Aside

Of a Beautiful Child

Of a Beautiful Child

 

I am becoming cicada husk, the cool

Throat of an empty vase, the dark space

Between stars. You touch me and I see

That monstrous child Montaigne pitied

On the streets of Paris – my inseparable twin

 

Hanging from the center of my chest,

Your head where my heart should be, my heart

Pushed aside.

-From “Overripe,” by Danielle Deulen

In the news today, a young toddler was denied a kidney transplant that would save her life. Because she suffers from a rare and “complex” genetic disorder (as if genes were simple in anyone’s case), has severe mental and physical impairments and is not expected to live past the age of three, the doctors felt it unnecessary to conduct any procedure that might extend the time she had in her body. The outraged and panicked mother blogged about it, causing a flutter of letters – petitions, really – to be sent to the hospital, lobbying for the transplant that would save this girl’s life.

Whose life matters? Who counts? Which bodies are worth saving? Protecting? Loving?

In Michel de Montaigne’s essay, “Of a Monstrous Child,” the author, often deemed the “father of the  essay,” whatever that means, turns the word monstrous on its head. His tiny two-page missive about a child he sees in the street – a “double body and these several limbs” – has the Swiftian power of a brick in the face, a bullet crashing through the folds of the (what he argues is a very closed) mind. Yes, he pities the child, but not in the “oh, heavens, that poor thing,” way that I’ve been accustomed to all my life. As my grandmother said many times with a deep sigh, looking me up and down, “Well, at least you’re smart. That’s something.” My body was not enough, it seemed, and would never be. And now I have a son whose body cannot live in a world that pities him. It’s enough to make me walk around with a brick of my own, but reading Montaigne, I’m reminded that it might be better to walk around with some eyeglasses, some funky-ass, new-agey, look-through-them-and-the-world-becomes-a-scene-from-the-matrix-or-from-your-idea-of-the-afterlife eyeglasses.

Montaigne unpacks the reason why people stare at me when I swim at a public pool. Why people let their eyes linger over Ronan’s floppy limbs, his sightless eyes, his trembling hands.  Why our eyes are drawn to the faces of burn victims, missing limbs, identical twins, people of short stature – anyone who falls outside the normative standards of what makes a body, what makes it valuable. (It’s like that scene in any war movie, when the music gets all dark and serious and then amputees start crutching by, looking miserable and haunted and trailed by a nurse with a dour, doe-eyed expression). Quoting Cicero, Montaigne says, “What he sees often, he does not wonder at, even if he does not know why it is. If something happens which he has not seen before, he thinks it is a prodigy.” The burden, then, falls on the looker, and the looker is held accountable for the lens through which she sees – and sorts – the world. I love the way Montaigne makes that child in the essay extraordinary in the truest sense: brilliant and shiny.  The thing you want most to pick up when it glints at you from the street. The man born blind in the Gospel of John did not exist to make people feel grateful for their vision; the text is very clear that he, in fact, possessed the vision that others did not. That his was a looking that saw wonder, saw God, when others did not. His body was not a punishment; it was a kind of divine revelation.

A politician (who will go unnamed, so as not to give his “ideas” any greater currency) stated that disabled children are a woman’s punishment for having abortions in her sullied, slutty, ho-bag past. The notion of the “sins of the father will be visited on the sons” being visited on our country’s political scene. Disabled people as metaphors, as objects of disdain, neglect, as warnings, as punishment. Players in the freakshow. Pushed center stage so that others’ fears about what is normal, what is valuable and loveable, are pushed to the side – this, Montaigne seems to be saying, is true obscenity, if obscene means a total lack of imagination about form and variety, shape and possibility. In a world we know just about everything there is to know about molecules and neurons and photons and the smallest bit of what makes life life, we still pity those whose variety doesn’t fit with our limited notion of what variety might entail. Look again, I hear the essay saying now, reading it in light of Ronan’s situation. Look again, and look deeply, truly. Don’t just look at what’s on the stage, look behind the curtain, look up to the lights.

For deep truth is always simple, often deceptively so.“This story will go its way simply,” as Montaigne says. I will take my child out into the world. People stare at us. In my mind I imagine giving them these eyeglasses, fitting them gently over their face, and then asking them to look again (this last part perhaps not so nicely). Look at me and Ronan, in our bubble of simple, unconditional love. Brutal  and true and sad and rocked by the truth of death-in-life. Colorful. Weird.

