Where does spirit live? Inside or outside
Things remembered, made things, things unmade?
-from “Settings,” Seamus Heaney

Today I’m thinking about singular moments and how we make and re-make our experience. Today I’m thinking about wonder, and possible pathways to it.

Ronan has been hanging out with our first round of visitors – C and J have been feeding him and playing with him and reading him his favorite books. We laugh and hold him; we marvel at how beautiful he is, how wonderfully made, and yet, as one Tay-Sachs mom put it frankly, “these babies never get a chance in this world.” From the moment of Ronan’s birth this disease has been chipping away at him, unmaking him in some bizarre reversal, with each lived experience taking him backward into a world we cannot know or understand. Each day I feel him moving away from us, and away from an easy understanding of what, in fact, he experiences moment to moment. What is his world like? How can I imagine its texture, its light?

Months ago I had a dream that continues to haunt me. In the dream, I sit up and ask, “Where’s the baby?” but Rick is not next to me; I am alone. I get out of bed and walk into the kitchen. I have forgotten to put on my leg (and yes, in other dreams I have remembered to do this, remarkably), but the dream mind, ever wise, swiftly crafts a solution: I will float. I am floating in the kitchen and I realize that the dining room chairs are hanging from the ceiling. The house is empty. The world has been reorganized in some new and terrible way; in the dream I am sick (and still floating) and the chairs, nailed up, are rocking back and forth and I’m hollering into the empty space, in a bitchy yet anguished and very Job-like voice, “What’s next?”

I woke up with that dream print on me – like pain, it was difficult to explain
or describe – but I recognize it now as dread in its purest form: a still
moment, like the moment of calm before catastrophe strikes. And the feeling held onto me. For days I was swaying in dread. I felt as if I’d landed in the wrong place; I felt poised for something terrible to happen, for the “what’s next” to reveal itself. I had the dream interpreted by several people in Santa Fe (by qualified therapists and by other folks working outside of the proverbial
psychotherapy box), but the interpretations fell flat. “You are afraid of
chaos.” (Who isn’t?) “Your life has been turned upside down.” (Yes, I thought, but in positive ways.) “Your totem animal, a lion, has invited you into the kitchen to create.” (???) Like pain, dread appears to lack both metaphor and explanation, but I recognized the feeling descending on me in the moments after we received Ronan’s diagnosis. The chairs, the floating, the sickness, the dread. Dread is the worst kind of fear, marked, as it is, by an absence of hope. Each day I work to push it down. I work to intellectualize it (right now) as if this might banish it, but like grief, dread’s close cousin, its morphology is constantly shifting.

I’ve been thinking of that dream during these past few weeks, annoyed that my big bad expensive brain cannot accurately picture or imagine what Ronan’s experience might be like, the quality and texture of it (as one neurologist noted wistfully, “We still know very little about the brain,”) and then I looked at the photographs from my friend Carrie’s recent art show, entitled, simply “Breathe.” And I literally took a breath. Just as I recognized the experience of dread in my dream, I felt a moment of recognition looking at her art installation. If I had to choose a place where Ronan would dwell, now, moment to moment, and later, when he is not with us, in some difficult-to-imagine but inevitable future, I would choose this space. Why? Because Carrie created that rare, raw, enchanting experience that many of us render impossible because we analyze and criticize and categorize what we see and think and feel: wonder. My friend had created the experience of wonder: dazzling, new, strange yet familiar, fragile, and yet full of a deep, overwhelming emotional power. I felt a remarkable, palpable relief, the opposite of the dread I felt on Ronan’s diagnosis day, which another Tay-Sachs mom accurately described as “being kicked in the womb.”

This fall we went for a hike when the aspens were changing in the Sangre de
Cristo Mountains near Santa Fe. As the road winds upward, you begin to see a pale yellow haze in the sky that strengthens as you approach. As you round the last corner, laid before you is a blaze of impossible color. Stretching down the mountain is row after row of trees, swaying and luminous and endless. Giving off their own light, unfiltered and shining. I once sat at the edge of a cliff on Inishmore, an island off the west coast of Ireland. A thick fog had made invisible the road we’d traveled to the edge. We waited for the fog to withdraw, our voices lost in the waves crashing below, barely able to see our hands threaded together on the ground. I used to walk the streets of Dublin at three in the morning, past lace-curtained windows and broken stoops and abandoned balls sitting idle in the street. And on a sunny fall afternoon in Provincetown, when the tourists were headed out and the locals and the artists were hunkering down for a long winter (but first those delicious and sparkling autumn days) I met an artist and immediately recognized a friend.

