There is something maddeningly attractive about the untranslatable, about a word that goes silent in transit.
-Anne Carson, from “Variations on the Right to Remain Silent”
Today Ronan is wearing his Thera-Tog, the “super suit” that is designed to help him maintain better trunk control. It noticeably improves his posture, but as is the case with all the therapy we do with and for him, it’s not about improving anything. There are no expectations attached to what we do. We’ve had to tilt his high chair back a bit, the bouncer is now padded on all sides and he needs shelving paper underneath his feet to keep them from splaying out. In general, he seems to be much happier on his back, with stuffed animals propped beneath his elbows, or his legs elevated and stretched out over the boppy pillow.
“It’s good for him to be able to hit things or change things with his body in space,” the physical therapist tells me. She shows me how to press his butt into my belly, wrap one arm beneath his knees and the other across his chest to help him stand. I can tell Ronan likes this; he squeals and smiles. This is like a first step, I think, and although there won’t be a second solo step, there will be nothing apart from this assisted standing, we clap and cheer anyway. I wonder how it feels to him, these movements and this praise, inside his very uncomplicated brain that has made everything about his body so complicated, the quality and nature of his experience of the world impossible to translate. Our brains simply cannot manage the great simplicity of his outlook. I wonder if this is why people have such a strong reaction to Ronan, why they unaccountably and often to their great surprise, fall in love with him so quickly, so fully. Is it his great silence, his great calm (even when he’s snickety), his great peace? I’d give anything for him to be running around right now, screaming and wailing and testing limits and our patience, trying to stick a fork in a socket or something, but that he’s perfectly content is inarguable. The illogic of this makes my own brain spin on its normally developed stem.
“Do you think he senses this new orientation?” I ask, feeling his weight against me. “Oh, yes,” she says. “You can see it in his face.” She reminds me to gently shift him over my forearms in order to release him to the floor. “We don’t stand straight up out of a chair,” she says, sitting on the couch and then leaning over before standing up, demonstrating the way most of us pitch slightly forward without thinking. Our bodies know what to do. They just go and go in space, sitting and standing and reaching and pushing and pulling, with the brain and the cortexes and lobes and whatever else all following suit. Ronan’s does not. We have to coach him. We do for him things that his brain cannot master on his behalf, although that’s not exactly right, either.
When lay him on a blanket and let him rest in a side-lying position and then roll him back and forth from side to side, as if he’s lying in a hammock, singing row row row your boat, gently down the stream, merrily merrily merrily merrily, life is but a dream, he moves his foot slightly forward, all on his own, all systems firing together for that one second. “You did that!” the physical therapist coos, and Ronan smiles at her, showing all eight teeth. When I lie nose to nose with him, he reaches out for my face, my lips, the edges of my hair. “He still wants to be able to do things, make changes with his body and see the reactions he makes, the ripples,” she says. She massages him with a vibrating personal massager; a search for a similar device on the internet turns up a list of less savory alternatives, even when we type in “sensory integration disorder therapy tools,” and has the therapist and I giggling like junior high school girls.
“The vibrations speak to his bones,” she tells me, pressing the vibrating tool flat to his heels. “Uh-huh,” I say, thinking this sounds a bit new-agey, but there’s no doubt that Ronan is enjoying himself. Ronan was exhausted after all this movement, minimal as it might seem to anyone viewing this scene from the outside. But moving a foot on his own, just a centimeter, matters to him, batting at the chimes of his dragon toy matters to him, even if it’s just a fingertip grazing the edge of a dragon-y foot, and so all of these movements matter to me, all of his likes and dislikes, all of his abilities and limitations. When our friend Carole was here this weekend to take us to the opera, she realized that Ronan liked it when she ran a finger from his forehead (complete with Harry Potter-esque magical lightning mark) down his nose as she does with her cats. “You’re a kitty,” I tell him, and he makes his dragon/purring noise. I want to record that noise in order to remember it when Ronan is gone, but there’s no way I will. I’d never be able to listen to it or else I’d never be able to stop. Next we’ll try rocking him in the hammock. Next week the therapist will bring distilled essential oils to stimulate smell, one of the last senses to disappear. I’ve started waving lavender and lemon under his nose and sometimes adding both to his water. Yesterday I mashed fresh mint into his peas. There might not be a next year, but there’s a next day, a next week. For now it needs to be enough.
After my recent allergy attack, the doctors warned me about “rebounding.” Careful for a rebound! they intoned as they scribbled out a prescription. I took steroids for a week and Benadryl at night, maintaining a general spirit of watchfulness. In most cases, the source of an allergic reaction is never fully determined, so I’m back to dragging around an Epi-Pen wherever I go. Oh, the body and all its mysteries, all its myriad ways of going wrong, of failing, which of course in the end (as in the literal end), it is designed to do. Who and what are we? I often think when I sit next to Ronan, or watch him happily staring at me, at his hand, at a toy I present for his in-the-moment amusement. What are our lives about, or for?
