Tuesday, June 3, 2014

A Day in the Life

"Will you feed Will?" she asks me.

"Of course," I say. "I was planning on it."

"Do you think we could crack the window open? I want to hear the rain."

"Sure," I smile. "I'll close it when I come to bed." I open the window and adjust the blinds so the air can flow.

"I can hear the crickets."

"Actually, they're probably peepers."


"Spring peepers. Frogs."


My pedantic side is showing; who cares if they're crickets or frogs? I roll my eyes at myself in the dark.

I'm home a little early from my Coke job. My schedule is 2:30-11 but some nights are slower. I worry that I won't have enough hours to pay child support, but I also get paid mileage for going from store to store and that should compensate. Plus last week I worked a warehouse shift, which pays a lot more and I worked five hours of overtime.

It's time for Will's last feeding. Will is ten years old and has lissencephaly, a disorder in which the surface of the brain is smooth, lacking the ridges and crevices (technically gyri and sulci) which ordinarily characterize the brain's topology.

The result is, among other things, cognitive impairment and chronic seizures, requiring a cocktail of drugs which would kill most of us just to keep things somewhat regulated. The prescriptions all say x amount x times a day "for seizure control" but I'm learning quickly that "seizure control" is wishful thinking at best. It seems more like a dark joke that's not very funny.

Actually there's a cognate of gallows humor that's part of the discourse of special needs families. "Willy's talking back again," I'll say to Dawn, who'll reply something like, "Probably we're not spanking him enough." Or the time I told Dawn that I had to take his driving privileges away because he was burning out the clutch.

[Don't judge me; I just had that clutch replaced.]

I'm new to this. Not just to the procedures and routines, but to the life-world of having a special needs child. I'm sure it's cute to the veterans: the noob's first blog post. Isn't he adorable? I've tried to jump in with both feet; Dawn sometimes seems amazed that I want to jump in at all.

There's a lot of philosphizing and theologizing in these circles. A lot of theodicy. This makes sense; we're face-to-face with some of the most challenging aspects of life. We're tempted to wonder why, and to speculate, but I think we also intuitively know there's no answer. To me it's just life. Nothing more, nothing less.

In my case, I'm choosing this life, but I don't actually see it any differently than if Will were born to me. Ignoring for the moment the extent to which it feels like this life chose me –  a sentiment that is phenomenologically viable but metaphysically suspect  there was no cost/benefit analysis with Will on the minus side when I decided to start a new life with Dawn.

In fact, pardon the salty language but that's a shitty way to look at it anyway. Will was and is simply part of the constellation of things that make up this life, and I feel I belong here. So yes, I'm up at 10 o'clock feeding a child with a terminal brain disorder, and that's not tragic or admirable or even all that remarkable. It's just life. "Was that life?" Nietzsche asks at the end of Thus Spake Zarathustra  "Then once more!"

Will can't properly chew or swallow, so he gets fed through a gastric tube, or g-tube. There's quite a bit of terminology to learn here; Dawn was proud of me recently for using the phrase "rescue meds" in a Facebook post. I'm still trying to sort out the taxonomy of seizures. Anyway, his pills get crushed and suspended in liquid and delivered through the tube via a large syringe.

In another attempt at "seizure control," Will's on a ketogenic diet –  think Atkins –  and can't have the liquid drugs because most of them have sugar in them. This means crushing the pills in a mortar and pestle, pouring the powder into the syringe, putting the plunger in the syringe without the powder shooting out the other end (a rookie mistake, and yes, one that I've made), and then pulling water into the syringe to create the suspension.

This is then injected into the g-tube and followed by three more syringes full of water. This happens three times a day, each instance followed by two feedings an hour apart. In the morning, for instance, he gets his meds at 6, then feedings at 7 and 8. At night it varies, and on this particular night he needs one more feeding before we're done for the day.

His food, such as it is, is some sort of keto-friendly protein shake. Sometimes we just call it formula. It's supposed to be vanilla, but it ends up smelling like cake batter with a hint of Parmesan cheese. Like cake batter made with sourdough starter or something. Sickly sweet, with a hint of sour, and not in a good way.

I turn on Will's light and he's awake and alarmingly alert. I say "alarmingly" because a) he's supposed to be sleeping and has had some trouble with the whole day/night thing lately and b) because when he's alert (which is, on the whole, a good thing), feeding him becomes a matter of dodging fidgety limbs that seem precisely calibrated to knock your hand and splash his food everywhere.

It's like he waits for it. To feed him, we attach a plungerless syringe to the line and use it as a funnel for the food. He doesn't have much motor control, but his hands instinctively grasp, and he could conceivably grab the line and yank out his g-tube, which introduces a host of problems.

More likely, however, you'll have his arms contained with one of your arms, feeling clever with your other hand holding the syringe out of reach, and a knee will come out of nowhere in some kind of ninja move and douse you with formula.

Did I mention the sickly-sweet/sour smell?

I mean, theoretically, of course. It's not like this has actually happened to me or anything.


Tonight I'm onto him. I watch the arms and the legs and the feeding goes on without a hitch. I change his diaper, and give him a pad and a second diaper because he likes to gunnysack on us, saving it all up for a massive flood in the morning. We do a lot of laundry.

I situate him on his side, with his stuffed bear and a pillow between his knees and a blanket. "It's sleepy time," I say, hoping he'll take the hint and get some sleep. In the morning we'll start again with pills and the morning feedings, along with getting him ready for school. I'll have some papers to grade, and around 1:30 I'll get my route from Coke.

I check Facebook, and think about a snack but it's late and I'm not hungry. I brush my teeth, close the bedroom window and blinds, and get in bed.

"Did Willy get a blanket?"

"Of course," I say, and kiss her forehead. I'm not even sure she's really awake.

In about five minutes, I'm not either.