He Ain't Heavy

The Friday before Halloween, Dawn sent Willy to school in his Marvel pajamas and a sign that said "I'm Super Willy, the Superhero." That's as good as it got. Neil Patrick Harris's family we ain't. Still, it had a certain Willy style and sass. It worked.

When a child dies, we often grieve not just for the loss of life itself but for the loss of potential, for all the things that child won't be or experience -- the prom, a wedding, their own children. Dawn remarked to me the other day that with Willy we're also grieving for everything he couldn't do or be in the first place. 

For all that we tried to give him, we couldn't give him the chance to make the winning goal in soccer, or get an A on his science project, or experience his first crush (though he was a bit of a flirt). His needs were such that we called it a win if we could just keep him fed, diapered, and properly medicated.

We did try to give him a personality. Since we had no way of knowing what or how much was going on inside that smooth brain of his, we ascribed things to him. We blamed him for things he couldn't possibly do, like eat all the Oreos or leave the toilet seat up. It was slightly less probable than blaming those things on the dog, but funnier.

We accused him of timing seizures to get out of doing things or just to make more work for us. "Anything for attention" I'd say, pretending to be exasperated. We accused him of being petulant in age-appropriate ways: "Tweens, amiright?" Another of my favorite jokes (and timing was key here) was "I know, right? It's like there's something wrong with his brain or something." 

We accused him of being grumpy with people he didn't like and of having an eye for the ladies. I used to seat him at the table to grade papers or play games. We narrated his life in the way that we wished he might be actually experiencing it, even though we knew that was probably not the case.

In light of this, it seems all the more appropriate that many of us imagine him, in whatever version of the beyond we're able to conjure, running and jumping and playing Nintendo because those were things he couldn't do in life. It's standard fare at funerals, and the images offer solace and comfort.

I don't want to make light of that. Those things are true in the best sense, in the way that they need to be true. If you thought or said or believe those things, thank you. It's touching and beautiful. I mean that.

But -- and I tread lightly here -- it doesn't quite work for me, and not because I have a less robustly kinesthetic view of what happens when we die. To me, that running and jumping and Nintendo-playing kid isn't Willy. I don't say that to be churlish or contrary or pedantic. It's a beautiful thought, but it's not the Willy I know.

Maybe it's because I came late to the party and never had cause to lament what his life might have been. I get that. I don't want to take anything away from someone else and how they need to process.

Nobody is glad that Willy had lissencephaly. It was not a gift. Neither Dawn nor I cop to a deity doling out special needs kids to parents who apparently don't have enough shit to deal with.

We never wanted Willy to be defined by his diagnosis. But he did have lissencephaly, and it was part of who he was for us. He was one of the "Liss Kids," an elite cadre.

The Willy I knew couldn't walk on his own, or even crawl or scooch down the hallway, so he had to be carried. Of course his parents scooped him up and carried him thousands of times before I ever had the chance, but that's what I remember: carrying him.

Willy had the reach that he had precisely because he had lissencephaly. Dawn and Todd made the connections they did because they were thrown violently into that world. A large chunk of the hundreds of people that paid their last respects to Willy we only new because of his disorder. 

Willy's superpower wasn't something he had in spite of his lissencephaly; it was his lissencephaly. That doesn't make it good or right or something for which we should be grateful. But it made him who he was and it made us who we are.

He needed us. Completely. He showed us, collectively, what we were capable of in the face of such abject need.

And he showed us it was okay to need. That's a superpower.

Workin' for a Livin'

It's just before 2am on a summer night and we shamble toward the entrance like a zombie horde. We mumble greetings to each other as we wait for the manager on duty to unlock the door and let us in. I've been unloading trucks at a major retailer, adding to what I like to call my "summer employment portfolio."

It's a world in which we're keenly aware of time. We're keenly aware of the fact that it's two in the morning, and most of us can tell you exactly how much sleep we got last night, a subject that lurks in much of our small talk.

We're also keenly aware of how many hours we've worked that week, because overtime is against company policy, even for crew leaders. This gets tricky on Saturday, which happens to be not only the end of the pay period but one of our busiest days.