When I was in the ER in Colorado Spring after the allergy attack, Ronan sitting on the bed, the nurse prepping my veins for the IV, I thought what if Ronan outlives me? Doubtful that this will happen, of course, but then, anything is possible. None of us knows if there’s something in us that will kill us today or tomorrow or next year, or if next week’s trip to the grocery store might be the last one we take. Rebounds are around every corner, for all of us, even if we think we’re immune, even if we call ourselves lucky, even if we think we’re smart enough to avoid disaster, as if intelligence helps in any way at all.
Tell me what I am, and who you were, Griselda’s piece-of-crap husband asks her in the opera named for this woman who was outcast, tested, abused, and above all, loyal. Rebound after terrible rebound — that was her fate, her life, her task. Good old opera. Two nights in a row, and the histrionics and wild arias demanding that the shadows recede and that the suffering stop ring more true than I’d like them to, even if the set of Griselda looked like a mini-golf course with Goya paintings leering in the background. I remembered singing those arias in the soundproof rooms at St. Olaf, when I desperately wanted to be a diva. I dreamed of a flowing gown and a tiara and a thick waist. I imagined writhing on the floor and pushing my hands to the sky while maintaining clear pitch and a stunning vibrato. Alas, this soprano became an alto during the first year of freshman year, so those hopes were dashed. But I can still appreciate a good Vivaldi flourish though, and there were times in the opera last night where I could practically see the notes floating out of the back of the singers’ heads.
Who do you say that I am? This is a question that is asked often in operatic arias, interactions and plots. It’s also asked in The Odyssey, which Rick and I listened to last week for about one hour on the drive from Wyoming back to Santa Fe before we decided to switch to another audio book. It’s a question that Jesus asks in the Bible, it’s a question we’d been asking ourselves a lot on our brief weekend vacation in Estes Park.
In the crucible of grief (and of life, too, although grief is basically life intensified), who you are changes from moment to moment. Yes, as Gail Caldwell says in her book about loss of her beloved friend, the writer Caroline Knapp, “grief is who you are when you’re alone,” but it’s also who you are when you’re together. Me and Rick. (Parents who will outlive their child). Or who you aren’t. (Parents of a healthy child) Or who you might be in the future. (Parents again? Or parents of a dead child?)
Who are we? Ronan stayed with his grandparents in weirdly hot and humid Cheyenne and Rick and I spent two nights in Estes Park at Workshire Lodge, a collection of modest cabins near a stream where we used to stay when I was a child, less than a mile from the entrance to Rocky Mountain National Park. It’s hard for Rick and me to be away from Ronan, sometimes it’s hard to be alone together. What can we talk about except what’s coming? And we don’t even know what’s coming, but we do know there will be that final moment, and then the next moment – the one I dread most – after that final one, and then all the moments after that, stretching on to the end of our lives. I don’t tell Rick this; instead I ask if he wants to hike Chasm Lake, Sky Pond, or Dream Lake. None of these sound appealing; even their names are too full of story, too overwhelmed with meaning, too full, overflowing, too ripe for translation and interpretation. We decide on Twin Sisters – a trail that climbs straight up through several thousand feet to windswept and panoramic views of the mountains. We watch a family of bighorn sheep scramble up on one of the rocky outcroppings. We eat our sandwiches in silence. There are 350 trails in Estes Park, and for a moment as we’re heading out I imagine writing a book called A Moveable Grief. I’ll move to Estes in a camper van and hike all of those trails after Ronan is dead, day after day, my own little depressing stunt memoir. I thankfully chuck that idea on the way down, and almost laugh out loud thinking about it.
Ronan’s life, and our experience of it, often feels untranslatable, and for that reason, the loss is that much more acute. We ache all the more. Sadness like a rock that drops and drops and drops and never reaches the bottom of the well or touches the cold stone sides.
Ronan, who are you?
In Homer’s epic we have cloud-gathering Zeus; earth-shaking Poseidon; clear-eyed Athena – everyone gets an adjective. I try to think of one for Ronan. Chubby butt Ronan; peaceful-heart Ronan; mind-boggling-zen-baby Ronan. Nothing fits. They all sound like riddles or jokes. He’s just Ronan. Ronan Louis. Baby. Beloved. Son. Ours. And something else, too, that has and needs no name. He embodies some ineffable quality that is literally lost in translation, off scene, on the sidelines, but planted in our hearts, mysterious and tremendous and true.