Darth Vader takes deep breaths

imagesJust breathe. Please. A little breath. I’m not asking for much. A tiny one. Little boys should not be blue. They should be pink or pale white. But not a light blue. The nebulizer is blaring. Smoky medicine is pouring into his lungs and out into the room. I am thinking hard at Avery. He could never hear me over the din the nebulizer makes. But I think he must hear my loud desperate thoughts I’m trying so hard to make clear.

Things are Code Red for a while until God is merciful or science is good and the lungs accept the medicine and all is well again. Rinse lather repeat. The cycle continues with Avery in seasonal fits and starts. He’s the picture of health. He’s the boy who can’t breathe.

The nebulizer has a long weird tube the smoke pours out of, and he wears a mask that encompasses his face. He doesn’t like the mask. Who would? Darth Vader probably didn’t want to wear his breathing mask at first. He fights it. Are you trying to die? I ask him inside my head. We wrestle a bit. Try to distract him by playing his favorite video Toy Story at levels of sound normally reserved for Led Zeppelin concerts so that it can be heard over the nebulizer. The nebulizer is only as loud as the Concorde jet on takeoff. So, it’s a close thing to be able to hear Buzz explain his flight dynamics to a puzzled Woody.

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He holds Woody in his hand. Woody has seen his better days. The head has come off little Woody several times. We’ve tried screwing it back on. Gluing it back on. Taping it. Praying it on. Everything. There’s nothing in this world quite so disturbing as Headless Woody. The Headless Horseman is nowhere near as terrifying for us as Headless Woody. We scramble around in the seat cushions like mad when we notice Headless Woody is happening again hoping like mad our dog Abby has not swallowed the head for good this time.

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The fact that Avery is autistic and asthmatic seems hardly fair. Could he be one or the other, please? This tests us to the excess. One night we had to keep Avery up all night long for neurological testing in a doctor’s office in Asheville in relation to the autism. The nurse explained he could not sleep a wink the night before the test. We took turns. We grew loopy. Tag. You’re it. Keep him up. Entertain him. Dance with him. Sing to him. Play with him. Tag. You’re it again. Robyn swears she was just it. I swear I’ve been it for three hours and my head hurts. Her head hurts too, she says. Yes, everything is starting to hurt for everyone.

We make it through the sleepless night. Avery is trying to sleep on the ride over to the doctor’s office. We are snapping our fingers in front of his face. We get there at last. “We did it,” we tell the doctor. “He was kept up all night.” Avery is giddy from lack of sleep and woozy like a drunk. “What? Why would you keep him up all night? Did the nurse tell you that? Oh. No. That wasn’t necessary.” We look at each other. “No worries,” we say,  too tired for outrage. The doctor runs the tests. It’s all good. Now it’s time for us both to go to work while Avery gets to sleep all day in child care. Each story I write should come with a huge asterisk in the newspaper. An explanation to all readers should be given that I was compelled to keep a baby up all night for no good reason.

Avery seems to grow up and out of the asthma. The episodes take years off my life. But they diminish over time. He has a little handheld device that he can take a snort of medicinal air from in an emergency, but he hardly ever needs it.

Machines that breathe for us are weird things. My father is diagnosed with sleep apnea after going for the sleep test. He is given a machine to keep him breathing in the middle of the night. My mom is diagnosed shortly after that. Two machines breathing in the night, communicating their noisy messages across the different sides of the beds like katydids calling out to each other. My sister is diagnosed with sleep apnea after she goes for the sleep study. And I fear one day, I’ll be sleeping under the strange drone of another machine made to keep you breathing through the night. So far, it seems safest to stay away from sleep tests because we all are wired to genetically flunk them and be given sleep machines like Pez candy dispensed without thought to small children.

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Distilled water is needed to keep these sleep machines in business. Whenever my parents or my sister are coming to visit, they start bugging me about the distilled water a few weeks in advance. Did I buy it yet? Where is it kept? Do I know where they can get some if I have forgotten to buy it yet? I always haven’t bought it yet and have no idea where to get it. But we always find it pretty easily in some place or another. Crisis averted. Defcon 5 Threat Level deactivated. Distilled water crisis over. Return all tray tables to an upright position and sit back and enjoy the rest of your flight.

I want to see them all in this new place. My sister and my mom come to visit us recently in New York City, and we go through the whole distilled water search. My dad couldn’t come. He has shingles. If he had come, we would have needed to plumb the entire city for enough distilled water to satisfy three people’s needs and the small apartment would have sounded like a Death Star full of Darth Vaders breathing in the night.

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Luuuuke, this giant Death Star is saying telepathically. Luke…We….Are…Your…Family.

That is a nightmare I hope I never have.

Darth Vader takes deep breaths

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