It means that many of the strongest workers, who naturally end up working more hours, can't stay for the whole shift on Saturday because they're up against the 40-hour limit. Others "save hours" so they can help out. Either way, the attention to time is pervasive.

And we're aware of the time on each shift. We're usually scheduled for six hours, and if we're going to work more than that we have to take a half-hour unpaid lunch (another strictly followed policy), which leads to a kind of shorthand: "Can you take a lunch today?" means you're being asked to stay over, whereas "Let's break for lunch" over the PA means they expect the whole crew to stay over.

But you don't have to take a lunch, and if you don't, they can't make you stay. Otherwise, the manager on duty is in violation of policy -- which means, in the logic of corporate America, that you're the one in trouble. I'm not positive, but I suspect that you can't be forced to work past your scheduled time according to union regulations anyway.

The third possibility, "Let's go to break," indicates the whole crew is going on a fifteen-minute paid break, which means they're expecting the truck to be put away before the six hours are up and no one will have to take a lunch. Here, too, I think the union says you don't have to go home early, but nearly everyone does. There's an ebb and flow to how long the shifts run, and most people just roll with it.

It's not all like this. My other job, as a soft drink merchandiser, is a lot more fun. I actually like it. I'm relatively autonomous; I clock in and out on a phone they provide, and each night I have a route of four or five stores where I'll stock the shelves with whatever we've got in backstock. I also build displays and process orders.

No, I didn't build this, but it's awesome.

Being in and out of the same stores, I've gotten to know some of the managers and employees, as well as the other merchandisers. It's like a secret underground society of grunts on the front lines of American consumerism.

Even among vendors of competing products there's an easy camaraderie. We talk a little smack, but at this level there's far more commiseration than competition.

There's something I like about this world. It keeps me in shape, for one thing, but it's also pleasantly concrete: I'm not mindlessly pushing widgets through a chute, but I'm not trapped inside my head, either.

That's the Good Job. At the Bad Job, once the 2am shifts get going, I stop taking lunches so that I don't get held past the six hours. Sleep is too precious. The Good Job goes until nine or ten at night, sometimes later. I get home, grab a bite to eat, visit with Dawn for a bit, then take a nap.

At 1:15 I get up, go to the Bad Job, put in my six hours, take a nap, and get ready to head to the Good Job. Lather, rinse, repeat. I'm sleeping six or even seven hours in a given 24-hour period, but never all at once. I'm keenly aware of the time.

I don't make it more than a couple of weeks at this pace. I can't take the lack of sleep. It's like all I think about is when I'll sleep next and how much I might get. I'm not doing either job as well as I want to. I swear I can feel cognition slipping away. One day I call in sick and never go back.

There is no shame in falling before a greater enemy.

I needed to quit anyway, because it was time to start course prep. Compared to the horror stories we hear about adjunct faculty (the preferred nomenclature is "fixed-term"), I'm doing pretty well: I'm full time. I have benefits. I have a two-year contract. I get to teach some interesting classes. I've never felt treated like a second-class citizen.

There are some distinct advantages, too. I don't have to attend faculty meetings. Granted, this is because I don't get a vote, but let's accentuate the positive. I don't have to advise students or sit on committees. Any publishing I might do looks good, especially since I teach writing, but it doesn't need to meet the criteria for tenure.

I say all of that to put these next observations in perspective, and to make it as clear as I can: I'm not disgruntled. I like the university where I teach and I love the colleagues and students I get to work with. I feel, in general, pretty lucky.

But my base salary is still less than what I made 15 years ago as a music minister with a bachelor's degree. Anything I publish might look good, but with a 4/4 load (four classes each semester), I don't have time to write anything. I still haven't submitted a proposal for turning my dissertation into a book (there's a publisher mildly interested) and I owe a colleague a book review for a journal he edits. I'm spending time I should be grading papers revising this blog post (which I can't really put on my CV).

Again -- I want to make this very, very, clear -- I'm one of the lucky ones. I'm not on government assistance, partially because I teach extra courses (here and elsewhere) and I get summer jobs. I feel so good about being able to get them, in fact, about being able to make ends meet, that I forget to be scandalized by the fact that I need them in the first place.

