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Graceless: Sleep Deprived Thoughts on Raising a Chronically Ill Child

By Amy Roost


I have two sons. The youngest is Predicament; the eldest, Circumstance. It’s always been the case. Under the circumstance, I’m limited in what I can offer my employer. Under the circumstance I’m exhausted. Under the circumstance I’m penniless. Under the circumstance, I’m frustrated. Under the circumstance, I’m stuck. Some days I can’t move. I can’t breathe. I’m stuck, under the circumstance.

Circumstance is graceless. He crashes cars. He bumps into walls, breaks dishes. He chops his finger not the onion. He chews loudly. He walks loudly. Clears his throat constantly, loudly. He is graceless. And I’m his mother. I want to help. Really, I do. But I also want to scream. I’m so tired. It’s been a long time. Like holding-your-mouth-open-during-a-root-canal long time, trying to get out from under this circumstance. Trying to get unstuck.

Stop making noise. Stop breaking things. Stop being depressed. Stop siphoning money. Stop being sick. I hate that most of all. Stop it! For me. For you. Please stop being sick. I’ll get you a set of Legos, take you to Disneyland, buy you a new laptop if you’ll please just stop being sick.

Broken elbow from soccer. Broken wrist from skateboarding. Broken arm from walking the dog. Trips to the ER for anaphylaxis on Valentines Day, during a block party, after a plane ride, on the last day of high school, your sophomore year in college. Anaphylaxis, for God’s sake, while I’m visiting my dying mother in the hospital. That’s right, side-by-side gurneys. You can’t make this stuff up.

What’s that you say? You’re good now? Whew. Thank goodness. You won’t let it happen again, will you? Say it. “It won’t happen again.” Isn’t that right, doctor? Isn’t that right allergist, neurologist, pulmonologist, orthopedist, dermatologist, gastroenterologist, neurosurgeon, pain specialist, psychiatrist? No more being sick! We’re all done, right?

Hey, you! Yeah, you over there, Predicament. Who said you could break your leg mountain biking and get medevaced to a trauma center? That’s definitely NOT okay. Who gave you permission to break bones and have surgery? It wasn’t me, that’s for sure. Not while Circumstance is broken. Not now. Not ever. You are not allowed to break, Predicament. Got that? Good. Now go back to being predictable.

Your circumstance, Circumstance, is that you are a bowl breaker. My circumstance is that I am a bowl sweeper. A bowl fixer. All the while cracking. Slowly cracking.

What is it they call that in Japan? Where the bowls are glued back together, the cracks filled with gold? Broken and yet completely whole. Beautiful really.

Did I say you were graceless, Circumstance? You’re not graceless. You are grace. You are my favorite word in the English language. Grace. You are the middle name of my best friend. Grace. You too, Predicament. You are grace as well. You are both grace.

I’m the graceless one. I am graceless forever expecting. For never accepting. How graceless of me to expect perfection from either of you.

Hold tight guys, hold tight. Okay, here I am. I’m back. Just like in Owl Babies, I’m back. I’m right here. Your mother. The one who loves you just as you are. It’s all right now. We’re together. Separate, broken—each in our own way—and yet whole. Beautiful really.

Amy Roost’s writing has appeared in The Manifest-Station, and Huffington Post. Her first collection of personal essays, Hot, Wet, Mess: Tales of a Chaotic Yet Reassuring Life due to be published in Fall 2015.

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