Hi friends,
Today I’m sharing something a little different, but no less important. Back in March, just as I was beginning to walk again, my family traveled to Florida for a vacation at Disney World. The trip had been planned for a year, and for most of that year, I didn’t think I’d be well enough to go. I was five days into walking again, fresh out of two weeks fighting the flu, and only beginning to regain energy and vitality after about ten months in bed. It was like waking from a living nightmare—to stand on my own two feet again, to laugh again, and, to experience being included as I was in that moment.
While the rest of my family walked around Disney, I scooted around in a chair and stood with the help of a cane. And each morning in bed, each evening soaking my painful joints in a bath, and even during the lull of bus rides, I couldn’t stop reading
’s words in her new book, Blessed Are the Rest of Us. For years, I’ve struggled to resonate with most books put out under the category of “Christian Living” or “Christian Spiritual Growth,” but in the last year, the language found in most of those books became more than lackluster to me. It became meaningless. Someday, I should, and I hope, to tell you more about that, and how speaking the language of spirituality is shifting yet again for me in sometimes disorienting yet essential ways. But what I want you to know today is that Micha’s book met me with words that did not feel empty but, rather, expansive.As I wheeled around Disney World, feeling so aware of my dynamic disability and so glad to be easing back into the world in a unique place where people like me are not passing thoughts or inconveniences but valued, included persons, I couldn’t stop thinking about Micha’s words and the mystery of a kingdom where love reigns. As Micha writes:
Jesus used the word kingdom because that’s how his listeners understood reality. If their safety, health, and sustenance were controlled by whatever empire reigned, then he wanted them to imagine a world where a divine love was in charge, where every part of their lives pulsed around that love, even as their hardscrabble daily existence was dictated by violence and oppression…
What Jesus calls the kingdom of God is the dream that exists in the imagination of the divine. It’s the intention of God, the original hope for creation, and the ultimate reality for those of us willing to move our imaginations and intentions toward justice, peace, and inclusion, with the help of a divine love that propels us forward.
—p. 25-27
I have a feeling many of you feel similarly to me about Christian books,1 but maybe, like me, you are also still longing for conversation partners whose beating, broken hearts tune ours to something truer and realer than trying to rise above being fully human. I hope that in
’s words you can imagine again the possibility that you are fully worthy of love.—KJ
Excerpts from Blessed Are The Rest of Us: How Limits and Longing Make Us Whole
Chapter 4, “For the Ones Who Long for Justice”
July 2015 (Ace, Three Months Old)
Connecticut
“Mama,” August whispers. “I want you to pray for Ace.”
“Okay.” I lay his brother down inside the crib. “What do you want me to pray for?”
“I’m worried about his dreams,” he says, looking down from his perch over the pack ‘n play. “I just don’t want him to have a bad dream. And I’m worried he’ll have a good dream, then he might be sad when he wakes up and it isn’t real.”
“That makes sense,” I say. “But maybe he’ll have a good dream and he’ll wake up and it is real. Maybe he’ll dream about being at Grampa’s house with his big brothers, and Mommy wrapping him up tight, and us singing a song to him.”
August looks at me like I definitely don’t understand how dreams work. He has suffered from nightmares since he was two years old. He still talks about the very scary walrus that entered his closet that year. “Maybe,” he says skeptically. He stands, thinking for a beat.
“And pray for his Down sin drum.”
I’m surprised, and turn from my spot beside the travel crib to look at the little boy beside me.
“What should I pray for his Down syndrome, buddy?”
“Pray that it won’t hurt him.”
I take a breath in, feeling the weight of those words. When Ace was born thirteen weeks ago, Chris and I weren’t sure how to tell our boys about Down syndrome. They’d never known anyone with the condition. How could they understand what it would mean for their baby brother, what it would mean for their lives? When we were given Ace’s prenatal diagnosis, I wept first for them, for the responsibilities they’d have to hold, for the challenges they had never asked for. Would they have the kind of supportive loving relationship with Ace that Chris and I have with our siblings? How would it feel to hear some kid in their class make fun of their little brother? Will one of them feel pressure to care for their brother when Chris and I one day couldn’t?
In those early weeks, when other parents at August’s school would ask about how Ace was doing as I walked my second grader into class, August would tug on my sleeve, excited: “Mom, tell them about the Down sin drum!” Something was wonderful and important about his brother.
Ten days after Ace was born, I took him for his second EKG, performed this time outside of my body. I held all six pounds of him as cardiologists strapped electrodes to his tiny chest, his bare body cold and wiggling on the exam table. I held his hands, stroked his legs, and stared at the computer screen beside the table, praying his heart would work, that he wouldn’t be among the fifty percent of people with Down syndrome born with conditions that require open heart surgery. But soon I moved from fear to wonder: I was seeing inside him, and on the screen his heart looked like a magic forest, the fluttering tree of his atriums and ventricles swaying from side to side. I heard myself laugh. He was alive.