It might just be some kind of neoliberal Stockholm Syndrome, but I like to work. I like, well, being useful. I like doing things. I like the feeling of having done a good job. In some ways, I feel like it speaks to my work ethic. I'm freakishly cheerful about work, and I'm reliable. I get things done.

I'm the quintessential cog in the machine, working to support a lifestyle of consumer distractions from work. My hard work is rewarded with goods and services that I pay for by working, things that someone provides me as part of their work, for which they reward themselves with goods and services paid for with the money they get from working.

The work I do in retail involves making sure people have access to the products they use to console themselves for (or distract themselves from) the daily grind of productivity, and the work I do as an educator involves helping students get the degree they need to join that daily grind.

Part of me feels like I should be affronted or outraged, but I'm not. Neither do I feel things are as they should be and that I deserve what I've got (good or bad). It just is. I applaud efforts at reform but I'm not holding my breath for a glorious revolution.

Truth is, I'm happy. I do my work and enjoy my downtime. My wife and I are consumers, like everyone else, but we're not big accumulators. We're not interested in surrounding ourselves with things -- apartment living makes this impractical anyway -- so much as we want to collect experiences, like trying a new pub or tubing down the river or just curling up to watch Netflix.

Maybe that's just respite from a world gone slightly mad but it's our respite, and being together makes it worth it. What should the world be like? At this point, I've given up trying to answer that question. I'm not that smart. All I know is that I've got a workday ahead of me, which I'll enjoy for the most part, but not nearly as much as coming home at the end of it.

Mean Time Before Failure

I went to my first demolition derby when my oldest daughter was queen of the county fair. She had to attend certain events, which meant I got in for free. The demolition derby is like the deep-fried Twinkie of live entertainment: I can't say it's good, but that doesn't mean it's not enjoyable.

Two things struck me. One was the sheer noise, from the PA announcer to the sound of crunching metal to the roar of the cars themselves, most of which just had straight pipes poked through the hood into the exhaust manifold. Mufflers are for sissies.

The other thing that struck me was how much some of these cars could take before they stopped running. They were getting smashed into by other drivers deliberately trying to take them out, and yet for all the damage they often managed to remain functional longer than I expected. 

Teams of backyard mechanics patched the cars back together between heats. You could see the sparks from the cutting and welding torches they used in their automotive meatball surgery. Parts were replaced -- or bypassed -- to get the cars ready for the next onslaught. One of the winning cars could only go in reverse by the time the tournament was over, but it won regardless.

Most of us experience our cars as more fragile than that. The difference between "functional" and "street legal" is salient here, as is the fact that most of us don't have crews patching us back together after every trip. We're not smashing our cars into each other on purpose, for the most part, but our damage threshold is (practically speaking) much lower.

As a power-commuter (I make a four-hour round trip twice a week for my main teaching gig), I am constantly aware of the things that might go wrong and render me unable to get to work or back -- or worse, stranded somewhere in between. In the past year I've been pretty lucky, but that's after replacing one car and spending $5,000 fixing another.

The simple fact is that things break. Hard drives and other products are given something called an MTBF rating, which stands for Mean Time Before Failure (or Mean Time Between Failures, depending on the kind of system). Failure is a given; the only variable is how long before it happens.

This is true of everything. Relationships die. Families disintegrate. Civilizations crumble. Climates destabilize. Stars go supernova. I used to joke with my more theologically-minded friends that my eschatology -- my vision of the end times -- is "everybody dies." 

The body-as-machine metaphor is problematic for a number of reasons, but the body is nevertheless a complex system that will eventually experience the catastrophic failure we call death. "On a long enough timeline," says the narrator of Fight Club, "the survival rate for everyone drops to zero." 

I think about this sometimes when I'm feeding Willy or giving him his pills. He's got a brain disorder; there is something profoundly wrong with one of the most vital of bodily organs. This has led to the failure or at least the compromise of other systems -- and yet he is still very much alive. Dawn was told he might not make it past two years old, and we just celebrated his eleventh birthday. 

Willy's situation is, at least statistically, more fragile than most of the rest of ours. The next seizure could be the one from which he doesn't recover. The next feeding could be the one that his body stops assimilating in the slow spiral of degeneration. The next virus that gets passed around could be the one that ends in a lethal bout of pneumonia, to which he is susceptible. 

