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.

Arguing for Peace

At this time of year, many citizens of the western world celebrate the winter solstice, with its returning light, as the coming of peace. The prince of peace is born.

Tell that to my five year old, Kai. He loves to argue. I know, because he told me. A few months ago, when, in response to my “no,” he spun an elaborate argument for why he should be allowed to watch a video, I exclaimed, “You should be a lawyer!” (deftly changing the subject). “You are really good at making arguments!”

I watched as his face softened into a beatific grin. “I love arguing!” In a flash he screwed his smile into a mock grimace and pointed his finger at me: “It’s all your fault!” Indeed, I thought, I’m sure it is.

Still, I wasn’t ready to begin my solstice celebration with an argument. It wasn’t even 7:30 AM when Kai found me in my room. “Kyra’s not being nice!” he complained. He was upset. “She and Jordan are keeping secrets! She whispered something in his ear and she is not telling me what!”

I checked in with Kyra. Sure enough, she had been asking Jordan for help in making Kai’s Christmas gift. I turned to Kai to talk about it, calmly and quietly. “They want to give you something.”

“They are not being nice!”

“Would it be nice if they didn’t want to give you something?”

“They aren’t telling me what they said!”

“They want it to be a surprise!”

“They don’t like me!” And so it continued. Kai was insistent and furious: not telling equals not liking. There was no other equation that made any sense to him. I sighed and sent him along to talk with his dad. I was supposed to be working anyway. 

In the kitchen Geoff ran through the same reasonable logic I did with similar results. Suddenly I heard Kai make a new move: “If they tell me, it won’t ruin the surprise, because I won’t know what package it is in!”

The boy is five and he won’t give up. He will argue with a passionate and precise fury for what seems, to an outside observer, to be right there in front of him. He wants to be included, and he is!

Is his passion so hard to understand?

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I think back to what I have been learning since I realized that he “loves” to argue. One thing is that “arguing” means something different to Kai than it does for me. I don’t like to argue. I prefer peace. I see the two as mutually exclusive. If someone argues with me, I assume that they don’t like me. For Kai, it is nearly the reverse.

Before I understood this about Kai, we had been periodically getting stuck in the same conversation that went something like this:

Kai: “I love you, Mom.”

Mom: “I love you too, Kai.”

“But I love you more than you love me.”

“I love you so so much, Kai!”

“You don’t like me.”

“I love you, Kai!”

“No you hate me.”

And so it would go, with Kai insisting that I hated him, until I would finally resort to something like: “Kai, when you say that it hurts my feelings!” At which point he would be convinced that he was right. I didn’t like him at all. Not one bit. He would start crying. I would then give up, change the subject, and try to get him interested in something else. 

It was so confusing to me. How could my best efforts to tell him how much I love him backfire so profoundly? Why, when I was telling him something, was he arguing with me saying that I wasn’t?

But after realizing how he loves to argue, I began to get it. One day, when he told me that he loved me, a new move arose in me. I went with it.

“Oh no, no, no, Kai. I love you!” Instantly his face lit up. It was a game and I was playing.

He came back: “No, no, no, no! I love you!”

“No,” I said, carefully and with great, exaggerated emphasis, “you just don’t understand. I love you!!”

And there we are, “arguing” back and forth for several minutes, our large loud mouths smiling at one another.

It worked. I was so incredibly relieved to have found a way in. We kept having the same conversation, with the same warm feeling of a result. Then it occurred to me. Kai argues with me because he loves me. More to the point: he argues with me because he wants me to argue back with him—or at least, to argue with that part of him that might doubt my love for him or fear his worthiness in receiving it. He doesn’t want to feel that doubt or fear. He wants to be in—in-cluded, in the loop, in the light.

By arguing with me, he is sounding out this darkness inside himself; in wanting me to argue back, he is asking me to help him dissolve it, defuse it, and find his way to more presence, more intention, more love. To help him find his way into the light, I need to move with him into the dark, into his dark.

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A few days ago, we were having our “No, no I love you” dialogue when suddenly, he stopped. He looked at me intently: “Mom, we don’t have to play this game anymore.”

I peered back at him. “You mean, I can just say, Kai, I love you too!”

He smiled at me, “Yes.”

I saw the light. Or rather, Kai and I saw it together.

Perhaps that is what the morning’s argument is reminding me to celebrate. 

The Home-Work My Son Loves

My fourteen-year-old son hates homework. It’s not the work per se. During school hours, Jordan is happy to learn and will lecture at length on fine points of modern history or the properties of an equilateral triangle. Give him the same assignments at home, however, and he perceives them as an intrusion of his time and space. An injustice.

Home, he reasons, is for other kinds of work. Home is for milking his cow, Daisy, and planting potatoes. It is for chopping down a tree with an ax whose handle he carved, and then using Bright and Blaze, his team of young steer, trained to a yoke he shaped and shaved, to pull the log into the barn, where he and his sisters will hack it into firewood. Home is for churning cream he skims, from milk he squeezed, into butter and ice cream (though not both at once).