When August asks me to pray for Ace’s Down syndrome, I wonder what he means. Of course, I can list all the medical fears, everything that can go wrong in a body with one extra copy of the 21st chromosome, every cell in every part of his body marked by this excess. And then I think of my one lucky egg that formed him, the chance that this one survived all of the eggs, all the months of my life. That this child would have been the one my body made. Like all of us, tender, original, miraculous.
What am I afraid of? I look at August, who has leaned over the travel crib, his hand gently pressed against Ace’s swaddled belly. Pray that it won’t hurt him.
I know that, despite all the medical fears, despite the struggle of those first few weeks to get him strong enough to latch on and breastfeed, despite concerns over his weight gain and calorie intake in these first few months, a challenge that will continue through all the early years of his life. The thing I most fear is not Ace’s bad dreams; it’s his real life. The life he’ll have outside of our family. The life he’ll have at school, in his community, in his eventual workplace. The life he’ll have in a world that doesn’t believe his value.
“God,” I pray, “help Ace have a cozy nap. Help him feel all our love and know that he belongs to our family.” August squeezes my hand and looks up at me. “And we pray for his Down syndrome. That it won’t hurt him.”
. . .
Whole and flourishing are you who are hungry to see the world made right, those of you who thirst for right-relationship and wisdom. There is a connection between hunger and holiness, between longing and feeding, between a yearning to see the world made right and the courage that strives for justice. To move toward beloved community, we must first recognize how often we instinctively rely on systems mammon, what author Andy Crouch describes as “not simply money but the anti-God impetus that finds its power in money,” instead of making the difficult choice to live and work for the common good. . .
Jesus was giving his followers a way out of the monster’s control. The wise and fully-alive people, Jesus spoke to his listeners on the hill, are the ones who choose to be hungry, not for the false power and twisted influence of mammon’s dominion in the world, but for an ecosystem of wholeness. To hunger and thirst for a world where every human is treated with equity is to live in a constant in-between. The reason living outside of the influence of mammon’s power is uncomfortable is that the burden of longing “hungering and thirsting for change in the systems of power”is never complete. Injustice never sleeps and neither can our longing for goodness. . . We are all invited to flourish in the ordinary, mutually dependent way of Jesus. . .
Author and Episcopal priest Stephanie Spellers says that though beloved community is still only a dream for us, “for God, it’s reality.” It takes faith to move toward God’s dream, and it begins by freeing ourselves from the hold of mammon in our lives, recognizing that we can only flourish when our spirits are whole enough to see the wholeness of the other.
. . .
After August and I pray for Ace in the pack n play at my father in law’s house, I take a walk around the block, listening to a podcast interview with a musician whose daughter was born with Down syndrome just a year ago. She’s reflecting on her fear, her grief, and the ways her sorrow has turned to joy in this first year of her child’s life. As I listen I sense that I am afraid not because of my baby’s diagnosis but because of how the world sees it. I stay with that thought for a bit, then ask myself a question that will remain with me, challenging me to wrestle with and expand my answers for years to come: What makes us human?
In the past, I might have pointed to our ability to think critically, to problem solve. Or maybe humanity requires a human body—two arms, two legs, ten toes. Am I human because I am conscious? Am I human because I can speak? What will I believe about Ace’s humanity if he never speaks, never thinks critically or problem solves? Who determines his humanity?
I walk past the manicured Connecticut lawns and the two-hundred-year-old stone church, then turn the corner, where the cars wait anxiously for the light to change. How will I define my child’s worth in a world that demands proof of his value?
I’ll come to recognize the answer in the concept of personhood. We are valuable because we are. Eventually, I’ll think about Jesus’s promise of flourishing to the ones who hunger for justice”that they will find themselves filled all the way to overflowing”and I’ll wonder if that filling is actually the gift of love, the gift of worth and value, the gift of mutually dependent relationships.
“What made you decide to keep him?” an acquaintance asked me eight weeks prior. We were in the school courtyard at drop-off. Our boys, buddies from school, shot imaginary slime at each other and ran past us toward their second-grade line. Ace was asleep on my chest, wrapped in the stretchy, handmade Moby wrap my sister-in-law had sent me. We were standing side by side, the foggy gray sky thick around us.
He might as well have asked, “What made you decide his life was worthy of existence? What made you decide his incomplete humanity deserved your time and mothering?”