But it's a difference of degree rather than kind. We're all fragile in this sense. I could die tomorrow of an accident or an aneurysm, and Willy would outlive me. Or I could have any number of things go wrong and live on in defiance of the odds, as Willy has. Bodies are weird and unpredictable.

St. Benedict adjured his monks to meditate upon their own death. That sounds morbid, but it's probably good perspective. Everybody dies. Of course we have preferences about the timing, but beyond the statistical advantages of staying healthy and minimizing risks, we don't really get much say. 

In my own nod to the Buddhist recognition of impermanence, I tend to expect that things will break, that plans will go wrong, that my attempts to budget will get wrecked. That everyone dies. This isn't pessimism. I'm not negative or morose. In those moments I have to confess that, deep down, I'm probably a nihilist, I always make sure to qualify it: "but I'm the happy kind."

This doesn't make me a pessimist any more than my expectation that good things will happen makes me an optimist. Of course good things will happen. They have. They do. Ditto bad things. I like it better when the former outweigh the latter but again, apart from statistical advantages I have no control over that. 

If the universe doesn't owe me anything, then I can't be disappointed when I don't get it and I can't afford to be triumphalistic when I do. The good things that happen are either the consequence of things I hope I'm smart enough to repeat or they're random happenstance. Bad things are either the consequence of things I hope I'm smart enough to avoid or they, too, are just happenstance.

I'd like to beat the odds, but I might not. Not everyone can or the odds would be different to begin with. I'm okay with that.

Everybody dies.

Lucky Man

"No, wait ... I'll tell you something," said Zaphod. "I freewheel a lot. I get an idea to do something, and, hey, why not, I do it. I reckon I'll become President of the Galaxy, and it just happens, it's easy. I decide to steal this ship. I decide to look for Magrathea, and it all just happens. Yeah, I work out how it can best be done, right, but it always works out. It's like having a Galacticredit card which keeps on working though you never send off the cheques. And then whenever I stop and think -- why did I want to do something? How did I work out how to do it? -- I get a very strong desire just to stop thinking about it." -- The Hitchhiker's Guide to the Galaxy

It's just after 6am when I pull into the gas station about a mile from our apartment complex. It's a two-hour drive to where I'll be teaching for the day and it will take a tank of gas to get there and back. I don't mind the drive; seasoned road warriors know there's a serenity to the open highway, and I have podcasts to pass the time when that serenity eludes me.

It's the kids' first day back at school, and I've left Dawn with most of the morning routine, except for Willy's morning pills and whatever we were able to do the night before. It's still hectic, and I'm on the road before the real chaos starts.

We spent Labor Day getting everything ready -- school supplies, clothes, lunches. We made lists and charts and schedules. We drilled the kids on their routines and responsibilities until we couldn't stand any more eye-rolling. Everything went off without a hitch, except Dawn got to work and realized she didn't pack a lunch for herself. Such is a mom's life.

Dawn and her ex moved to the same apartment complex after they separated, which means there are three of us around for parental support (and supervision). They've remained friends and he pops over now and then for a beer or dinner or to pick up some leftovers we've saved back for his lunch on the night shift. I joke that it's a very postmodern arrangement, and I've thought about pitching the premise to Fox as a sitcom. We just need a couple of catchphrases and some canned laughter.

Because of the move, however, the kids are too far from school to walk and outside of the district to be bused -- except for Willy, who gets bused regardless. That translates into three kids needing to get to three schools at three different times via two different means of transportation around three different work/sleep schedules. I'll spare the details, but the logistics are such that even with the three of us on task we still have to enlist the help of one of our neighbors. It takes a damn village.

The truth is, though, that things are going remarkably well. Amazingly well. Almost uncannily well, as if orchestrated by cosmic forces. Things have fallen into place with refreshing regularity and we're grateful, even if we're a little fuzzy on where such gratitude should be directed. This is common, of course -- what couple doesn't feel their love to be fated in some way?

I'll take well-worn clichés for fifty, Alex.

