhelming, and then I could say “Hey, here’s the story, I’ve finally unclenched long enough to tell you.” I could sit down and figure out what to tell, how to tell it, and then I could assure you that everything was going to be okay and not to worry.

That was a good idea, I guess. I mean, it would’ve been, if it had worked.

It doesn’t work because I don’t know if everything is going to be okay. A rather large portion of my brain is convinced that nothing is ever going to be okay ever again, but even if I manage to turn down the volume on my fears, the fact remains that I don’t know. We don’t know.

Once upon a time I believed that if I loved the stuffing out of my kids and worked only part time… or stopped working entirely… or worked from home… to better afford me the time and space to pack their lunches and do their laundry and tell them to put their stuff away and remind them that I love them beyond measure, the road might be a little bumpy, but it would be okay. I would be a good mother and they would be happy and healthy.

That was a good idea. (more…)

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“I can’t” is a luxury

She says “I can’t, I can’t,” and I keep telling her that she can.

And she hates me for it. (I don’t really blame her.)

I think “I can’t, I can’t,” but I don’t get to say it out loud. I get to talk to doctors, talk to the insurance, brightly assure her brother that she’s fine, just fine, they’re taking good care of her, we have to believe she’s getting better; let’s go do something fun together while I’m home; let’s see if Lemur or Mario can play!

I don’t get to “I can’t” because she needs me and because if I can’t, who can?

One foot in front of the other. Because I can until she can, herself. Even if we all know I’m just faking it.

[Chickadee is in the hospital again. I will be huddled up with the family until further notice.]

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And it goes on and on and on

While we were camping and tormenting small dogs with boogie boards, Chickadee was spending a week with her dad. One of the things I shouldn’t say out loud—but will, because I’ve learned by now that everyone in a similar situation feels it, and guilt about it is just stupid—is that it was a relief to be apart for a few days. Not because we don’t love her (we do), not because we weren’t worried about her (we were), but because she is, at this point, due to many factors out of her control, completely and totally exhausting.

A child with a chronic illness is a challenge to a parent’s patience and endurance, under the best of circumstances. A teenager with a chronic illness is a vicious beast determined to make The Unpleasantness a family affair. A newly-diagnosed Aspie who also happens to be a teenager with a chronic illness is a special circle of hell reserved for those of us who once, foolishly, prayed for patience.

I know I’m supposed to say that I will do whatever she needs because she is my child and I love her, and that’s 100% true. But that doesn’t mean I like it. (more…)

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More of the same

I lamented to Otto this morning that “I don’t have anything interesting to write about!” Otto—deeply embroiled in the home stretch of grading and finishing up the semester—gave me several suggestions of guffaw-worthy student gaffes, none of which I’m actually going to share. That’s mostly because they’re not my stories, but also because I don’t want Otto to lose his job. He’s so nice to the students’ faces; there’s no need for them to know he makes fun of them here at home.* Um. Oops?

See, the problem is that all I want right now is… nothing. No drama. No excitement. I want boring and predictable and utterly ordinary. I’m not sure we’ve quite gotten there, but we’re getting closer. And I like it, but it doesn’t make for fantastic storytelling, in general.

NEWSFLASH: With about half an acre of safely gated area in which to roam, my rotten dog only ever wants to go find (and apparently roll in) the one plant (which I cannot locate to save my life) which immediately spits tiny green burrs all over her fur. That’s what passes for excitement here right now, and I know, it’s pretty boring. (more…)

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Strawberries fix (almost) everything

Hey, let’s talk about the kid who still likes me!

So I may have mentioned that we suspected Monkey had another sinus infection. It was a kind of deja vu to last year’s pre-surgical carnival of Angry Monkey; his behavior has been steadily deteriorating for a month, and all the while he insists he feels FINE he is FINE it’s just that everyone else is STUPID and MEAN and why are you LOOKING AT HIM? Things at school have been rough, and I’ve been back in that place where I say, “He’s sick. This isn’t him. Please be patient, we’re working on it.” And whether it’s reality or not, it feels like even the wonderful Hippie School teachers are not quite believing me, and in the meantime, I’m slipping the kid Advil every morning and on the phone with the ENT’s office, begging them to find him an appointment, a cancellation, ANYTHING, please.

I’ve realized our pediatrician is fairly useless when it comes to Monkey’s ninja sinuses, so that’s why I was waiting for the ENT appointment. I gritted my teeth and waited and finally yesterday was his appointment. (more…)

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