I was astonished at first. Who would ask this of a new mom? And then, as I began to experience moving through the world with my son, his face touched by Down syndrome, on full display to strangers, I realized that many people find this question acceptable, even necessary. We’ve been trained to value our own worth based on what we produce, how we perform in our studies or careers, the sign of having raised good humans often determined by how they are “contributing” to culture or to the economy. When a person fails to produce, perform, or contribute, they become a drain on society, the money sign above their head flashes. This is an unspoken reality, something we rarely give voice to, except in jokes about the stupid, the lazy, or the ones who ride the “short bus,” accepting as reality that those who drain resources are less human than the rest of us. All of us who have lived subject to mammon have been trained to question the humanity of my son, even if we’re too polite to say so out loud.
Why did you keep him? On the school blacktop, my newborn wrapped against my body, my answer was weaker than I wanted it to be. “We wanted him,” I said, my hand resting on his bottom, where his legs curled under him in the same fetal position he had held for nine months. My body was suddenly on high alert, protecting his right to exist. The rest of my words stuck in my throat. I wanted my baby. This is my baby.
Now, as I walk the neighborhood, knowing that back at my father-in-law’s house Chris and our two older boys are splashing in the pool while Ace sleeps in the dark afternoon shade of the guest bedroom, I have yet to make sense of this new world I’ve joined. I don’t have language for what it might mean to live in an economy of wholeness, where there is enough to go around—enough sustenance, enough opportunity, enough value. A world in which those who hunger and thirst for food and drink and those who choose, in solidarity with the suffering, to hunger and thirst for righteousness, will be filled and overflowing.
It will take me years to come to Jesus’s words and find my son inside them, to recognize that Jesus has always been inviting us to remake culture in a way that centers the personhood of all: of the weak and rejected, of all who are subject to impoverished conditions, ableism, racism, and sexual-orientation and gender-based discrimination. These are blessed, not by any false religious artifice but by a sturdy wholeness, a label of dignity from a God who does not distinguish our value based on the system of mammon. Those who deserve justice are flourishing because in God’s dream they are the ones who show us the way of mutual dependence, a way in which relationship is never power based, a whole and life-giving way of needing one another.
Ace, I will learn, will not be hurt by his Down syndrome. He’ll be hurt by the way our culture encounters, judges, and pities his Down syndrome. But in the flourishing life, the life Jesus invites his listeners to receive on the hill that day near the Sea of Galilee, the ones rejected by society become the gifts, the ones whose very lives free us from the burden to keep up with the culture of power, money, and success.
It turns out that “keeping him” will rescue me from the accomplishment culture I was born into. Ace’s life invites me to reject my desires for power, my need for accomplishment, so that the really real can begin to heal my dangerous perceptions around value, inviting me to a bigger longing, a kind of justice in which we are all restored to dignity and the wholeness that is the dream of God.
Please tell us below how this excerpt resonated with you! And, do feel welcome to share any and all qualms and medium-hot-takes you have about the dismal state of christian publishing if you are feeling spicy. 😉 ALSO, if you’ve read something that lit your heart up like Micha’s book lit up mine, tell us!
So as to not be a biatch, you should know I have enjoyed other books from Christians this year. 🙃 Here’s a short list of other recent books that have been meaningful to me spiritually (some are a little more heavy on the Christian language than I would have preferred, others are not, and no I won’t tell you which): Sarah Bessey’s Field Notes for the Wilderness, Jay Hulme’s collection of poetry The Vanishing Song, Shannon K. Evans’ soon-to-be-released The Mystics Would Like a Word, hospital chaplain J.S. Park’s As Long As You Need: Permission to Grieve, Jonathan Merritt’s deep well of a children’s book My Guncle and Me, and therapist Christy Angelle Bauman’s Her Rites: A Sacred Journey for the Mind, Body, and Soul. And next month I’ll be sharing with you from a memoir I adored, from Lisa-Jo Baker, It Wasn’t Roaring, It Was Weeping.
This makes me think of the earliest Christians who were known for retrieving the babies no one wanted to keep from literal trash heaps and how upside down their love was to their neighbors. May we also have a reputation for such unusual love.
A recent beautiful read for me was We Shall All Be Changed: How Facing Death With Loved Ones Transforms Us by Whitney Pipkin.
Wow. This is beautiful. Like you my spiritual language and landscape is morphing. It’s exciting, unnerving, and taking me to wide open spaces I’ve yet to explore. Turning in my final edits today on a book about all this - about what to do when we get to the crossroads of faith and doubt - and I’m fearful it’s not fully capturing this new sense of freedom but having to trust it will land where it’s meant to.
Grateful for you KJ and for this beautiful book.