On the one hand, it does feel like that, even in a more general sense: we've both lived lives that have pretty much just worked out, beyond our ability to orchestrate them. I have applied to and attended exactly four schools in my academic career -- I figured I'd go somewhere and I did. I can only think of one time where I was granted an interview but didn't get the job, and it's hard to shake the feeling that in most cases just the right job showed up at just the right time.

This feeling is not uncommon. Daniel Quinn called his memoir Providence, and it narrates what is for him the uncanny process by which he arrived at his life's work. Kelsey Grammar, in his memoir, describes his own sense that the universe was somehow making his path straight.

I recently heard an interview with David Sedaris in which he confesses his belief that the right thing will come along if we are but patient and hard-working, and it worked for him: he kept plugging along writing articles until one day a publisher called him to see if he had a book they could publish. "I've been waiting for your call my whole life," he said. "I have one in my drawer."

The Tao te Ching adjures us to wait until the muddy waters clear and the right action presents itself. The Taoist concept of wu-wei describes a kind of flow, rolling with life's changes in the way that a good surfer neither fights the waves nor succumbs to them.

It's not hard for me to see each life as having its own genius, one that we are to lean into and go where it takes us without regret or triumphalism.

On the other hand, neither of us really believes this. We'll say it was "meant to be" but we do so with the irony of those for whom "meant to be" isn't really a thing. It's too hard to reconcile with a world in which there are brain disorders, tsunamis, and only one season of Firefly. Providence, if that's what we're going to call it, might narrate our experience but I shy away from it as a way of making sense of the universe.

Maybe it's all a matter of perspective, and I simply have a better attitude than some people. It could be that I just stumbled independently upon the power of positive thinking. Metaphysical musings aside, it's become almost axiomatic that positive people tend to experience the world more positively, and negative people more negatively, with some fuzziness as to which way the causality arrows are pointing.

But what about all those people in situations where positive thinking isn't going to help them? There are millions of people in the world in situations that are simply and abjectly cruel if part of a cosmic plan, and putting a positive spin on that isn't going to do them any good. If I take any part of my own experience, make it normative, and extrapolate from it a path to success and happiness, I'm a tube of hair gel and a good dentist away from being Joel Osteen.

No thanks.

More likely, it's a matter of confirmation bias and selective memory. We humans have a predilection for pattern recognition, even when the patterns aren't really there. Add to that some dumb luck and some underacknowledged (or even subconscious) machinations on our part, and it's no wonder our lives seem charmed.

In the end, "meant to be" is an affirmation, a way of calling something good. It's a way of saying we believe -- not in fate or cosmic forces, but in us, in our own future.

I get home around nine and Dawn has saved some salmon for dinner. "How was the drive?" she asks.

"Uneventful," I say. "Just like I like it. How was your day?"

"Let me tell you," she says, her smile weary but content, "the morning was crazy..."

Live and Let Die

It's Saturday, and I have to work, so I ask if there's anything I can pick up. Since I'm stocking shelves at grocery stores, it's easy for me to grab something on my way out.

"We need drinks for the pool party tomorrow," Dawn says.

"Okay," I say, "what should we get? Do you like piña coladas?"

It's an innocent question at first, but I immediately know where I want to go with it.

"Oh, sure," she says.

"And getting caught in the rain?" I deadpan.

"Absolutely," Dawn replies, without missing a beat. "But I'm not much into yoga."

I'm not into yoga, either, but I've been practicing something recently I call "bolus judo." "Bolus" refers to the way we feed Will, using an open syringe as a funnel and letting gravity do the work. Another option is to use a pump, but that option has been precluded by Dawn's discovery that she can't substitute her laptop charger for the pump's power supply.

The bolus feed is precarious, as I explained in an earlier post, because it involves an open syringe of formula in range of limbs akimbo. What I've discovered is that I can put the side of the bed down and swing my own leg up to block Will's arms. I'm not really pinning him -- my leg is draped over him with my foot on the far side of the bed -- but it does keep his arms out of the way.

Will's summer school is with the county school district rather than the city proper, so it's a different facility. It's also a much more robust facility for special needs, with a dedicated full-time nurse, a pool, great equipment, and a high teacher-to-student ratio.

These are the people who fixed his wheelchair, and his teacher regularly texts pictures of his activities and progress. This is not to slight the teachers and aides at the city school, who were fantastic; they just didn't have the same resources. We're looking at keeping him with the county school for the next school year and beyond.

