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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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It’s a bird! It’s a plane! It’s Supernerd!

The last few days have kind of beaten me down, which you wouldn’t think would be possible, given that I keep (stupidly) thinking to myself, “Well, it’s not like things can get any WORSE.” HAHAHAHA. HA.

Chickadee just scored herself a sports medicine doc and some regular physical therapy, possibly because someone realized there was a doctor we hadn’t seen/needed yet. But I have to say I do like the concrete nature of this particular problem. (“You have iliotibial band syndrome and that is fixed via rest, ice, anti-inflammatories, and physical therapy.” It’s such a nice change from “We don’t really know what’s wrong with you exactly or if this will help.” Refreshing, really.)

And of course in the midst of this, she was gearing up for the final Reading Bowl competition today—State Championship, a.k.a. the end of the line in this particular event, or Bookworm Nirvana—and for some reason really not appreciating my jokes about how it was a good thing Reading Bowl doesn’t require a lot of running. (Whatever. I thought I was hilarious.) (more…)

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Poor, poor little bunnies

I was feeling pretty good yesterday, which was surely my first mistake. Sure, the pollen count is SO HIGH (how high is it?) that no one can breathe, but whatever. Details.

Yesterday evening Chickadee commenced falling into giant chunks of woe and sickness, and the FANFUCKINGTABULOUS thing about the combination of 1) chronic illness and 2) TEH DRAMAAAAHZ is that it can be very difficult to suss out what is a real crisis and what is merely a teenage crisis. It took the threat of a trip to the ER and about an hour on the phone with various doctors to determine a course of action and decide she was okay for some watching and waiting, and eventually she was better and Otto and I were left to do some late-night adrenaline management (“I’m just going to CLEAN ALL THE THINGS before bed!”) once she was finally asleep.

We went to bed at about 12:30. At 2:00, one of our smoke detectors started beeping. Not a fire, thankfully, but even low batteries kind of suck when you’ve only been asleep for an hour. At 3:15, Monkey—the polar opposite of Chickie when it comes to illness—materialized at the side of the bed to say that he couldn’t sleep. He was directed to go back upstairs and lie down, and after a minute my mama-senses started to tingle and I went up to investigate further. Yep, burning up with fever. But “no, I feel fine, I just can’t sleep.”

Is it 2013 yet?

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Well, here you go

In the continuing saga of My Oh My What Exactly IS Wrong With This Chickadee Kid, Anyway… a while back one of her doctors sent us to another doctor who sent us to a third doctor. And she told two friends, and they told two friends, and so on, and so on, and… oh, wait. That’s a shampoo commercial, not what happened to us with the doctor. My mistake. (But your hair really DOES smell terrific.)

Anyway, we met with this new doctor—we’ll call him Dr. Zebra, for reasons which will make no sense to anyone but me and Chickie, who leaned over to me the moment we left his office that first time and said, “IF YOU BLOG ABOUT HIM YOU MUST CALL HIM DR. ZEBRA”—about a month ago and sat in his office and Talked About The Situation while he took copious notes. I find that all good doctors start out with taking a lot of notes which you never end up getting to see, and I strongly suspect them to be a combination of “Kilroy was here” doodles and phrases like “Holy crap this kid is a medical mess but darned if I have any idea why.” He asked both of us a lot of questions about everything that had happened so far, and her symptoms, and her medications, and then he started asking all of the standard “history” questions, like if her birth was normal and such.

“And what do you do, Mom?” he finally asked, pen poised over his clipboard, while I briefly fantasized about answering “I’m a hooker,” just to see if it would break his easy composure. (more…)

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