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.
I want to be one of those moms who smiles and strokes her forehead and tells her everything is going to be okay and shhhh, baby, just rest. I want to be the kind of mom who makes it all better.
Maybe I would be that kind of mom, for a different kind of kid? I don’t really know, because I don’t have a different kind of kid. I have a kid who makes her own rules; I have a kid who is so desperately angry about being sick that she does Very Stupid Things and then doesn’t understand why it makes her worse. It turns out that if you don’t report major pain because you’re afraid of going back to the hospital, or if you exaggerate about minor pain to get out of doing chores, or if you lie about taking your medication, those things can be A Problem. I mean, WHO KNEW? And also when you get caught, shrieking I HATE YOU SO MUCH I WOULD RATHER DIE THAN LIVE HERE doesn’t actually help. Nor is it conducive to Lifetime Movie-esque forehead stroking and maternal calm.
I don’t want to say that I have no idea how to do this, that over the last six months I have come to a place where I don’t know my own child. I have resisted detailing the ways in which she either clings to me—unwilling to let me out of her sight or even her grip—and then turns on a dime and demands to go live with her father because life here is so unbearable.
I have tried not to complain about the strain it has put on our household, my marriage, her brother’s well-being; and the fear that has taken up residence in my chest is always there, because it has become more and more clear that she is willing to fight ME, but not the illness. And I can’t tell her that if she’s not willing to fight it, it will win. She knows, anyway. She’s too angry to admit she’s giving in, and too scared to commit to defeating it. It’s easier to defeat me. It’s easier to defeat herself.
I have tried not to complain about the career I love, laying in tattered bits in her wake. Tried not to complain about the financial strain. Tried not to complain about my new full-time job of doctors’ appointments and medications and trying to comfort a child who meets every kindness with venom, because if she pushes everyone away there will be no one left to tell her to stop giving in.
She was back yesterday after lunch, and refusing to speak to me only 15 minutes later. She walked away from me at the grocery store and disappeared. I finished my shopping and took the bags out to the car and wondered what I would do if she didn’t appear, but thankfully when I returned the cart she materialized by the car, plunked herself in the back seat to demonstrate her disdain for me, and I didn’t have to complete that thought.
Two hours later she was apologetic and clingy. A few more hours after that, we were on our way to the Emergency Room.
It was a long night but a relatively easy one, given all the rest—a quick diagnosis of “atypical migraine” and we were eventually sent home with a referral to Yet Another Doctor, and she curled up in the car next to me and whispered apologies, cried about how I do so much for her and she’s so mean and plus she never gets better, and my heart broke all over again. My baby, my beautiful baby, needing her mama to know what to do. And her mama is such an idiot.
Last night I smoothed back her hair and whispered that it would be okay, and she let me, and for a few minutes, it almost was.
It’s all the other minutes that are killing us both.