While school is for schoolwork, home is for home-work.
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The question of education is in the news, running alongside concerns about the United States’ ability to sustain its place in the evolving global economy. We are familiar with the refrain: innovation, creativity, and entrepreneurship will secure us jobs. Schools must teach the next generation these essential survival skills.

So far so good. The next question, of course, is how? Can you even teach creativity? The oxymoron is evident. Some deny that it is possible. But what does it take to be a creative, innovative entrepreneur?

For one, it takes the perspective required to see a problem as a problem in the first place, independent of what others think. It takes the passion of wanting to do it better. It takes the patience to wait for ideas to come and mature, and the persistence to brook the resistance new ways inevitably elicit.

In short, if we want to nurture creative problem-solvers, we need to help kids develop an intrinsic desire to unfold what they have to give in making the world a better place to be.

Did I say it would be easy?
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I recently read NutureShock, a book about parenting practices that unmasks our common sense ideas as not so sensible after all. One chapter focuses on theories about how to develop the “executive functions” of the prefrontal cortex that aid us in planning for the future, carrying out strategies, and harnessing our impulses to them. These executive functions are almost always described as a top-down kind of self-control: mind over body. Until recently, the road to such skills has been paved with training that focuses primarily on the intellect.

However, as NutureShock relates, the balance is shifting, for researchers are discovering more effective means of developing these skills. Project-based, case-driven, collaborative learning opportunities are being proposed in which students design, carry out, and even assess their own work. When students learn what they need in order to solve a problem, they know that what they are learning matters. They know why. They care, and so invest more of themselves in learning.

In the preschool years, such learning is called imaginative play. Ask a four-year-old to sit still and you may get thirty seconds. Tell him that he is a dragon guarding a precious jewel and you might get four minutes. Involve a jewel thief, a dragon family who loves the jewel, and the magic rainbow it opens, and he may sit for twenty.

The same logic works for a twenty-year-old. Put her in a life-like situation, and see how learning disciplines improve. Why? Those so-called executive functions are fueled and funded by our emotional, sensory selves. It’s not so mind over body after all.

If our aim, then, is to nurture passionate, patient, persistent problem-solvers, the plot thickens: how do we teach our kids to play?
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I am learning with Leif again. Master of rolling that he has become, he no longer needs to pull his knees to his chest to initiate the move. He simply twists his torso, belly button first, and rolls to the side, hauling his legs behind him. He learned this torso twist because the leg-lifting, jack-knife move he practiced so many times arranged his body in this pattern, pulling it into his sensory awareness as a possibility. He learned it, he perfected it. Now, this corkscrew is his move of choice as soon as you lie him down, for example, when attempting to change his clothes or a diaper.

Once on his belly, however, he finds himself again at the horizon of his abilities. Stuck. He tries arching his back and lifting his arms and legs off the floor, waving and kicking, while making the sound of a strangled cat.

Then, after several moments of ear-scratching screech, he resorts to that same knees-up pattern of movement that taught him how to roll in the first place: he pulls his knobby knees up under his body. Lo and behold he finds his toes. They connect with the floor. Executing his usual downward push, something unusual happens: he finds himself launched forward in space, at the edge of his blanket, forehead to the floor. Wow!

What’s happening? Faced with a new challenge (belly down), Leif mobilizes a pattern of sensation and response he already knows how to make (knees up). When he does, the familiar pattern takes a different shape in relation to gravity and weight (toes connect). He learns about him self and his world based on what happens when he makes it (face to floor). The pattern evolves (a bit more up). He repeats the experiment again and again, playing with the possibilities, and hones in on those patterns of movement that unfold his potential to move some more (he's almost crawling!). The movement Leif is making is his making him.

While the spinal movements Leif is making are basic to human health--at the core of yoga, dance, and other physical disciplines, overlooked to our detriment in our sedentary lives--what's even more important about Leif's adventures is the process he is engaging. He's playing in the most fundamental way we humans can: discovering and creating the patterns of sensation and response that make him who he is. He is not just moving, he is exploring and unfolding his potential to make new moves. He is playing at his own horizons and doing so because it is fun. He is participating in the rhythms of his bodily becoming.
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To survive in this century, we are going to need to learn to make new moves in relation to the most basic elements of our ongoing existence--food, water, air, earth, and its human and animal creatures. We need to be able to play--to envision, plan, and carry out scenarios that anticipate the impacts of our actions on the health and well being of the earth in us and around us. What are we creating?

We might think that once we learn the basics of rolling, sitting, crawling and walking, it is time to restrict the focus of learning to our intellects. However, for our thinking to remain free, flexible, and responsive to our time, we need exercises that challenge our intellects as well as bodily practices that call our attention to how our movements are making us. To respond to the challenges we face, we have to care. We have to know why it matters to our bodily lives, and to do either, we need to move in ways that bring our senses to life.

It’s our home-work.
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Bright and Blaze may not know it. They are not just pulling a log. They are pulling into existence a passionate, patient, persistent problem-solver.