The Still Point Of The Turning World (9 page)

Our family faced gruesome choices: how would we know when Ronan’s quality of life had diminished to the point where letting him go was the more humane option? Was it when he stopped swallowing and vocalizing, when he could no longer see us or experience our loving touch? Any of these eventualities might coincide with the option for a feeding tube (the most likely first intervention) or they might not. These decisions are made more emotionally complicated by the fact that the medical community in this country has become expert at prolonging life to the point of being unwilling or unable to engage in any nuanced discussion about what it is they’re saving. With the exception of hospice, doctors offer little help to parents who are navigating this bleak terrain.

Case study: The neurologist/pediatrician/geneticist felt that the choice
not
to insert a feeding tube for a child with a “terminal illness” was “ridiculous.” Some other (in all fairness, solicited) advice: “I wouldn’t want to starve to death.” “We don’t let babies starve to death in this country.” “Feeding tubes are easy.” So the decision to reject a feeding tube was tantamount to . . . murder?

“But,” I countered, “we’re not talking about a starving child living in some country where food is not available and that’s why they’re starving, are we?”

A brief pause. This doctor knew where I was going. I didn’t like being called a murderess. “No,” he said finally.

When I worked for a world relief organization in Geneva, I met women whose children had died from malnutrition, diarrhea, typhoid, war-related violence, meningitis, malaria, botched abortions, fevers and the flu. In Ronan’s case it wasn’t an issue of a growling stomach, a bloated belly. He had not contracted a disease that was a direct result of living in conditions of squalor and forced poverty.

A nurse put Ronan’s index finger in a tiny machine to take his pulse. He found this amusing and squealed at her.

“So, if the body is no longer able to eat, it’s kind of like an animal who stops eating and then goes out under a tree and dies,” I said. “It’s a sign. It’s nature stepping in to take over.”

“All good,” the nurse said, and let Ronan’s finger slip free. He looked up at her and smiled as if he wanted her to do it again.

“But we’re not talking about dogs, we’re talking about people, and a feeding tube is easy,” the doctor continued. The reference to dogs upset and alarmed me. I felt my face getting hot; I was ready to go to war (with him, with anyone). But he was also making his point.

A feeding tube was “easy.” It may extend life by six months or longer, but this paved the way to other, more serious interventions that Rick and I would not consider, because all the while the brain was fading, fading, fading, and then it was gone. No, it wasn’t just an ability to think that made life, it was eating, breathing, moving, hearing, seeing. That might coincide with the option for a feeding tube or it might not. No crystal balls, sadly. When he couldn’t interact or hear or feel or see us, was it just a beating heart we were saving, and why?

When my memoir about growing up with a disability was published in 2007, I was asked to comment on the situation with Terri Schiavo, who was on life support at the time and whose condition galvanized a national debate about quality-of-life issues the way Baby Joseph’s did, however briefly. I got huffy and offended, because how dare they ask a disabled woman, just because she’s disabled, about a woman who is in a vegetative state, as if these two situations are equivalent? After Ronan’s diagnosis and all of this torturous thinking, I had plenty to say. It’s an issue of whether or not a person—Baby Ronan or Baby Joseph or any person—will be alive in the world—reacting to it, aware of it,
in
it in any significant way at all.

Three hours later, after this initial encounter with doctors, we were handed this competing worldview from the hospice doctor: “When the body can no longer feed itself, sometimes it is uncomfortable to provide nourishment. It’s the body’s way of shutting down.”

“So it’s not cruel, right?” I asked. The room was well lit but not with fluorescent lights; it was borderline cheery and homey. We sat around a mission-style wooden table. It felt as if we were all sitting down together, not so much to discuss a disease but to discuss our baby, this person Rick and I loved more than any other person in the world, including each other. I half expected a mariachi band to start playing or someone to bustle over and ask if we’d like to order a margarita.

“It is not,” he said, and then, looking right at me, as if he knew I needed to hear it, he repeated, “It is absolutely not cruel. It’s what the body does; it knows what to do. And so do we. We know how to help people die.” I handed Ronan to Rick and put my head in my hands and sobbed.

