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.

Movement = Play = Love

Every time I turn around these days, Leif is standing on top of a table, grinning broadly. At sixteen months old, my son is a stealth mover, quick and quiet. If I simply look away for an instant, he pulls out a chair whose seat is as high as his chest and levers himself onto its flat expanse, using a dip of his shoulders and head to haul up his legs. He then lifts one leg to the side to bridge the span from chair seat to table top, and pulls up to standing.

Why? He's not usually after any object in particular--he is not even tall enough to see what is up there--though once there he inevitable notices his brother's glass of milk or an uncapped marker. He climbs spontaneously, almost instinctively, whenever a chair enters his field of perception. Or a couch; the toy box; a flight of stairs. A parental leg, or a sister's back.

What motivates him, it seems, is less any retrievable object than the doing of the movement itself--the sheer joy of its accomplishment. He is in a phase where this urge to climb is his movement pattern of choice for connecting with his world and discovering what it has to offer him: what new sights and sensations will this chair-climbing, table-scaling move generate in me?

Leif's play reminds me: movement matters. Moving our bodily selves is not just about strengthening our muscles so that we can hold up our heads. How we move is about how we play. How we play is about how we learn. And what we are born to learn is how to love.
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I have been watching Leif move since before he was born, and seen a progression not only in the kinds of movements he has made, but in the focus of his play with those movements. At each stage, he is learning and making new movements, for sure, but he is also exploring different qualities of bodily movement itself, motivated, in every case, by an impulse to discover and connect with whatever will provide him with the nourishing nurture he needs to thrive.

At first, Leif's movements seemed random and purposeless. His arms and legs fluttered and flailed. Any patterns were as chaotic as any current, with his physiological makeup banking the flow. The one exception was the movement he made to connect with the stream of sustenance coming from me. That move had purpose.

Yet it was soon evident that Leif's seemingly random movements were giving him all kinds of information about himself and his world. Every movement was a hook, pulling in impressions about how it felt to move that way and what happened when he did. Every movement yielded some new sensation of weight, force, and gravity; space, time, and causality; temperature, pressure, pleasure, and pain. His random movement was both pure play and systematic research at a sensory level about his self and world.

Some of the movements he was making connected him with a range of sensory pleasures that felt good--a nourishing flow, a warm embrace, a facial grin. These movements began to make him. He learned from them, repeated them, and as he did, the locus of his play began to shift. No longer was he playing with movement simply at the level of sensation, he began playing with movement patterns themselves. Aware of the pleasure that mouthing for milk provided, he was soon experimenting with what else he could put in his mouth. Would sucking on it yield the same nourishing connection?

There were other preferred patterns too. The same movement pattern that pulled his knees to his chest could curl him into his dad's arms, roll him over, and help him hold himself up.

His play with these movement patterns, again, began to open new registers of knowledge and new dimensions of play. Suddenly he was using his movement to play with objects, but not because the objects themselves were interesting. What he wanted to know was what his preferred movement patterns could do with whatever new item he could hold in his hand. If I bend my arm at the elbow and hurl my hand forward, what will happen to this ball? Or a sock, a piece of toast, or my brother's truck?

Soon enough, Leif was honing in on particular objects and exploring the different movement patterns he could make and with what results. That spoon could get apple sauce to his mouth. It could also leave a broad smear of it across his chest, make a clanging sound when hit against his cup, and when dropped from the high chair, verify that gravity indeed works.

Suddenly a ball was really exciting, because of all of the different movement patterns it enabled him to make. He could throw it, kick it, sit on it, play toss with it, and put it into his wagon.

This object-oriented play is what we typically mean by the term "play." When we think of play, we think of toys--objects specifically designed to elicit developmentally appropriate patterns of movement.

Even then, however, as most parents know, the best "toys" are found and not made. Leif can spend long minutes with a plain cardboard box, climbing into it and back out again, putting on the lid and taking it off, turning it upside down and sideways, loading it up with other toys, and taking them out again. The box is so exciting precisely because it doesn't preprogram his play. It requires, or enables, him to play at the levels of sensation, movement patterns, and patterns of relating. The possibilities are infinite.

The same is true for table tops. What can't you do on them?

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The play with the sensory and patterning potentials of movement that I see in Leif is never over. We humans are ever and again mobilizing the movement patterns we know in relation to new contexts, objects, and persons, looking for connections that will yield the sensations of pleasure we associate with nourish and nurture. The sensations of pleasure we associate with love.

The objects with which we play, of course, evolve. As we grow, we move to emotions and sounds, words and imaginary realms, books and songs and dances and cultural forms of all kinds, in an increasingly complicated network of movement patterns. Yet in every realm, we play--making movements we know in order to open us to what we do not. We move to connect in life-enabling ways with what our movement is constantly revealing to us.

Yet, this observation also yields a withering critique of our culture's chronic and characteristic ills. Our realms of play have dwindled to such an extent that we rarely if ever play at a sensory level, or even the level of pattern making. We no longer know what to do with boxes or spoons, a blank sheet of paper or a blank hour. We prefer toys that will tell us which moves to make, and games that remove us to a finite world of someone else's making. We play with objects designed to exercise and reinforce particular sensory and kinetic options--not open new ones. We play with ideas, with information, and with plans for the future, but not with our sensory, movement-making selves. Even when we move, we want to learn someone else's forms, to "play" by someone else's rules.

