Living on a Prayer

The road to Antelope, Oregon bears none of the trademarks of a pilgrimage route. No medieval cobblestones, no holy wells. No cairns or crosses or signposts inscribed with prayer. Instead, Route 293 winds through an unmarked landscape that’s more like a cross between the most desolate Star Wars planet and the set of a cheap Western film. High desert crags and plateaus the color of cardboard. Lonely fences draped in thick dust. Here and there a skinny cow, chewing on bone-dry scraggy sagebrush, blinks in weary bemusement at passing cars. The road itself—a potholed, dust-blown two-lane highway—connects the mountains of Central Oregon to towns everybody forgets about: Maupin, Fossil, Antelope, the lost reaches of the Eastern edge of the state. Yet at approximately 8:53 pm on a July evening, I stood in the middle of that road, knelt in the dust of the center lane, and praised God. I leapt. I danced. I sang.

My road to Antelope began far before Mile Post 1. It all started with Aaron. Aaron is my younger brother, eighteen years old. Aaron has autism. He can’t read or write or tie his shoes. When he talks, it’s in a dialect of three-word sentences we’ve dubbed Aaron-language. My parents and I are his only interpreters. At his best, Aaron is the definition of pure and infectious joy. A strawberry milkshake, a baseball game, or a rousing rendition of We Wish You A Merry Christmas (even better if it’s the middle of July) can send him into bouts of laughter and hand-flapping and the world’s widest smile. At his worst, Aaron is violent. His unspoken anger and fear burst out as thrown furniture, broken windows, and bruises for my parents and me.

There’s nothing like a brother with disabilities to make you doubt the existence of a God. There’s the selfish doubt—the kind I felt as a kid when Aaron ripped my favorite book or hit me and I wasn’t allowed to hit back. God gave my friends two or three normal siblings—why did I get Aaron? Then there’s the more compassionate doubt, the kind that occurs when I see the look on Aaron’s face as he watches normal kids play baseball or read books. Why would God have made him this way, caused him this pain? Aaron, fortunately, doesn’t seem to see it that way. He wakes up every morning babbling fountains of joy, ready to greet the day, seemingly forgetting that he can’t dress himself or tell us what he wants for breakfast.

One of my favorite authors, Martha Beck, describes her son with Down syndrome as “an emissary of angels”—a line that joins phrases like, “These kids are given to the families they deserve,” “God has a special plan for Aaron,” and other religious clichés. Anyone who’s seen Aaron’s tantrums will doubt if my brother is a direct route to the divine. But there is something about Aaron—the magnitude of his joy in contrast to the pain of his disability—that reminds me of religion’s core questions. There’s the way he invites constant re-commitment to moral values. His needs are a litmus test that force everyone—the kids on the playground, me, the grocery store clerk—to make the daily choice to act with kindness and acceptance or look down on Aaron as weird and wrong. There’s the way he recalibrates notions of life purpose—grades and jobs seem less important when Aaron, who can’t read or write, commits to finding every ounce of joy in the present moment. Life with my brother plays out on the razor edge between pain and joy. This same edge seems to be where religion, too, takes place. There’s something about dancing on that razor line that opens you up to what is most important and real.

My mom and I embarked on the four-hour drive to Antelope to pick Aaron up from Young Life camp. Young Life is a fascinating hybrid that emerges when the world of modern high school meets conservative Christianity. In my hometown, it’s a weekly youth group for Christian students to get together over Starbucks and talk about relationships, sexuality, and unfolding relationships with Jesus. In summer camp form, however, Young Life—re-coined Camp Capernaum—goes a little extreme. Complete with rope courses, zip-lines, a water park, and a rock band concert hall equipped for screaming renditions of “The Blood of Jesus,” Camp Capernaum is a conservative Christian Disneyland.

Part of the camp’s mission includes reaching out to children with cognitive and physical disabilities: the “black sheep of the world.” That’s where Aaron came in. The promotional video for Camp Capernaum featured footage of paraplegic children on the ropes course and kids with Down Syndrome singing “Jesus Loves Me.” The staff and “normal” campers get the bonus of fulfilling their Christian mission of unconditional love and acceptance. We were hooked. One day last July, my parents drove Aaron to camp, left him in the (fingers crossed) capable hands of a college-aged counselor and the comforting company of 500 other Christ-happy high schoolers, and drove four hours back to civilization to meet me at our favorite cabin in Central Oregon. We thought this was a great idea.

