Woulda Coulda Shoulda

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…)

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…)

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…)

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…)

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.]

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…)