The hitch is that the county school won't recognize the Do Not Resuscitate order, or DNR, on file for Will. Not without a court order. The director is sympathetic; there's currently a family pursuing such an order, and the school has helped them find an appropriate lawyer and has generally been cooperative and supportive. It's less a rancorous clash of wills than it is a collective attempt to jump through the proper hoops.

The decision to put a DNR in place is fraught and complicated. It means leveraging our ability to prolong life against the quality of that life as well as the life of the rest of the family. It's an alarmingly real-life variant of Lifeboat, involving not just real people but your own children. Put the most starkly, it requires sussing out the conditions under which you are willing to let your child die.

There's no clear line for this. There's a point at which prolonging life is inhumane, but that point is by no means obvious, and sorting that out is different for every family and every situation. There's no appealing to what is "natural" (a long-deconstructed notion anyway); in completely "natural" terms Will wouldn't have made it nearly this far -- but then, neither would many of the rest of us. "We're already keeping him alive by feeding him through a tube," Dawn points out.

To go through the arduous process of coming to such a decision -- consulting with doctors and family, wrestling with the ethics involved, starting into the abyss of mortality -- and then have that questioned a priori by a board policy can be demoralizing. For the board, it's a matter of liability; for us, it's a matter of parental rights.

Dawn and Todd didn't come to the decision to establish a DNR for Will lightly, and it is intended to represent their wishes in those cases when they can't be present to make those wishes known. Almost the only time Will is not with one of us is when he's at school, meaning that the one place a DNR is most likely to be relevant is one where it's not going to be honored.

It's the same ticklish, ironic structure as being on hospice. This seems to pop up everywhere. I'm reminded of Zaphod's reaction in Hitchhiker's Guide to the Galaxy the first time they use the Infinite Improbability Drive, whereupon they miraculously (or, rather, improbably) pick up Arthur and Ford seconds after the latter are ejected from a Vogon airlock: "Is this sort of thing going to happen every time we use the Infinite Improbability Drive?"

"I'm afraid so," comes the reply.

My understanding is that while the DNR is legally valid, it's not legally binding. It effectively establishes parental or guardian wishes but does not obligate anyone to follow those wishes. That, apparently, takes a court order, and the University of Michigan's Advocacy Clinic has agreed to represent us. They're trying to work out co-plaintiff status with the other family, otherwise we'll have our own case. Either way, we hope that it sets precedent for other families. Surely the board doesn't want to get sued every year.

It's especially frustrating because Will's previous school was receptive to the DNR without any legal wrangling. Again, that structure: the better facility for special needs is the one fussier about a legal detail common among special needs families, especially involving terminal conditions like Will's. Does this sort of thing happen a lot?

I'm afraid so.

The piña coladas were a bust, so I tried my hand at making a Bloody Mary. The end result? I won't be trading in the coffee and papers for bartending anytime soon.

But I'm going for gold in bolus judo.

Stuck in the Middle with You

I pull into the Meijer parking lot at 2:30 and punch in on my Blackberry (yes, those still exist). For my Coke job, I'm on the road, going from store to store stocking shelves. The Blackberry is how we clock in and out and how get our route and keep track of what we've done at which location -- how many cases we pulled, whether or not anything is out of stock, etc. It's also our only contact with the office, by email (usually) or phone. I haven't been to the home office in months.

The first thing I do is check the coolers in the checkout aisles. These we stock with 20 oz. single bottles of our main products, and they're the first thing the higher-ups would check if they visited the store. Stocking the coolers is a little like having your towel with you in Hitchhiker's Guide:

A towel...is about the most massively useful thing an interstellar hitchhiker can

have.... For some reason, if a strag (strag: non-hitch hiker) discovers that a hitchhiker has his towel with him, he will automatically assume that he is also in possession of a toothbrush, face flannel, soap, tin of biscuits, flask, compass, map, ball of string, gnat spray, wet weather gear, space suit etc., etc. Furthermore, the strag will then happily lend the hitchhiker any of these or a dozen other items that the hitchhiker might accidentally have "lost." 

