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he belonged. He was mercifully free of this thinking; it had, however, helped me to make sense of my own experience of being his mother. For Ronan there was no sense to be made, no change to seek out, no potential to actualize. His life was a collection of singular, unrepeatable moments that were not analyzed, remembered or regretted. What a relief for him and for me.
    “I could never do what you do.” “I don’t know how you cope!” “He is the definition of heartbreak.” These are, at their base, simpleminded, misguided and, of course, quite rude remarks, not to mention shortsighted and stupid. Nobody is immune to disease or sickness or any other catastrophic event, and we are all just a disease, a decade, an accident away from disability. So we’re afraid. Confronted suddenly with an experience interpreted as tragic and world-ending, people feel helpless and stumble over their words. The death of a baby seems to go against nature, against the advertisements on television about the miracle of birth and the unadulterated joys of parenting, against our hopeful delusion that being good people might keep chaos at bay. But chaos finds everyone, or as the philosopher Ziusudra mourned in 2700 BCE: “Fate is a wet bank, my friends. Sooner or later it will make you slip.”
    We all want to believe that we’re on solid ground and that we won’t be the ones to tumble into the mud. But we will. Of course, spouting the existential ponderings of an ancient Sumerian or a dissident writer might be a bit much for the supermarket checkout line or even among a group of artists, intellectuals or writers who are supposed to be thinking on a less quotidian level. We all want to feel in control of our destinies, our wishes and desires; we crave the illusion of control.
    In ten years we will have the sequenced genome. We will believe that it is possible to know everything there is to know about who and what we are and adjust expectations and outcomes accordingly. Maybe our genetic material will be included in online dating profiles. Maybe I’ll be able to sit on a couch and ask the people sitting opposite me in leather chairs which diseases they carry (because all of us carry something) and which ailments they will likely develop (state the odds, please, for effect) when they age. Maybe I’ll ask,
How can you possibly live while carrying around such unfortunate genetics?
We think we will know how to eliminate risk and illuminate only possibility. We believe we’ll be able to see everyone from the inside out. We’ll be shining our flashlights into one another’s mouths, probing for a look, for some great Truth. Will we really want to look? Is that how we want to be known?
    We Americans thrive on notions of self-improvement and transformation; we believe this is part of our national ethos and are befuddled by situations that defy solutions. But as those of us who have or have had sick kids know, some situations can’t be fixed. Instead they must be borne in whatever ways we can manage. I decided that I was not responsible for managing other people’s rude reactions or misconceptions. I was unable to mitigate other people’s fears, but I could certainly love Ronan. That was my only job. Babies with disorders like Tay-Sachs don’t care about perception, or measuring up, or looking a particular way. I tried to remember this when people stared at Ronan. His experience of being different was
not
mine, and it did, in fact, force me to rethink my own coping strategies, my own lifelong neuroses, my own obsession with being one of the “normal” pack, finding a place, a way to be, a home.
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    My real-life search for home was exhaustive and nomadic, spanning numerous cities and countries, houses and apartments, jobs and relationships. It took years, but by the time I arrived in Santa Fe in the summer of 2010, I thought I had finally figured it out. I had a steady teaching job, a slew of terrific and loyal friends, and