Who should we pity? I pity myself before I had Ronan, before he rocked my mind, my heart. I pity the lens I was looking through, cloudy and dark, a lens that made the world small and mean and inscrutable and limited.  “We call contrary to nature what happens contrary to custom,” Montaigne seems to be reminding himself at the end of the essay. What are the customs in our culture? Hateful politicians, starving magazine models, greedy corporations, a society fueled by the word “get.” The “imperfect” child that is only 14 months old in “Of a Monstrous Child” is a child Montaigne pities not so much because of the shape of his body, but because he has been confronted with, over and over again, the limited capacity of the human mind, our myopic ways of looking, our refusal to see past what is presented to us, our unwillingness to challenge custom.

I see beauty and tenderness in Montaigne’s detailed description. I feel grace. I look at Ronan and see perfection. I see my son. I see the truth, I see his rockstar, off the charts, blonde and green-brown-eyed, pale-skinned beauty. I see something extraordinary, the slick lip of transcendence, the edge of something I have always intuited but until now has been unavailable to me — off sight, out of reach. I hear something – a song, a sonar, a wave. Ronan rides at the center of my chest — his body against mine, his body from mine. I am relieved of the husk of what I was. I am new, which is a kind of revelation or redemption without a fixed endpoint. I feel my old, cold heart pushed aside for one that is explosive, boundless, electric, powerful, and beautiful – mine, yes, but also Ronan’s.

14 responses to “Of a Beautiful Child

  1. Beautiful and thought provoking, as always.

  2. … So beautiful. Thank you. Reading your essay is like undergoing mind’s eye cataract surgery…
    … Love to Ronan.

  3. “a song, a sonar, a wave”…I’m weeping in San Miguel, the beauty, tu corazon, your heart, and Ronan’s…

  4. Upon discovering the enormity of beauty and, perhaps ironically, perfection that exists beneath the physicality of my daughter, I found it increasingly difficult to wholeheartedly despise the very illness that ultimately challenged me to look beyond my own myopic measures of magnificence.
    And while I’m reluctant to rationalize my child’s disease into some PC opportunity for disability-sensitivity-training, I remain eerily appreciative of the experience of knowing Rachaeli just as she was. In all fairness, I imagine that Rachaeli plus some Hex-A would be just as wonderful as my enzyme-deficient child, but would I see that? Would I truly challenge myself to discover what can perhaps only be seen through the lens of Tay Sachs? As my daughter lost her vision, did I gain mine? It’s not an exchange I’d ever request, but these lenses have allowed me to see a landscape of beauty that I previously littered only with pity and token niceties.
    It is a miserable, wonderful privilege to discover that within the very vessel we define as imperfect exists the model of unblemished perfection.
    I look forward to meeting your perfect Ronan in Orlando.
    Thank you for sharing his magnificence with us all.
    eric
    (Rachaeli’s abba)

  5. Talya Jankovits

    Still reading….always

  6. Thank you for writing, for witnessing, for you, for Ronan.

  7. Emily this is so beautifully written. I did cry. Your love for your most perfect son is beyond words, yet you manage to find them. The precious gift of your dear sweet Ronan. Sending so much love to you and him.

  8. James Vincent Knowles

    Thank you Emily. For you to know such Love and be able to share it so incredibly purely with words … thank you. You’ve touched the heart of a stranger and helped open it and heal it. My love to you and your child Ronan. It is important for you to know your love of your son has affected another’s soul and infused it with compassion and Grace.

  9. Thank you, as always, for what you write. My prayers continue with you, Ronan and Rick.

  10. emily,
    i hope to always look through the eyeglasses you mention and see the truth, the beauty, the backstage and the lights. you and ronan continue to be an inspiration.
    christy

  11. This is amazing, thanks so much.

  12. Simply gorgeous and transcendant. We are spiritual beings above all else. Ronan shines; he is perfection.

  13. What an incredible post. I haven’t read Montaigne’s essay, but I will.

    I particularly love your statement, “we still pity those whose variety doesn’t fit with our limited notion of what variety might entail.” I agree that we should frame disability as embraceable human diversity.

  14. I never know just what to way to you. I always check here for new posts. This post brought me out of lurkdom, remembering all the children I taught who were “those whose variety doesn’t fit with our limited notion of what variety might entail.” My favorite children. Mostly when I read here I wish I could help somehow, know Ronan and you, offer comfort. I keep you both in my prayers and heart, as many others do. samm

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