Unfortunately, Aaron thought otherwise. My parents had been back from the drop-off approximately half an hour—my mom and I had settled outside on the grass, napping in the afternoon sun—when we got the call. I’ve learned from experience that, “Can you keep him safe until we get there?” is never a good line to hear on the phone in relation to my brother. When Mom hung up, she didn’t need to say it: Aaron was in crisis. Tents had been ripped, tantrums thrown. The counselor had bruises. We needed to pick him up that night.

Immediately, I was jerked back to other times we’ve had to jump into crisis mode. The summer when I was sixteen, Aaron’s aggression was so bad we had to place him in a group

foster care home for a few months. But Aaron was older now, better behaved. And this time, the stakes were particularly high. This week was my parents’ 25th wedding anniversary. My parents don’t get much time together. Their 15th anniversary date ended with Aaron’s demolition of my grandparents’ bunk beds, and the 20th featured a broken window and the resignation of our only babysitter. I can count on one hand the number of nights I’ve spent with Mom and Dad, just the three of us, since Aaron was born. Now, the disappointment felt breathtaking and raw. Mom cried. I tried to make light of the situation. Then we went inside to break the news to Dad.

That’s when the first miracle occurred.

I expected Dad to respond as usual: to get angry, to slam his fists into the wall. Or worse, to look defeated. To say something about the injustice of it all (which would be true). Instead, his reaction was completely unexpected. He simply cocked his head, sighed, and employed one choice phrase. “Well, fuck.” Then he turned, opened the fridge, and began vigorously doing what he does best: cooking. “It’s a four-hour drive—you’ll need provisions,” he said as he shoved sandwiches into a paper bag.

As my mom and I piled into the car (armed with turkey sandwiches, emergency headlamps, and our favorite CDs), the F-word rang in my ears. Against all odds, I found myself laughing. Swearwords are rarely used in our family. We usually talk through our feelings: frustration, defeat, despair. This time, the F-word had said it all. Yes, life with Aaron sucks sometimes. But by receiving the news with grace, acceptance, and one well-placed curse, Dad invited us to move on. “Fuck” may never appear in a Bible, but in the moment, it consecrated all our feelings and was as close to holy catharsis as our family could get. As we turned from the Santiam Highway onto Route 273, I felt open. Cleansed. In the spirit of Dad’s response, I could sit back, trust, and watch the ordinary become extraordinary.

First, it was the rainbow. It appeared suddenly on the Western horizon: a giant arc, the kind from a leprechaun cartoon. Rainbows in Central Oregon are common enough. The weird part was this: somewhere near the horizon, the rainbow appeared to touch the ground. “Is it just me, or is it landing on…?” my mom asked. I didn’t need her to finish. If our calculations were correct, the rainbow alighted on a spot just beyond the distant town of Antelope: the exact location where Aaron was housed (probably screaming and pulling the hair of his increasingly desperate camp counselor). We didn’t know what we’d find there—but neither, we pointed out only half-jokingly, did the Wise Men following the beam of the Holy Star to a stable in Bethlehem. Our vehicle was not camels or donkeys, but a trusty red stick-shift Subaru. Suddenly, we began to see our journey in a whole new light.

“It’s a quest!” I shouted, struck with the need to laugh aloud again. “A rescue mission!” This was not a defeated retrieval of a violent brother in a broken family. Instead, it was a mission, a pilgrimage, a Journey with a capital J. What did those Young Life people, with all their well-meaning acceptance and love, know about Aaron? The road became an adventure: to rescue Aaron from a horde of rock-band-singing religious fanatics so intent on demonstrating Christian openness to difference that they were ignoring the signals, needs, and identity of my brother in real-life form. I don’t mean to diminish the good intentions of Young Life. But organized religion just can’t contain Aaron.

About that time, we started to worry about Dad. I pictured him sitting alone at home on the eve of his anniversary, reliving the disintegration of our family and the burden of Aaron. We’d just passed Mile Post 120 when I got the following text:

“This whole thing is pretty messed up. I guess this is the summer of the family of four. But it is quite a family. I feel blessed. I don’t believe in whatever entity they are fabricating at Young Life camp, but I do believe in something Higher Power-ish. And I do believe in us. Let me know when you are back in cell range after the extrication.”

