Courtesy of the Artist and Galerie Lelong, New York.
Courtesy of the Artist and Galerie Lelong, New York.

I was a twenty-five-year-old doctoral candidate at Harvard when my second child, whom I had already named Adam, was prenatally diagnosed with Down’s syndrome. My doctors and advisors strongly urged a very late-term therapeutic abortion. I had a few hours to make a decision that shook me to my bones: Would I bear and raise a mentally retarded child, or abort the baby I’d already come to love?

As I considered my options, something curious happened to my view of life itself. Adam was considered better off unborn because he would lack characteristics that society values: good looks, high earning potential, savoir faire, and so on. But come to think of it, I knew plenty of “normal” people who also lacked these things—like, for example, me. Furthermore, even the most gifted individuals might lose their advantage through accident, illness, or age. The lucky few who avoided all catastrophe would still find death waving coyly from the finish line of their enchanted lives.

In the intensity of a life-or-death decision, all the “real world” values I cherished seemed to dissolve, like sugar in water. What I lost that day was not just the hope of having a perfect child. It was the illusion that anybody ever “has” anyone or anything. I’d been shoved face to face with the naked realization that there is nothing anyone can hang on to forever, nothing we can be, do, or possess that we will not lose.

I decided against the abortion, not out of moral judgment but because of my emotional connection to Adam—and my newfound willingness to accept the fact that the course of any life, not just the life of a handicapped person, is utterly unpredictable. This triggered a period of intense mourning. For months, my inner narrative consisted entirely of a rambling, anguished Elegy for Everything, for the transience and impermanence of all I had once depended on. But then something unexpected began to emerge from the rubble of my preconceptions: a strange, new kind of peace. I felt as though I’d jumped off a cliff, and found that though the fall was frightening, the landing never came. I had nowhere to stand, but the sensation I would later come to call “groundlessness” was not as bad as I had expected. Loosening my grip on achievement, prestige, power, money, or whatever, I found that letting go had a healing resonance I’d never felt while holding on.

In the fifteen years since Adam’s birth, it has become increasingly obvious that he is some sort of Zen master wearing a blond-mentally-retarded-boy costume. His approach to life is free from conceptual rigidity or expectation; he simply takes experience as it comes, moment by moment. Sometimes there is pain, sometimes pleasure, but there is no need to judge these things, or to pretend they are not what they are. In one of my favorite Taoist stories, an old man astounds onlookers by swimming happily under a raging waterfall.

How does he do it? “It’s simple,” the man explains. “I go up when the water goes up, and I go down when the water goes down.” This is Adam’s approach to life, and though I have learning disabilities in this area, I’ve learned much from his example.

Pema Chödrön once commented that what will happen to us during the rest of this day is as unknown to us as what will happen at the moment of our death. I loved this thought so much that I repeated it to a couple of friends, who became very upset and told me to shut up. That moment reminded me how much I gained when I lost everything. Managing my life by fearing loss had always felt like a prison, especially since it was so obvious that loss is inevitable. I found inexpressible liberation in accepting the world as it is: transient, fluid, uncontrollable, filled not only with danger but also with breathtaking beauty, adventure, and delight.

One of the few certainties we can rely on is that sooner or later, all of us will have an Adam—an event that rips the rug from under our feet and leaves us nothing to stand on. It’s an experience I wouldn’t wish on my worst enemies, but I have often wished it for my best friends. If it hasn’t happened to you yet, lie back and relax. I promise that it will be here soon enough.

Moving On

Grief is like a stream running through our life, and it’s important to understand that it doesn’t go away. Our grief lasts a lifetime, but our relationship to it changes. Moving on is the period in which the knot of your grief is untied. It’s the time of renewal. Not a return to life as it was before the death you experienced—you can’t go back, you’re a different person now, changed by the journey through grief. But you can begin to embrace life again, feel alive again. The intensity of emotions has subsided some. You can remember the loss without being caught in the clutches of terrible pain. The armoring around our hearts begins to melt, and in this period of moving on, the energy that had been consumed by resistance is now available for living. Now we move forward, but we’re not abandoning the one we love. We understand that even when someone dies, the relationship continues. It’s that the person is no longer located outside of us. We are developing what we could call an internal relationship with this person, and that allows us to reinvest in our life. If we follow the path through grief to wholeness, we may discover an undying love.

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