Blessed Are the Caretakers of the Dream of God

First, two definitions:

Macarism: Greek. Noun. A compelling proclamation that expresses a blessing. An exhortation to live a particular way. A congratulation to specific persons in specific conditions.

Makarioi: Greek. Adjective, plural. Wise. True. Whole. Flourishing

Then, Micha Boyett’s rendering of the beatitudes, makarioi at the start of each statement:

“Makarioi are the weak ones, the poor in wealth and the poor in soul,” she writes. “They are caretakers of the dream of God.”

And so on, throughout the entire passage.

So begins Boyett’s new release, Blessed Are the Rest of Us. A tender, honest look at motherhood, disability, and theology, the book invites readers to consider what it means to be blessed — not according to cultural standards, but according to God. Boyett is a mother of three boys, August, Brooks, and Ace, the latter of whom was born with Down syndrome and later diagnosed with autism as well. Boyett’s intimate experience with how vulnerability can show up in our minds, hearts, and bodies shapes her storytelling and guides her perspective on the beatitudes and the beautiful community of the people of God. 

Boyett spoke with Common Good about what draws her to Jesus’ words in Matthew, how vulnerability and struggle link in her family life, and what it means to cultivate an inclusive imagination.

The beatitudes serve as the lens for the story of welcoming Ace — and perhaps a new way of seeing the world — into your family, with all of its wild joys and deep griefs. What is it about that passage that kept calling you back to it? 

The priest and author Gregory Boyle wrote that the beatitudes are “more a geography than a spirituality. They tell us where to stand.” When I think about what led me to the beatitudes after Ace’s birth, I think it was this idea (though I didn’t have Boyle’s words yet). 

I received a prenatal diagnosis that my baby would have Down syndrome when I was five months pregnant with Ace, and in the book I write about the season of grief that came with that diagnosis. Once Ace was born, my grief transformed to protection. The world around me wasn’t subtle in their opinions about Ace’s disability, which he wore on his face: stares everywhere we went, sometimes outward disgust, or often over the top praise, which felt like a cover for discomfort. 

I held this deep need to protect Ace and my family, and as a writer and feeler, I needed to find my way to language about what I was experiencing and how I would to understand my role in advocating for Ace’s value. I didn’t arrive at the beatitudes because I was searching for something in Scripture to hold onto. I think it just began to come to me organically. I’ve always found my life in Jesus’ teachings, and the words of the beatitudes began to arrive in my mind as I moved through the world: Seeing Ace as meek, and recognizing that my longing for the world to receive him as a full and valuable human being was me living out Jesus’ blessing for those who hunger and thirst for justice and rightness on earth. 

So I started to spend time with the whole teaching because I wanted to know what Jesus meant when he was offering blessing to Ace in his meekness, his lack of power, or to me in my longing. And that idea of Gregory Boyle’s, that the beatitudes are an invitation to stand in the space of those who have limits and longings — which is to say, all of us — offered a path for me and for Ace. 

My younger son has physical differences that required great amounts of my attention early in his life, so I related deeply to your fear that Brooks would believe his value came from keeping everyone okay since August and Ace needed you in specific and complex ways. As your children have gotten older, how have you continued to work through that concern?

One gift of being my older sons’ youth pastor is that I have built in designated, meaningful time with them twice a week, without Ace. We commute to our church so there’s a lot of car time as well, where Brooks and I listen to our favorite podcasts together, and August introduces us to his new favorite bands. 

Both my older boys need my full attention — time and conversations outside of our regular family when Ace’s needs can be pretty demanding. So at nights when Ace has gone to bed, or when we’re traveling back and forth to youth group, I’ve tried to keep that conversation open and push myself even when it’s uncomfortable so I don’t shy away from asking them the big questions.

The other day, when I was trying to have a hard conversation, one of my older boys said, “Mom, I really don’t want to have serious, soft-voice Mom time right now,” which made me laugh so hard. Fair enough.

How has parenting a child with Down syndrome and autism helped you understand the ways that love and suffering operate as, in your words, “cohabitating companions?” 