We claim that we have no time for play, but time is not the issue. The issue is that we have forgotten why movement matters. We no longer value the ability to make new movements, to find our own movements, from within the infinite range of our sensory potential--movements that will connect us in life-enabling ways to the places and persons who matter most.

We have forgotten that the ability and the willingness to discover new sensory moves is very skill that enables us to learn to move with another, dance with another, in a word, learn to love.

When was the last time you climbed onto a table?

Learning with Leif

Lately I’ve been empathizing with small Leif.

We often hear about how challenging the first few weeks of life are for the parents. We hear about sleepless nights, inexplicable bouts of crying, a learning curve requiring crampons, and tidal waves of love and longing. Meanwhile, the mother’s body is putting itself through an extreme makeover as the uterus balls back into a fist, and breasts swell beyond recognizable bounds. Challenging indeed.

Rarely, however, do we ask about how challenging those first weeks are for an infant.

What about Leif? What are the first few weeks of life like for him?

I have been watching Leif closely. Not only does the mere sight of him hug my heart and leave me drenched in milk, I also have a secret agenda. I wrote What a Body Knows since my last birth in 2005. In the book, I draw upon my experience with my children to advance theories of human development and, in particular, theories about the role of desire in guiding us towards the health and well being we seek.

I can’t help but wonder: will Leif prove me wrong?

Watching him in this past week, I have been struck by an idea both ancient and newborn: it is so difficult to be a body!!

We imagine that infants have it made. Everything they want is done for them. They are fed, dressed, rocked, and pampered, worry-free. They need not provide for themselves; caregivers are at their beck and call. A couple of cries and helpers come running. They eat and sleep, snuggle and coo, while making a transition from a watery world to this earth of air and sky.

Is it true? Look.

Leif is lying there on the bed, calm and quiet, staring at patterns of light on the ceiling. Suddenly out of nowhere a small fist smacks him in the face, opens up and scratches. His eyes scrunch shut, his head shakes left and right. He has no idea that the invader is attached to his arm, or that he moved it, or where exactly the missile hits. He has no idea he is responding. The sharp sensation surprises. It comes out of nowhere, registering in a proximate space of nowhere, with a difference that marks his distance from the womb where resistance was constant and impact dulled by fluid.

The beating stops and his face scrunches pink. His small self is overcome by pushing. Grunts he doesn’t know he is making erupt with the efforts he doesn’t know he is enacting. It sounds as if he is giving birth. The push releases in an explosive burst, filling subterranean spaces. The noise triggers his startle reflex; his eyes widen and his arms flail in open air. What was that?

A blast of cold air shocks the explosion site. Warm wetness turns cold and a colder wetness wipes. His cry plows through air, an expression of pure presence. Then the even temperature returns with a wrap, snap, and crackle. Warm again.

Moments later a pang of discomfort follows, occurring in some region between where the missile hit and the explosion erupted. Something feels trapped. Impulses to move ripple through his body, causing limbs to piston open and shut and his lips to tremble. He utters a small “whaa!” and hears the cry. Huge arcs of energy coming from nowhere scoop him up and rest him on his belly. With several whacks from a surface the size of his entire back, a large bubble emerges, releases. The discomfort, wherever it was, eases.

Suddenly a sensation of want opens up in the space that the bubble left behind. He already knows: there is a particular taste he desires, a shape, a smell, a belly-warming stream, a beating-breathing softness. Yet, he has no idea of where it comes from, why, when, or how. He has no name for the one who gives, or for his bodily self that receives; no sense of his own agency in making it happen. But it does.

The sensory shapes he is shift. A large orb mysteriously appears, and the mere flicker of knowledge he has flames into consciousness as his consciousness. Opening his mouth, latching on, sucking, he does the only thing he knows how to do: draw sweet nourishment into his bodily self.

At first the taste guides him. It touches his desire. Then consciousness expands to include other sensations. With the touch comes a voice. It comes before the taste, during the taste, after the taste, and only sometimes without the taste.

He is now realizing too that the taste and the voice go along with a face—a pattern of colors and shapes that keeps returning. The face moves; it moves him to move. He moves, and it moves back. Smiles cross through space, linking felt sensations of pleasure with the visions of another.

I am watching his consciousness take shape in the form of movements—patterns of coordinated action that change his sensations from cold to warm, stinging to smooth, empty to full, falling to snug. It is what his body knows.

Leif is the rhythms of his bodily becoming. He is born moving, and as he moves his movements register a seamless sensory flow. He is how he moves; sense and response are one. By moving, he is giving rise to a sense of body and self, of desire and will, of person, place and thing. It's all in the book.

Talk about a learning curve! Talk about endless days and nights! Talk about unexplained sounds and smells and touches and tastes! I see the bewilderment and wonder in his riveting eyes, his vibrating hands, and his antenna toes as he creates and becomes himself.


Parents have it made during those first few weeks. They already know how to eat, poop, burp, and move their limbs. It’s easy for us! Or maybe not. For we are bodies too, also on the frontier of our own becoming, generating new patterns of sensation and response that guide us in finding the pleasure we seek in caring for bodies newly born.

Maybe the most challenging parental task, then, is one we have never stopped facing, and one we barely recognize: how to do what our infants are already doing in being the moving bodies they are.

Can I become your mom?