The One Thing We Can Count On As Parents–And People

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Regardless of privilege, education, health, age, or income, tragedy can strike us all. But to Emily Rapp, knowing that death is the only thing that’s certain makes living a little more miraculous.

I recently spoke to a group of Christian kids with disabilities and their parents in New Orleans. I am a trained theologian, and my talk focused on the healing narratives in the Synoptic Gospels. I argued that the traditional pairing of sin with disability needs to be re-imagined and it is communities—not people—that need to be healed. Transformative healing power happens en masse when people practice radical acceptance and inclusivity.

Weirdly, I formed the thoughts for this talk/sermon while reading the recent marriage announcements in The New York Times and perusing the photo gallery of children up for adoption in the state of New Mexico, where I live. I flipped back and forth between these images. First, the magical dream world of rich, privileged, mostly Ivy League-educated young people (there was one gay couple not in their 20s and 30s) setting forth to live their lives in blissful holy matrimony. I felt that I could see their charmed futures (perhaps this is the intention): well-organized apartments on the Upper East Side, nannies and housekeepers and personal organizers, rocket-like rises through a career or degree program of choice. I could see them putting back a bit of money for a second home upstate. I imagined the woman pulling out those workout cards from SHAPE and actually using them at the gym. The man would pick out the perfect wedding gift and make a reservation at a hard-to-book restaurant. These dream newlyweds would take fabulous summer vacations and their children would be naturally conceived and disability-free. Flip to the photos—to the world, really—of kids up for adoption: sweet-faced and waiting and with stories that aren’t narrated. Some of them look haunted, others look perky and hopeful. One’s mind imagines all kinds of scenarios, some most likely more truthful than most, although after decades of watching Law and Order, it’s difficult for me to conjure pain-free pasts for these kids.

For me—white and Ivy League-educated (although not rich by American standards), who has been married twice, lives with a disability and is caring for a terminally ill baby while going through a second divorce—the pictures from the Times register like a magical promise. Look at these super-smart, beautiful people who did everything right and now will be rewarded with a totally kick-ass, enviable life! A promise, maybe, but more like a lie. Nobody knows what struggles those couples might face, what they might endure. The parents in that room of kids with disabilities were intimately aware of that, the kids up for adoption are aware of that, as many people are. Moving between these two image galleries felt like practicing some kind of strange mind voodoo, something that is advertised readily in the French Quarter along with the ghosts and effects of the hurricane still overwhelmingly clear in every quarter of the city, even those thick with tourists boosting the local economy.

Long before I had my son, my husband and I thought about adoption, and I am still thinking about it now. As soon as we mentioned that we’d been to an adoption information session in Los Angeles County, in flushed all the warnings, all the ignorant sayings of doom: “Oh, those kids are so damaged!” “Don’t you want to have your own baby?” and this last one, perhaps the most disturbing: “You never know what you’re going to get!” As if you ever know what will happen when you mix the mysterious muck of your gene pool with someone else’s.

Although their pictures might not be in the papers (except as cautionary tales or sad sack human interest stories), I can see those disabled kids and their parents in New Orleans as if they were sitting before me right now. Those parents did not know “what they were going to get” when they got married and had children. Guess what? They probably would like their children to have it a bit easier, to not be forced to struggle so hard, but they are not unhappy with their children. They love them. It is truly hideous to suggest otherwise. I had a perfect pregnancy. My son is physically gorgeous. And he will not live to be 3 years old. His brain is devastated and he is damaged in every significant way. I certainly didn’t know what I was going to get, even though I was anxious to do everything “right,” whatever that means. But Ronan is mine, my own, and loving him has been the most transformative experience of my life, no voodoo or magic required. And I wouldn’t have chosen it. And yes, I’m sad, but I don’t feel tragic. I wish I didn’t have to watch my son die, but we are all dying. We will all die. Why does it often feel as though everyone has forgotten this basic fact of being alive? A reality that is, in fact, a prerequisite for having a life to lead in the first place?

In New Orleans, they bury their dead above the ground. The living mix (and if you believe the tour guides, continue to walk) with the dead. The city is full of still-living people who got dunked into a dark cave and had to shine a light around, looking for faces and help. People showed up. They stuck around, for themselves and for each other. In this place, live people who when thrown together became—so it seemed to this awestruck observer—resilient, almost magically so. Like kids all over the world up for adoption. Like the parents of disabled kids. Like the parents of terminally-ill kids like myself, who wants to adopt a child in the future. And yes, like those people who look perfect in the marriage announcements section of the Times.

In my less hysterically sad moments, I can hold, with equal feeling, good wishes for all those newly married faces in the Times as well as those waiting faces on the adoption website and all the funky, interesting people I met in just two short days in New Orleans. I do, in fact, try to practice what I preach, although I often fail at this, as we all do.

At a store called Lost and Found in the French Quarter, I found a medallion of St. Catherine of Siena, patron saint of the dying. “You got someone in your life that’s dying?” the shop owner asked me. “My son,” I told her. She slipped the chain around my neck. “That’s on the house,” she said, and moved from behind the counter to give me a fierce and sweaty hug. I stumbled back into the street with tears in my eyes and was handed a glossy advertisement for a strip club on the corner, which made me laugh.

I’m the most radically compassionate when I remember that we all know what we’re going to get in this life: death. The miracle and the curse held together, the most intimate pairing, a terrible but beautiful miracle.

Emily Rapp is the author of Poster Child: A Memoir (BloomsburyUSA, 2007) and The Still Point of the Turning World (forthcoming from Penguin Press, March 2013). She is professor of creative writing and literature at the Santa Fe University of Art and Design in Santa Fe, New Mexico.

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