Waking up knowing this much is not the hard part

nor lifting the head from its existential drift

            it’s the sticking of one’s foot off the edge

            lowering it to the cold floor

and finding the correct instrument

to work that crack into a big enough opening

            to venture forward

 Before the fall no story after the fall the old story

After the fires floods along with serpents and bugs

After the floods years of drought

After drought just dusk which is when everything

            really begins to hurt

from “End Thoughts” by C.D. Wright

Today we meet with our physical therapy team for the first time since they began working with us six months ago: an oral therapist, a physical therapist, a speech therapist, a hearing specialist and the program manager who coordinates these services. Rick sits with Ronan in the beanbag chair and I sit next to them braiding Ronan’s wavy, sandy hair, which has grown so long that we discuss cutting it almost every day (“I’ll just cut the back and leave it moppy on top,” Rick says), but never do. I like the way his long curls snake across his forehead, and the way humidity rolls one big fluffy wave over his left eye as if I’d styled it with hair gel and a curling iron.  (The shape of his curls reminds me of what I was shooting for when I spent hours frying my hair with Clairol Hot Sticks in the 80s.) I like to gather curls on top of his head into a floppy ponytail-fountain, the way my mother used to style my hair.

It’s an overcast day, rare for Santa Fe, and as we sit in our small living room discussing different pacifiers and toys that may help stimulate brain activity and increase sensory experience, how to minimize drool (fruit leathers and beef jerky – who knew?) and maintain mouth function, is he still eating and how does he move now if at all and can he still swallow it occurs to me, and obviously not for the first time, that all of these specialists are trained to help develop abilities that Ronan is losing, and rapidly. I feel sleepy and sad, and just as I’m thinking I could use a nap, a chance to just not be awake for this, to be away from this discussion, this reality, this room, this life, I’m thinking mercy, mercy, they ask us about Ronan’s sleep habits, which have changed. “He sleeps on his back now,” we tell them, because it’s uncomfortable for him to wake on his stomach and not be able to lift his head. They are kind, and they have Ronan’s best interests at heart, that’s always been clear, but they are in the business of child development. They speak the language of benchmarks, of strategies that if correctly followed will help lay important groundwork for the future. Ronan coos and sighs, positioned peacefully in Rick’s lap. Our future-less, gorgeous, loved-like-crazy kid. No instruction manual here. Just a daily act of — what exactly? Faith? Hope?

Talking to my friend Monika last night she told me that she’s “wired for hope.” I’m glad I have friends who can be wired that way on my behalf, which I know they are, because I’m not, but I wonder if that’s something I should work on. Not hope that Ronan will be cured, not hope for more children in the future, not even hope for peace with this impossible situation, but hope that I can allow the wheel of every day to turn forward without pushing too hard for change or newness or life or something, on the one hand, or checking out completely and flinging myself down the hole of police procedural dramas on the other. I need hope (but of what ilk? What does it look like? How does it feel?) to go forward through all the moments as Ronan traces the traditional developmental milestones in the opposite direction. Maybe hope is about being fully present (but again, what does that mean?) to Ronan’s regression, which is, in fact, the direction and path of his life. But is that perception or truth? You are not your thoughts, and thoughts are not real my therapist reminds me. True. I can see that with Ronan. He is…Ronan. Little boy. Child of ours. Sweet and sour and soft and stinky baby. He is not a bundle of neuroses or habits, and although his personality is distinct to Rick and to me, to others I know it appears fuzzy, blobby, sleepy. Nobody can quite place his age, many people think he’s a girl, and if they watch him in a coffee shop they’ll notice that his hands stay positioned on top of his stuffed dragon, he doesn’t cry or complain, and every once in a while he may express himself with a sigh or a hoot. I thought I would care about people’s perceptions, their opinions. I don’t. Not at all, in fact, which is liberating in some bleak but wholesome way. I jabber to him while I drink my latte and read the newspaper and hold his hand and get up in his face to kiss him.

After Team Ronan leaves, I put Ronan down for a nap and lie on the couch in the quiet living room, listening to the rain drumming against the roof, growing stronger and steadier and then almost deafening. I think about the walk we took through the mountain aspens on Sunday afternoon, those coins of solid yellow light falling back and forth through the breeze, the creek running down the hill, the camper who suggested that Ronan’s feet were cold and that he needed socks. I can’t sleep if my feet are cold, she cautioned. And he looks like he wants to sleep.

Off the mountain, the chamisa is blooming, spiky bushes with pollen-soft pom-poms that float through the air along the arroyo path – Ronan’s Path, as my friend Kate has named it – and make everyone sneeze. Even with these spring-ish blooms I’m thinking of winter, and the way I’m training to ski this year, actually get on the slopes instead of just talk about it, and I’m remembering the coach who taught me how to ski. How tough he was during the lesson, screaming at me during turns, shouting at me about being too slow, and then how soft and gracious and encouraging at the end of the run, his gloved hand help up for a high-five that I was often almost too exhausted to reach for. He’d had a beloved student early in his career – Retta – who had lost a leg to cancer in her teens, gone into remission, and then died in her early 20s when the cancer returned. He named one of the most difficult runs for her: a narrow chute of shaded ice and spiky moguls. I loved skiing that run – the sheer challenge of it, the heave and muscle required by the body to reach the end. I loved thinking about Retta as my thighs burned and my heart strained against my ribs, thinking about every other body that had skied down this run remembering Retta’s body, her life, even if they’d never met her. Retta’s Run. Ronan’s Path. We all tread heavily on the earth, even if our feet never touch down.

