When an Infant is Dying

A friend of mine, the writer Emily Rapp, has a one-year-old son named Ronan, which means "little seal."

In January, at age 9 months, Ronan was diagnosed with Tay Sachs disease, a progressive, genetic disease with no cure. Over the next couple of years, Ronan will slowly die. Emily was tested for Tay Sachs while pregnant, but the standard test only checks for nine primary varieties. There are hundreds of mutations.

Emily is keeping a blog of her experience, and asked me to contribute. Here is what I offered. For more about Ronan, please visit: Our Little Seal.
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Today, as I write my way into the ring of voices drawing together around Ronan, I marvel at what I hear. Throughout these pages sounds a sustained, tenacious refusal to grant any meaning, purpose, or reason to Ronan’s diagnosis. There can be none. There is no stroke of luck, no will of god, no hand of fate at work. There is only Ronan, sitting and smiling and dying and shattering our expectations of what would, could, and should be; only Ronan, as his squeezable self, reaching with pleasure for toys, ears, lips, fingers, and hearts. Only Ronan, slowly stilling, as the chorus around him swells.

What do we make of this?

We cannot not try to make something. It’s human. It’s what we do. We make things. Sometimes what we make is meaning, but not because we need meaning per se. We make things because we feel pain; we feel a feeling we don’t want to feel. We feel a feeling that impels us to find new ways to move—new ways to think, feel, and act that will not recreate, in this case at least, the despair at living in a world where beloved infants die. We make things because we can and want to move our bodily selves in ways that feel good—in ways that stir in us an affirmation of life.

So what do we make, what can we make, of this?

I am a philosopher and a dancer, on a mission to affirm bodily movement as a source of knowledge and even wisdom. I ask: what can a body know? Emily asks me: what does Ronan’s body know?

What does Ronan’s body know?

What every body is and knows: he knows how to move. He knows how to make the movements that make him who he is. Heart beating, lungs pulsing, nerves crackling, muscles firing, Ronan is making patterns of sensation and response that align his bodily self with the resources, the pleasures, the arms at hand. He is remembering these patterns (reaching, smiling, sucking, kicking), playing with them, and using them to explore his world (what happens when I suck toy, finger, bottle, block?). His sensory realm is open, not yet cluttered and confined by the culturally-inherited patterns of sensation and response encoded in objects, language, values, and ideas. He is in touch with freedom and a creativity that we too easily forget in our mind-over-body world.

So too, with every move that Ronan makes, he calls to those around him, inviting us to respond, such that we create and become our own patterns of sensing and responding that relate us back to him. We make new moves, consciously or not, opening up new spaces of sensation that are us that we would not have discovered were it not for him. We do so for our own pleasure—for more of the smile that lights our bellies, for the clasp of his squeezable self.

Yet as Ronan grows, he will stop remembering the patterns he has made. He will never extend his play to shapes or words or numbers. Moving less, he will sense less and respond less.

Even as patterns fade and his sensory span thins, however, Ronan will not stop making movements in the moment, for the moment, with whatever sensations he has and is. Ronan will keep exploring and playing with whatever appears, until there are no sensations left. Until he dissolves into light. It is what his body knows.

We, on the other hand, will not stop remembering the patterns we have made in response to him. Because of him, we have discovered stretches of sensation that we had not before. Our thoughts and feelings and arms will reach out for him and find that there is nothing there.

What are we to make of this?

Ronan is showing us the way. In making the movements that he is making—at the most basic levels of sensory creativity—Ronan invites us to do the same in response: to feel what we are feeling, and find in our pain an impulse to move.

So, we howl, weep, and flail; walk, dance, and sing; write, counsel, and agitate for change. And as we do, we know in our bodily selves what Ronan also knows—what he, is reminding us—that our primary pleasure as human beings lies in making new moves. Doing so, we bind ourselves back to life in an affirmation of what is.

Must we accept that nature toys with our hopes and dreams, indifferent to our desires? Must we believe that we are out of control, at the mercy of forces of creation and destruction beyond our imaging?

No, for as we experience the power of our own movement, we know viscerally and palpably that we too are part of nature. Life is very much for us, actively creating the world through us, at least in the scope and scale of our moving, making bodily selves and the rings of relationships we create to sustain them.

Nevertheless, in becoming parents, we open ourselves to a conundrum faced in some degree by every person who cares to create in whatever medium they prefer. What comes through us and into the world is both wholly and thoroughly ours, and a complete mystery.

In becoming parents, we open ourselves to a combined stream of genetic material, reaching back 400 generations, that pools in our cells, waiting to (pro)create. We open in this way because we want more in our lives. We want to know more, experience more, give more, become more than we are and have been. We open because, at some level, we know there is more to love.

Yet we never know what will emerge. We open to welcome as a very cause of our being something or someone we do not know. Something that in its ultimate mystery is still us, extending our sensory surfaces. Our vulnerability in the world. Our hopes and dreams and desires. We feel with and for and through our children because we are them and they are us.

Here then lies the ultimate parenting challenge: how can you affirm the life of what is (also) you to such a degree that you are willing to let it live, on its own terms, in its own way, according to its own logic, even when that law and logic baffles?

It is tempting to think that Ronan can be separated from his Tay-Sachs gene, but I do not believe that this is true. Ronan is who he is—his sweet and magical self—because of that gene. He would not be who he is without it. The movements he is making invite responses in us.

Ronan is perfect as he is. He is unfolding in time as the nature in him desires. Our hearts break, our minds protest, our limbs flail through empty space, but Ronan is perfect. And once we affirm this, we are free to move with him, to be the movements with him and for him that will allow him to complete the arc of his life as fully and richly as possible. We let go. We let live. It is what we can do. It is love.