“Her X-ray from yesterday is a lot worse than her previous one. I’m concerned about the possibility of permanent damage to her lung if we don’t deal with this aggressively. I’d like her to be connected to the ventilator 23 hours a day for the next two weeks.”

He bent over to examine her with his stethoscope, wished us good evening, and left, leaving me feeling chastened and frightened.

“Why’d he have to scare me like that?” I griped to my husband later that evening.

“Er, maybe because he thought you wouldn’t listen to his instructions otherwise?” my husband offered.

I couldn’t deny the wisdom in his words.

There was only one problem. Long before, I’d decided I couldn’t deal with Aviva having a trach. When she got one anyway, I decided I couldn’t deal with her needing ventilation. When the powers that be decided that nighttime ventilation would be good for her, I dug my heels in and clung to the last piece of ammunition in my arsenal. I wasn’t going to learn to use that respirator. That would be my husband’s job, and his only.

That resolution worked for a while, except that now it wouldn’t. I couldn’t ask even my very dedicated husband to stick around 23 hours a day.

And that’s how the next morning found me getting ready for another hospital appointment, loading up a taxi with Aviva and her regular collection of accessories like suction and oxygen and monitor, only this time, a respirator too.

“This is insane,” I hissed to my husband through gritted teeth. “I don’t even know how to use this machine.” He nodded sympathetically and helped me stuff everything into the car.

We were off, and sure enough, soon the machine started to beep ominously. Circuit disconnected read the blinking red letters on the screen. Okay, this much I knew. I reached out to reconnect the tube to the trach, but it was connected. This called for tech support. I called my husband anxiously. “The screen says circuit disconnected, but it’s connected!” I said frantically.

“Maybe double-check,” he said.

But all my double- and triple-checking only yielded a tube firmly connected to the trach, and a machine that would not stop beeping.

We got out of the cab, (lucky driver, blessed silence) and I suddenly saw the two plastic wires that had fallen out of the machine. A clue! I got tech support on the line again. “Okay, I see two clear tubes fell out of the machine, but I don’t know which one goes where,” I wailed.

“The one with the sticker goes on bottom, and the other one goes on top,” my husband patiently explained.

I reconnected the tubes and the beeping stopped. Maybe this respirator business wasn’t so complicated after all.

We made our way to the various health-care professionals we had to see (didn’t know we had to bring passports with us, “But she’s ventilated, do you realize how hard it was to come here?!” begged out of the nurse’s examination on the seventh floor, “Do you see how much stuff we have to carry around?”) and got ready to leave.

I couldn’t leave Shaare Zedek without stopping by Angel’s for an iced coffee, the hospital’s most exciting upgrade in a long time. I got on line, and waited while the man behind the counter served the woman in front of me. He handed her a coffee, and motioned to me to wait another minute while he launched into a discussion with her about discounts for hospital personnel. Then he looked down for a minute, and suddenly noticed my little girl in her car seat on a respirator.

“Selichah, selichah,” he said, looking somewhat confounded.

“It’s okay,” I said, handing him my coins. “Can I have an iced coffee?”

He came back with my coffee and my money.

“Matanah, it’s a gift,” he said.

I tried to give him the money, but he insisted. Hey, this respirator thing has perks. Free iced coffee!

We got into another taxi and I brought her to her day care. We bumped into the director in the hallway, who raised an eyebrow questioningly.

“Oh, this,” I said. “We brought her respirator today. It’s really nothing. Easy as 1-2-3.”

If she has issues, I can always tell her to call tech support.

I got home, finally, and collapsed on the couch. The line in the sand I’d drawn, I do this much but not more, had moved again. And I had moved with it.

It was time to curl up with a book, find good chocolate, and send up a tefillah for strength for the next time He might decide to move that line again.

(Originally featured in Family First, Issue 724)