Guest Blog by Elizabeth Tannen!

A beautiful post by my friend, the terrific and talented writer Elizabeth Tannen.


            It’s evening in Santa Fe, and I’m standing with Ronan in his bedroom. He lies on his changing table, his body still, sheathed in a long-sleeved onesie dotted with penguins. I stand above him, beside the closet of his small, colorful clothes, next to the Big Apple Circus poster that reminds me of childhood in New York. 

            My response to being with Ronan is binary.

            In this moment, his presence soothes me with a visceral calm: a singular sweetness, a, soft, peaceful feeling. The perfect shape of his tawny eyes, the soft of his hair and skin; I stroke his body and feel at ease.

            But hours later, as I lie falling asleep in the next room, my mind lurches with the urgent, burning fury that Ronan’s illness provokes. It asks impossible questions: Why must you be this way? Why can’t you tell us how you feel? Stay longer? Be someone you’re not?

            For the past two years I’ve taught creative writing to undergraduates. Teaching them to shape stories has reminded me of the basics of human nature: those things that seem obvious, but we don’t always consider. Mostly, it’s renewed my attention to the human need to know why: to seek connections, to explain why one thing leads to the next, to know how people fall in and out of love, why people get sick and live or get sick and die. How can I avoid this fate, we ask, or achieve it, myself?

            At a restaurant earlier the same day I sat with Emily and Ronan and roiled with anger at an older couple sitting next to us: the ones with matching Lululemon from their morning run and stiffly coiffed hair.

            Why did they fill me with such rage? I wear Lululemon, sometimes, too. They weren’t even intrusive, like the older man in a knit cap who wandered over like some self-anointed Buddha and announced that Ronan looked sleepy; or the blond woman who wondered whether he could talk.

            No, this couple meant well. They admired Ronan in what seemed to them an appropriate way: pausing as they walked to their table, cooing at him, admiring his eyelashes, asking, “How old?” They smiled as they sat down and paid us no more mind. Perhaps they sensed something wasn’t right with Ronan; perhaps they didn’t.

            I know this is a regular routine for Emily: the observations and, sometimes, interrogations of well-meaning strangers. With babies, as with dogs and celebrities, people feel entitled to approach. Such interactions, I imagine, are part of the landscape—wrenching and turbulent—of being Ronan’s mom.

            But I’m not Ronan’s mom: I’m a friend, a piece of his world, a piece that comes in and out. And this routine isn’t something I’ve stomached enough to know how to let sit. So I watch that couple happily spoon bites of oatmeal into their mouths and I project my own anger. I project my own longing to know why—to ask (even if they don’t!) those impossible questions—and I find myself hating them for feeling exactly like me.

            Ronan’s life confounds the natural desire to understand. There are no answers to the questions our minds want to ask. We don’t know, can’t know, how he feels now or will tomorrow; why, besides the cruelty of genetics, he has the life he does. Why sometimes his body trembles and shakes and sometimes rests peacefully; whether he hears the songs his father sings to him and how it makes him respond. Ronan can’t give us the kind of sense we seek.

            And I wonder, as I stand above Ronan, grazing my fingers along his calf as Emily warms his bottle in the other room, if this is why he brings me—brings all of us privileged to know him—so much peace. Because we can’t ask the questions we want to ask. We can only be, in the moment, beside him, briefly touching the life he has. 

14 responses to “Guest Blog by Elizabeth Tannen!

  1. what is luluemon?

  2. Thank-you!!

  3. Oh, this is TRUE ly, truly beautifully written. I “see” you, sweet person. Ronan is that presence of peace. Thank you.

  4. Oh Emily this is so beautifully written

  5. Shatteringly beautiful and moving. Thank you.

  6. Oh, yes. So beautiful, so true. I can only add my voice to the chorus. Thank you.

  7. Pingback: Guest Blog For Emily Rapp On Little Seal | Dating In the Odyssey Years

  8. As a parent of a special needs child with similar issues to Ronan but not the same diagnosis, I thank your for sharing this. I am so often wrapped up in how I feel about this that I rarely consider how my family and friends are reacting, and whether or not they are just sad, or angry, or guilty, or worried, or even just emotionless. When I am so wrapped up in myself I can’t think of other people’s reactions, I will re-read this and remember that I am not in a bubble.

  9. Hi Emily this is a song for you, Mama by heintje. I think of you and Ronan all the time:

  10. Hi Emily my name is Amber Nolan and I have a brother that passed away with Tay-Sachs disease in 2001 and I would love to talk to you about him if you would be interested. Tay-sachs is so rare it is almost impossible to find someone that has had a child with it or has even heard of it for that matter. My email address is please feel free to contact me anytime to talk.

  11. Thank you for sharing this. I read you in college, Dr. Tannen.

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