Yes, you can swallow upside down

...and other ways to say, "life goes on."

That should be the title today.

When I took these photos, I imagined some creative, helium-filled happy words about the joys and simplicity of homeschooling. It was the day we learned about the digestive system and I taught the girls about peristalsis. But life intervened, and I never wrote helium-filled happiness, all through a week without seizures and preparing for a long-awaited visit from old friends, and finishing work to meet deadlines, and doing the fall and spring cleaning I missed last fall, last spring.

We kept swallowing, through all those good days of hard work and elbow grease. Nothing seemed too terribly upside down. And tonight it doesn't, either - seem upside down, I mean. It's just a normal night. I can't sleep because the day was stressful and how else to process, other than to read or to write? Amelia had four seizures today. The day was full of poop, puke, pee, laundry, floor scrubbing, and long phone calls to doctors, labs and nurses. It felt oddly and uncomfortably like a 16 hour shift as a nurse. I jumped through all the same hoops I did then...without the resources, without the safe emotional distance. Tomorrow I am supposed to leave her with some college students I don't know well, travel 30 minutes to a rural town with no cell phone service...and be okay with that. Take a day off.

Somehow I don't picture that happening. Tonight, between artisanal local cheeses and my mother's fabulous peppery grissini and sips of Aaron's farmhouse wine, we talked too about death and loss and grief and dealing with disability, seizures.

What else do I say? How do I put this feeling into words? I can't really. Inside my skin somewhere is the very visceral memory of the 117 patients I sat with as they died. Babies, toddlers, children, teens, ushered to the very doorstep of heaven by parents who rent their souls in anguish that it is really, in the end, true...this distance between here and there, now us and them. "A close and unbreachable distance: witnessing everything and nothing." 117. I wrote every name in the black book and can recite almost all by rote, memories flooding in to fill the vacuum each name creates as I speak it, even silently. The texture and color of hair on pillows, the small voices, mannerisms and favorite things, all tied together with the ebbing away of that person into just the husk I rolled down to the basement in the dark of the night shift, every third florescent light lit, just enough to give the halls a spooky green glow and not enough to wash away fear.

Mine was a different anguish. Having just enough knowledge and tools at my disposal to sometimes help - the tug of putting technical skill to work while experiencing something so deep emotionally - trying to reconcile faith, in that moment, with something that seems so disastrous and so final. In the end, I chose to reconcile it. I face now my own child's illness. And I walked today at Relay for Life as a cancer survivor-slash-patient, with my four kids, and felt the energy in my limbs and the full turgor of my skin. Contrast it with the weak and dying I see around me in the survivor lap. To be in this place of vigor and youth, to see my daughter there too, yet to be brought back to memories so dark and final...

I've thought of writing up the 117 in a book. I even have a title, and a few chapters. The title usually comes last for me as I write, so when it comes first I assume the project is a failure from the get-go. Who reads depressing books like that - other than other depressed people? And I have nothing to offer them as comfort. All I harbor is a sweet potpourri of dried flower memories, of men and women, girls and boys who are long gone. I can't add much to their stories, as I didn't then either. I was just the watcher from the corner. The vital sign checker. Just outside the sphere of acceptable emotion. I squeezed my own tears in then - bottled them up for later (heaven, perhaps?).

Tonight, I ramble. Find comfort in another, similar experience, phrased more elegantly.

Breathe. Swallow. Repeat.

I wish for the night, I walk through the dark rooms and wish for the sleep that erases all. I hear the late night cricket song and wonder if he is singing a lament for the day past or the day still to dawn.