Basically, if the coolers are stocked, the supervisor will assume you've got everything under control and simply haven't gotten to the other bits yet, whereas if the coolers are a shambles this will cast something of a pall over the visit.

I say this as if such a visit has actually happened, which it hasn't. I also haven't seen any of my supervisors since training. But the effect is real; if I go into a store and  the coolers are in good shape, I immediately assume the stop is going to go well in general, even if that happens to not be true. Someone told me that sales from the coolers alone pays everyone's salary but the truck drivers, but this strikes me as a tall tale. Unless that includes vending machines; that might actually be plausible.

Today the coolers look fair but they need some attention, and I am just completing my perusal of them when the day guy catches up to me. A typical route is four or five stops with the same Meijer outlet as the first and last stop. That means that sometimes I run into the day merchandiser when our stops overlap.

He tells me that the bad news is they've cleaned us out of two liters and the coolers need to be hit, as I've already seen, but the good news is he's got the backstock all organized and ready to go. We talk shop and a little gossip and he heads out.

I head to the backstock area -- and it is nicely organized -- and load up an L-cart with 20 oz. singles, which we just call "cooler pop." I'm in the middle of stocking the coolers when my phone rings (my regular phone, not my Blackberry). It's not a number I recognize, so I just answer "Ted Troxell," in case it's a student (I'm teaching an online class) or something official. Usually it's a telemarketer.

This time it's not a telemarketer or a student. It's Will's teacher.

"Hi, this is ____ from Will's school." I'm immediately on edge: I've never gotten a call from the school before, but he's in summer school now and this is a different facility. She immediately puts me at ease.

"Everything's fine," she says, but she wanted to let me know that their resident MacGyver had fixed Will's wheelchair by using one of the ankle straps, which we don't use, to repair the lap belt, which was broken. She wanted to make sure that was okay, which had me wondering in what kind of scenario that wouldn't be okay.

Will's been on hospice care, which has been a great boon. An aide comes out to give him a bath twice a week and a nurse and social worker come out every other week. Most of his care is coordinated through this one service and they do a great job. He's managed to avoid any major hospital stays and is, in general, healthier than he's been in a long time.

There are some downsides. He has to show signs of regression in order to keep qualifying. If he makes too much improvement, he'll get kicked out of the system and we'll be navigating things on our own. It's the medical analog to the welfare recipient who gets a job and then no longer qualifies even though they still need the help.

Lately he's been having trouble with seizures and chorea (erratic involuntary movements) and even as we're trying to address those issues we're also secretly glad that this might be enough to secure his place in hospice a couple more months. It's an odd world to live in, where you simultaneously want your child to be healthy and to regress enough to qualify for hospice, precisely because it's hospice care that's doing the most to keep him healthy. It's not just a catch-22; it's Derrida's pharmakon inverted.

Another artifact of being on hospice is that we only get about two weeks of Will's medication at a time, so it feels like we're constantly running low. The idea is that a patient in hospice is dying, and not just in the Sylvia Plath/Eastern philosophy sense in which we're all dying. Ergo, they don't need a stockpile of drugs.

(It reminds me of a scene in Brighton Beach Memoirs. Eugene's mother sends him to the store for a quarter pound of butter. He complains that she sent him just that morning for a quarter pound, so why didn't she just have him get half a pound then? "And suppose the house burns down in the afternoon," she says. "Why do I need an extra quarter pound of butter?")

It also means that the insurance company won't cover both hospice and repairs to Will's wheelchair (it also won't cover prescribed modifications to the chair, like a headrest that would keep Will's head from flopping, or additional equipment like something to sit in besides the broken wheelchair). Dying people don't need to be secure in their wheelchairs, apparently. They're dying anyway, right? It makes a certain kind of sense, in a systemic corporate logic kind of way, but not on a human scale.

"Are you kidding?" I tell Will's teacher. "Of course! Thanks so much." We exchange pleasantries and hang up. It's just a wheelchair strap, but somehow I feel lighter, like for awhile I might be able to believe in humanity. It's the little things, I guess. I text Dawn to let her know, and then I have to get back to work.

These coolers aren't going to stock themselves.

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."

"What?"

"Spring peepers. Frogs."

"Oh."

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.

Ahem.

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.