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.