The fragility of my understanding of this world is vast. But my imagination is
muscled and robust and has plenty of stamina, and when I think of the aspens, or the particular quality of the pre-dawn Dublin city air, or the clamor of the ocean, or every first meeting I’ve had with a person I love, or when I look at the photos from Breathe, I feel the possibility of what it might be like to lack understanding, or dread, or fear. The experience, it seems, is not unlike those “dream print” feelings, or early memories that carry emotional weight but no sequenced narrative (my brother at the bottom of the stairs, waiting for me or just standing?; a crack of light under a doorway and the shadow of my mom’s hand moving through it; a pink rocking horse rocking in the breeze near the window.) Moments that aren’t analyzed or folded into story; moments that stick.

Was that dream of the chairs on the ceiling (and now I remember that line from a Jane Kenyon poem about the death of her father “that’s why babies howl; this is the abyss”) Why those strange, convulsive naps at Yaddo, when I would be pinned to my skinny twin bed with fear, and then trot off in the rain, pensive and grumpy, to dinner in the Mansion? Some futuristic motherly instinct? Probably not. But the mind strives for connection, meaning, answers.

I feel plenty of fear; that strong sense of dread has not left me and will not,
I know, for a long time; it will wear on me and it will change me. This I cannot stop. I dread all the changes, especially that last change. But other moments have stuck too: walking with Ronan in the aspens, that sheer light through his eyelashes, the way he shouted louder when he understood that his voice would carry far through the clean, raw air. I see him dwelling, now and later, in Carrie’s landscape of wonder; I imagine his life lived as a series of singular, fragile moments. I hold his hands, touch his forehead to mine.

I feel loss, of course, in so many ways, even a loss of my own innocence during those long days of pregnancy, and during Ronan’s first few months of life. It took Breathe to remind me that the loss is mine, not his, in some significant way. Yes, this disease will take him from this world, will take his life, and it’s true that the number of his days was determined long before he could make a decision to transform the life he’d been given in one direction or another. He was denied that, but I can’t imagine or believe that his world is so remote, so unknowable. I can’t believe that he is denied wonder. What if every moment of Ronan’s life is, for him, like stepping free into a space, into a “first,” into wonder? (Seamus Heaney again, from this poem “Stations”: It was as if I had stepped free into space
Alone with nothing that I had not known

In Joy Williams’ short story “Taking Care,” the main character brings  his dying wife home from the hospital for the last time. Their troubled daughter has run off to Mexico, leaving her baby daughter in their care. As his wife’s condition worsens, the man has steadfastly continued to carry out the tasks of living: feeding the dog, cleaning the house, caring for the baby. The last line of the story – “together they enter the shining rooms” – is a brave and masterful stroke: subtle, entirely earned, and ambiguous (is it or is it not heaven? I think it is just that single moment, with nothing beyond it); each time it leaves me breathless.

Pure experience without editorializing by the intellect: that must be Ronan’s
world. It’s the only place I can imagine him right now; it’s the only place
where I can bear to leave him behind. And although I lack the knowledge to
inhabit his world in the intimate way I would like, and although I cannot go
with him into any new place that might be beyond this place, and although I fear that he will be alone, lost, and that it was my job to accompany him there, when I look at Breathe, I imagine – although perhaps intuit is a better word – a feeling of wonder that is outside narrative; I imagine Ronan breathing through all his moments with us, exquisite and perfect and with everything he’s ever needed or known as he enters, moment to moment, that shining room.

8 responses to “Breathe

  1. Like. Immensely.

  2. Alma Luz Villanueva

    The ‘shining room,’ the wonder shimmering through Ronan’s life, through your life, all of our lives…I forgot to breathe. And the dread that comes with that wonder, the human balance TO FEEL SO MUCH…that dream, I’ve dreamt it, we’ve all dreamt it if we’re truly alive…gracias, Emily… xoxo

  3. Beautiful and real. The descriptions of the moments between the moments where often much of life takes place are so eloquently described here. Stunning.

  4. Absolutely incredible, creative, and soul stirring. Thanks to Carrie for her amazing visual creations, which in turn fuel your literary narrative.

    You are giving voice to Ronan’s precious life…a life that gains significance with each of your blogs. …. touching many hearts….xo Dad

  5. Tender and deeply touching.

  6. You leave me breathless, Emily. xoxo

  7. Emily, reading this writing you are doing is like watching an alchemist go through all the steps and struggles of invention and creation. What you are putting into words is truly golden. This writing, so infused with and born of suffering, is just amazingly handled, lovingly handled. I am sending your little family my prayer for happiness where you find it. love to you. -ekh

  8. Alison aand Mark Lang

    Dear Emily,Rick,and Ronan,
    Love looms in our hearts for all of you.Keep writing,loving,and an ancient Irish wail whenever yyou feel the need.
    love,Ali and Mark p.s.We are petioning the heavenly realms for you all.

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