My dad is not religious. Since escaping the grip of conservative Baptist parents, he’s taken a twenty-year hiatus from organized worship of any form. His sudden reference of a Higher Power was enough to make this text feel like some kind of sign. But Higher Powers aside, there was more to his message. “It is quite a family. I feel blessed…”

“It is,” I found myself saying aloud. Mom and I spent the next fifty miles talking about the strength of our family. How my parents defy the odds—around 70% of parents of autistic kids end up divorced. How, when Aaron was in foster care, we took a leap of faith (against the advice of his social worker and behavioral therapists) to bring him back home. Because of Aaron, words like family, loyalty, and unconditional love are not abstract. He forces us—or, depending how you see it, invites us—to make daily choices to live by these words.

About that time, the sun set. It you’ve never watched a sunset over the high desert hills of Central Oregon, you’ve never seen God-light. The scarlet beams fell so perfectly on the purple craggy hills that they looked like a movie set—the kind of beauty that literally hurts. “Pull over the car,” I said, but my mom had already turned into the shoulder. Doors gaping open, Bon Jovi blasting, we spilled into the middle of the road. The static desert air felt goose-bump cool on my bare arms and legs. I’d kicked off my Tevas in the car, so my feet met the still-warm asphalt. We pranced. We leapt. We shouted and sang. We bowed in prayer. “Thanks be to God! Praise to the Higher Power, whoever He or She may be!” The words came of their own accord: “I don’t understand. But I give thanks. I can praise. I can love…” Love. Love. The word seemed to beat in the tires of our car when we finally piled back in, shut the doors, and drove off in silence toward the darkening hills.

Our arrival at camp was anticlimactic. We wound between miles of low-lying cement cabins, a pond, and several foreboding black gates before parking the car. There, in front of his cabin, stood my brother. Holding his hastily-packed backpack, clad in a camp t-shirt and a red sombrero, he quivered with delight. This was not the flailing monster we’d feared. “Oh, hi!” he proclaimed, clearly thrilled to see us.

“Ever since we told him you were coming, he calmed right down,” said Mike, the frazzled counselor. “It was almost magic.” This came as no surprise to Mom and me. Of course Aaron sensed that help was on the way. Of course he was somehow aware of the cosmic shifts that had unfolded in our family. Aaron may not know his ABC’s, but he knows this kind of thing.

Then came the rain. As we dumped Aaron’s luggage in the trunk and pulled out of camp, our windshield nearly cracked under raindrops the size of ping-pong balls. It reverberated on the empty hills, turning red dust to violent rivers. Lightning splayed on the horizon. As we drove out the gate, it kept coming. Purification. Catharsis.

On the way home, my brother was the perfect embodiment of Aaron-joy. We sang all his favorite songs: camp tunes (though none of Young Life’s), Sesame Street, Raffi, until our throats were sore. As Aaron’s chatters muted into sleep and his sombrero tilted sideways, the rain lifted. The road to Antelope had one last miracle in store. Stars. The kind that make the Milky Way actually look like spilled milk and justify the centuries of folk songs about the Big Dipper.

The week that followed turned out to be the best week of our family’s life. We sang, played baseball, hiked, cooked. Certain moments were harder with Aaron—a couple of smashed bowls when we ran out of strawberry ice cream, or the fact that family hikes required constant medleys of Christmas carols to propel Aaron up the trail. But on the whole, it felt better to be a family of four than a family of three.

It could just as easily have not turned out that way. But even if the week had been a disaster, the experience would be no less holy. That’s how it is with Aaron. My brother bridges the gap between religion and everyday life. He causes us to question the kind of life worth living. Where is the razor line between suffering and joy, between pain and love? How can we take this messy knot of human lives—made messier by Aaron—and choose to reach ever more intense heights of love?

These questions are hard. But they are the ones worth asking. With Aaron, we ask them every day. If that’s not a kind of religious practice, I don’t know what is. The phrase “living on a prayer” comes to mind. It is hard work, but in the end, it is all we can do.

As we turned to the final stretch of Route 293, I got a text from my dad. It was a poem from our favorite poet, the 14th-century Sufi mystic Hafiz.

“Out of a great need

We are all holding hands

And climbing.

Not loving


Is a letting go.

Listen:

The terrain around here

Is
 Far too

Dangerous


For


That.”

Emily Boring