I think Ace’s life and needs have just given me a visual for the vulnerability that is required of love. It’s something we all have the opportunity to learn at some point if we’re paying attention to the world, but I got to learn it sooner. 

My dad passed away two years ago from brain cancer. And he was in so much pain. It’s a terrible disease. Toward the end when he could no longer speak and needed help getting around, I remember feeling especially equipped to love him. Ace had already taught me how to understand my dad’s needs without language. How to be tender with him. Love and suffering. We can’t give ourselves away to love without making ourselves vulnerable to loss.

Maybe that’s a wisdom that comes only to those who have experienced suffering or grief, but it’s always true. That’s why our hearts break when relationships end. Love makes us vulnerable and that vulnerability is the only way to truly support and care for another person. Love demands a kind of suffering every time. 

Many of Common Good’s readers are faith and community leaders. How would you encourage them to foster greater disability inclusion in their ministries?

There’s a narrative in the church that to foster disability inclusion you have to create a program that reaches directly to disabled people. And it’s great for some churches to do that, but I also think it reveals a limited imagination. When I talk to Ace’s teachers and staff members at his school about what inclusion looks like, I use language I’ve received from other advocates in the Down syndrome community: particularly access and opportunity. For my son to receive an inclusive education, he requires access and opportunity. In Ace’s classroom that looks like accommodations to allow him to learn his own curriculum alongside his peers. It means Ace needs help accessing the classroom in a way that meets his sensory needs. It means he needs a one-on-one aide who can help him communicate and engage with the community.

Making church available to everyone regardless of ability is no different. Does everyone have access to the building? Are people with behavioral differences wanted in the service? Is there opportunity for disabled folks to engage with the community and lead? These are the questions to start with. 

Andrew Draper has written a book about these ideas called Disabling Leadership: A Practical Theology for the Broken Body of Christ. I recommend Amy Julia Becker’s interview with him on her podcast Reimagining The Good Life. 

You describe Ace’s presence as propelling your family “toward the kind of vulnerability that only arrives alongside struggle.” What does that vulnerability look like from day to day?

Ace is non-speaking and while he works daily to use an ipad device to relay his wants and needs and desires, he still has a long way to go in being able to share more about his feelings than sad or mad or happy. This can’t help but play out in relationships. At home we can read his facial responses and his body language, but he longs for friendship, and I know he’ll need friends more and more as he grows. He has a sweet community of kids around him at school, but his challenges to engage means that most of his relationships with peers consists of high fives and side-by-side play. 

Not being able to express himself at this point is a kind of vulnerability we all hold with him. Everyone in my family has sat with him when he cried, not knowing how to help. Or tried to calm him down in the middle of the night when he was out of sorts, not knowing if he’d had a bad dream or too much sugar. 

It’s a vulnerability we all share, even his older brothers. We love him and we want to know him and in that struggle, we are learning to be gentle and compassionate and aware of all that Ace might be holding. And when Ace receives that from us, I think he offers that back to his world: compassion, gentleness, believing that there is always more going on under the surface. This is how Ace lives his life as well. 

I couldn’t stop nodding along as I read your thoughts on Jesus inviting his listeners into a “transformative kind of antiefficiency,” which Ace’s very essence also evokes. How has your life with Ace shifted your perspective on time, productivity, and rest?

My weekly newsletter and podcast focuses on this idea of antiefficiency. It’s called The Slow Way as a hat tip to my son’s way of going through the world and how he’s transformed my life.. “Slow” carries a negative connotation in our culture, where capitalism has taught us to value speed, success, and power above all else. But that’s not what Jesus taught. He always pointed his followers to the weakest, the least impressive, and he always moved at a pace that allowed him to notice the need around him. 

The essayist Brian Doyle wrote about how we’re all given around two billion heartbeats in our lives. The hummingbird uses those up in two years. The turtle can use them in 150 years. I want to live like a turtle.

 

This interview has been edited for clarity. Blessed Are the Rest of Us was made available in April 2024, from Brazos Press.