At his last pediatrician appointment Ronan had lost a pound and grown an inch. His eyes didn’t respond much to the doctor’s little pen light. In the morning, when we notch ourselves onto the mini-couch and I lie Ronan on his side to face me, he’ll often smile but his eyes are moving quickly, too quickly, watery, or as if they’re tracking the quick gush of water across glass. The rain gets heavier in the afternoon, and I think about the dream I had last night. I was in Russia, inexplicably, trying to find a bed for Ronan, just a space to set him down so he could sleep. I kept running from bathroom to bedroom, but the spigot in the bathroom kept soaking me through, making me too heavy to run, to search. And then, suddenly, I was alone on a cart, Ronan-less, passing a church in the desert (?) near a rural Russian city (with a make believe name I can’t remember, but it started with a Z), passing churches where children were playing, their hair fluttering up like dark flags as they jumped up and down and I said to my cart mate, a woman with her head and half of her face covered, I know them.

We told Team Ronan that we think his vision is best just after the sun has slipped from view, in those last few minutes between day and night when the light narrows and Ronan’s path is like a dark, ambling river, peaceful and running strong. When I tip Ronan’s head back a change comes over his face, as if at the end of some lit corridor he has identified something he recognizes. Mercy, mercy. What is a merciful heart? An unquiet one, a broken one, a faithful one? All three? How do you know when you’ve reached the benchmark of hope within sadness, along a senseless path, a hope that will see you through? When you can see beauty and brutality in a single stroke, when you can relax into the soft moment but feel within it the tip of the hidden blade?

12 responses to “Benchmarks

  1. emily, this is simply beautiful i’ve been reading along. my heart goes out to you and i’m moved by your journey. but i’m also so impressed with your ability to write it all down in a way that includes us all. thank you.

  2. Bonnie Schwartz

    Beautiful post. Thank you for it.

  3. You’ve found an intense and agonizing moment, the one where you see beauty and brutality in a single stroke. Thank you for it — I need to think about it too…

  4. Thinking of you and Ronan… Much much love and hugs…

  5. “We all tread heavily on the earth, even if our feet never touch down.” Absolutely, Emily. ❤

  6. You were in Zagorsk (I say), where the babushkas have long recited your final lines: “How do you know when you’ve reached the benchmark of hope within sadness, along a senseless path, a hope that will see you through? When you can see beauty and brutality in a single stroke, or when you can relax into the soft moment but feel within it the tip of the blade?”

    What drew me to Russia but its joy in sorrow, its laughter through tears?

    And the hope I think you might win is for your Self, a new, a different one, maybe akin to a babushka’s. I hope.

  7. I was about to post that I think you were in Zagorsk. I see Lew (across the desk from me) just had the same thought about that tender place of sky-blue cupolas with silver stars, tended gardens, gentle silence on the grounds, and the voices of angels inside the medieval stone churches which are lit only by candlelight. People (mostly women) move in and out of the sacred space with ease. It’s all very natural, integrated into their lives. Love you.

  8. As Brett Paeel said so well–your writing includes us all in this journey. In our busy day to day life, it is convenient not to contemplate or bring to words the ultimate questions of our real selves, the deep realities of loss (or the possibility of loss), and the short or long roads ahead. You do this every day even if you wish you did not have to. “When you can see beauty and brutality in a single stroke, when you can relax into the soft moment but feel within it the tip of the hidden blade?” Powerfully written, your journey takes us all along with you. Love to you, Rick, and YOUR sweet child.

  9. Your blog made me think about a possible book title ‘The Spirituality of Facing Hopelessness.’ i think it is great that others can hold hope for you when you are just not there. And I also think there is an immense pressure in this society to be positive. The shadow side of the New Age Movement is the resistance to feeling the so called ‘negative feelings’. Facing hopelessness is pretty terrifying but simply a part of life. I love the honesty of your writing.

  10. Ceilidh Yurenka

    I am sitting at my computer desk, finding it difficult to swallow, the general area where my heart is in my chest feels constricted and tight. But I am healthy. So is my son, who is the same age as your son, and the same age as my dear friend’s daughter, who also has tay-sachs. This is just so incredibly painful, and I cry for my friend and her daughter now, and I cry for you and your son. I cry and I hurt and I am just SO SORRY and SO MAD and SO CONFUSED about how all this is. I send your family blessings. And love.

  11. Emily, I’m just starting to make my way through your blog, after reading your NYTimes article. I feel so thankful to have ‘met’ someone like you who is able to put the beauty and horror of what you are experiencing into words. I am also impressed by how the blog medium creates a unique experience for us, your audience, that combines unspeakable real-time heartache with the timeless appreciation for your exquisite words. Sending every bit of hope–though I have no idea what that is either–your way. I hope many others find their way here to these words.

  12. I’m reading this while I sit at a place called Sanders’ Point at an Trinity Center, in Salter Path, NC. This ground is holy, as is the ground you, Rick and Ronan are treading. I don’t know any of you, but since reading the NY Times areticle last Sunday, I cannot stop praying for you all. And when I don’t have words for prayer, I cry. As I read this post, I sobbed.
    The Scripture we read this morning at my conference was from 1 Corinthians 13. “Faith, hope, and love remain. And the greatest of these is love.” Thank you for helping me to understand more deeply what true love really is. As I pray for comfort and peace for the three of you, I will add a prayer of Thanksgiving for the example of love that are showing so many others.

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