Hospice care refers to terminal illnesses as “life-limiting” diseases. The head nurse wore a floor-length velvet skirt and blond bangs. Another gave Ronan a blinking light that we quickly named his Ronan-Wan-Kenobi life saber. In this room in the hospital’s pediatric wing, the sun lined the nurses’ faces; they wore IDs on lanyards that made me think of my years as a camp counselor and the way I once sternly instructed the kids in my charge: “Don’t. Swing. Your. Lanyards!”—and I had a sharp pang in my gut, wishing Ronan would grow up to be one of those slouchy, grumpy kids on the cusp of adolescence, a kid with acne and attitude and a budding libido that excited and confused him. Liberated from the sharp angles and cold tile floors of the Mind Center, the energy here was muted, respectful and solemn, but also wildly celebratory in a way that was almost euphoric. There were circus posters on the walls and padded chairs to sit on. The physical therapist gave us a blanket made by some Lutheran women in Albuquerque. I could easily picture them sitting around a long table in a spic-and-span church basement that smelled of bleach and sugar, eating
krumkaka
and sipping weak percolated black coffee, chattering away. Nobody said, “I’m sorry.” What they did say: “This is a journey, and we are proud to be on it with you.” I believed them. It was almost as if we had all gotten together and said, “Well, we’re all going to die. Isn’t it a relief?”
One usually begins to pose the question of the meaning of life and reflect on it in a fundamental way when one is suddenly ambushed and overpowered by a painful question: “And what next?” A question essentially the same as the question “So what?”
Václav Havel writing from prison, August 15, 1981. So now what?

That afternoon we learned that kids are dying all over the state as they are all over the world, every moment, all the time. Kids dying from leukemia, from other metabolic disorders that are similar to Tay-Sachs and have the same end result, from bone marrow cancer and liver and kidney disease, from neglect and abuse and violence and the effects of wrenching poverty. Kids and babies die, but in our world of the “miracles” of modern medicine we don’t expect it, we say it’s “wrong,” we kick and rail against it. We say “tragic.” We ask,
How
can this be happening?

So were the Canadian doctors who refused to perform a procedure that had no possibility of leading to Baby Joseph’s recovery passing judgment on the
value
of his brief life as the Priests for Life insisted? No, they were passing judgment on the
quality
of his life. Nobody was debating whether or not Baby Joseph’s life was valuable—to his parents and to the world. But the controversy surrounding this single baby gave rise to difficult questions that all of us, parents or otherwise, work hard to avoid considering: What standards are we willing to use in order to judge the quality of any particular life? What kind of life am I willing to subject my baby to?

As a mother I was charged with making impossible decisions about my child’s right to life, and I argue that it was Ronan’s right to live as fully as possible, in the world, with at least some of his faculties intact, and that it was my burden and my right to determine when his quality of life had become irretrievably compromised. When my son’s brain was devastated and his body destroyed by this disease, to refuse to prolong his life through medical intervention would say nothing about how valuable he was to me, or how impossible it would be to quantify his loss.

The first time Rick and I met with Ronan’s care team at the Children’s Hospital—an arduous day of one pediatrician, one neurologist, three hospice nurses, one hospice doctor and one physical therapist—Rick was nervous and talked a lot; I was thirsty and starving but almost gagged when I tried to drink the lemonade that seconds before I’d been desperate to guzzle. Between meetings with the members of our mighty crew we fed Ronan in the hospital cafeteria and picked at a few stale bagels. “How can you eat?” I asked Rick. I felt like punching him, punching someone.

He gave me a sad, bewildered look, a slight smile, and said, “I’m like a dog. I’ll eat through anything.” He took three bites, one after the other.

“You eat like a prisoner,” I said unkindly. “This isn’t a fucking prison,” I said, but as soon as I said this, I realized that it felt like one. He ignored me. I offered an insincere apology and stared out the windows at people in the courtyard: nurses eating salads and pointing plastic forks at one another to make a point; a drug company representative (his briefcase was an advertisement) talking to a beleaguered-looking doctor; another seemingly depressed family with a six-year-old who didn’t look sick, but then who knew?

After an entire day spent discussing Ronan’s end-of-life options, I talked for the next few days, for hours and hours, with three different mothers who did not use feeding tubes and whose children died before age three. I kept saying,
Yes, that’s how we
feel. Exactly, exactly! What are we prolonging? I know, I
know.
I wanted someone to tell me that we were making the right choice. I finally turned off my phone minutes before another scheduled phone chat with a mom. I wanted to take a nap, eat one of Rick’s gourmet dinners, go to my friend Nouf’s birthday party and drink too much sparkling wine. All of which I did.

We could only do for Ronan what we would do for ourselves: Rick and I didn’t want tubes even waved around in our vicinity; we were not, as the saying goes, “bitter enders.” With that in mind, we tried to make these absurd decisions for our son. The stakes couldn’t have been any higher, and I felt totally unprepared for the reality of his death, even as I often longed for it, if only to release him from suffering.

Is it Christianity that makes this discussion about death such a chore? Traditional imagery envisions life versus death as a confrontation of warring factions, a battlefield struggle. In
Life After Death,
the theologian T. A. Kantonen writes, “Christian faith not only affirms fully the reality of death but also looks upon death as an enemy to be overcome. Then it goes on to affirm that in the conflict between life and death the decisive battle has already been fought and won.” A militaristic myth of salvation, then, with Christ as the quartermaster, the celebrated general with his saints marching on for triumph and plunder. Yet another overcomer narrative. Great.

For many people the concept of heaven is a massive comfort. This didn’t work for me: I couldn’t picture Ronan floating, cherubic, into the arms of the grandmother and grandfather I’d never met, or hugging and kissing all the people I’d loved who had died, as if I could determine a roomful of my loved ones and magically place him there in the middle of a celestial family reunion of Rapps and Gormans and Slagells and Dohertys and Kakaras: Ronan ex machina. Would these people even enjoy being in proximity to one another in heaven or anywhere else? How would they recognize one another and what age would they be? Does heaven have rooms or puffy cloud condos and stringy cloud strip malls or what?

Buddhist theories discuss death as the final gateway of life, a threshold. I liked this idea, as well as the image of a doorway; it helped me imagine accompanying Ronan right up to that line, that threshold, even if we could not cross over it with him. In this country, in this culture, we have become exceptionally good at “saving” lives, but we are “rubbish,” as my friend Emily would say, in terms of understanding what the hell that means. What are we saving and why? Who gets to make the choice? How do you respond ethically when you are asked to make the choice for someone else, for your child, for your baby whose life is, literally, in your hands?

At the hospital, as we were wrapping up our discussion about Ronan’s end-of-life care, the head hospice doctor, who wasn’t harried like most doctors—in fact he seemed to have all the time in the world—said, “We know how to help babies with life-limiting diseases.” Is “life-limiting” just a silly, euphemistic way of saying “terminal/about to die/totally doomed”? Are these tweaks in language similar to the discussion of “differently abled”
and
“handicapable” versus “handicapped,” “crippled” and “disabled”? Is it just semantics? Maybe, but I liked the idea that “life” was at least acknowledged in the hospice version of Ronan’s condition, even though these folks are the ones who will be helping us prepare for his death. Life and death together. The ultimate pairing. Truly the only one that matters.

“We have to ask, at every stage and with every possible intervention,” the doctor went on, “what is this for? What does it lead to? What kind of a life is he living?” In other words, if the life is truly limited, when there is no cure, then what are we prolonging? He was wearing a blue shirt. His hands were square and strong, builder’s hands; he had a fireman’s muscled arms. A doctor—a man—who helps people die.
How does he feel in this body right now?
His job was to help us answer these questions about Ronan and make decisions about next steps. We shook his hand and he left the room. I thought,
The next time I see that doctor Ronan will be dying, and not just in the abstract but for real.

The meaning of Ronan’s life was not to teach me; we often say this about people who defy our notions of normal and I find it pathetic, patronizing, and a way of distancing ourselves from our own fragile bodies and tenuous lives. I don’t believe that disabled people exist to teach people life stories—that is not their purpose; it isn’t anyone’s purpose. We are not “the disabled,” some shapeless, teeming mass of nonnormative bodies designed for teaching purposes, like some kind of specially designed pedagogical barbarian horde.