I stood in front of the bathroom mirror, giving my reflection a pep talk, “It’s Advent. It’s the first time you’ve taken your whole family to church in a year. Something is going to happen. There will be a gift for you there.” Going to church together was a big deal because not going to church together was a big deal.
I am a former missionary-kid turned pastor’s-kid who, even after my dad died, didn’t go more than a couple Sundays without my butt in a pew. I married the son of a Presbyterian preacher. We met young, walked down the aisle before I turned twenty-one, then spent the next few years becoming parents to two baby boys and eventually our youngest son Zion, whom we adopted.
Zion isn’t the reason we stopped going to church all together a year ago but he was a perfectly-timed straw on the back of a camel. After all of those years of gold-star church attendance, Bible study leadership, classes on apologetics, leading worship, and saying the right words about all things sin/hell/racial issues/bible/sexual orientation/women in leadership/Jesus, Jeremy and I were tired of pretending that it all still made sense. We had grown up and realized the faith of our mothers and fathers was not identical to the spiritual landscape that had formed inside of us. It was hard to go to church week after week and walk away with so many things that didn’t sit right. It was also logistically difficult because of Zion.
Zion, to the naked eye, is the most wondrous, wide-eyed, chicklet-tooth-smiling, coke-bottle-glasses-wearing, earnest and tender Black eight-year-old boy you have ever seen. Zion is also disabled. We adopted him when he was three pounds and living in a plastic incubator in the NICU and I have been his human incubator and emotional life-support ever since.
When you are the mother of a disabled and chronically ill, at-risk child, you have a choice to make. You can either melt into the sadness of the pain and struggle, believing that you are unlucky and live in the Land of the Damned, or you can rise, own your place, and become the fighters you were meant to be for your child and each other. As much as I can, I keep trying to go towards the latter, to rise, to grow and learn, and never give up advocating for my son and his broken body and his rightful place in this world.
But then there’s church, or any public place where a kid who is eight and has disabilities ends up but is expected by others to be still and normal and quiet, and everything goes to hell.
This Sunday, I did everything right. I made sure Zion had his seizure and asthma meds before we left the house. I rushed everyone out the door so we would get to the church early. I chose our signature last-row pew, which I assume they kept open for us all year. I made sure Jeremy got Zion the cup of water (with a lid and straw) that he always needs, and the second cup, full of donut holes that Zion insists he must have but never eats. I got the clipboard of pages to color on and the box of crayola crayons, ready and on my lap. I made sure to put Zion between his dad and I so we could handle him from both sides, like a tennis match. Then I proceeded to be the keeper of all things drink, snack, kleenex, clipboard, and crayon related to avoid Zion dropping anything and causing a scene. This was not my first rodeo.
When the service started, I blossomed into a cross between a mother and an octopus, growing arms and legs I didn’t know I had in order to anticipate and attend to Zion’s every need. In the welcome and announcement time he needed three tissues to blow his nose (Advent season is also asthma season, and it can suck it). By the time the choir director asked everyone to turn to hymn 219 and the first Christmas carol was being sung, we were already done with the first coloring page of a baby Jesus with a jerry curl on top of his head, wrapped in a blanket, and laying on some hay. I looked through the book and realized there was only one more outlined page of a nativity scene to fill in and then a few blank papers. I was gonna have to improvise.
The children’s pastor called all the little ones to the front for their own special message and Zion shook his head “no.” I patted his back, gave him a kiss on the top of his head and whispered, “It’s okay, bud, you don’t have to go.” The lady proceeded to talk about Advent, about this season of waiting, and how “the pastor is going to be preaching today on waiting with patience. So we all need to practice waiting and having patience.” Not hard-hitting theological stuff, I’ll admit, but the kids walked away with a happy-enough dazed look, back to their donut holes and heavily-perfumed mothers. (This specific Sunday had a very “Old Lady” smell to it.)
I remembered the one and only time Zion went to the front, a year or two ago, and sat criss-cross-applesauce on the cold tile floor with the other kids to listen to his first children’s message. The lady ended her talk that day by asking each of the kids to read something out loud, not realizing that Zion—who had taken three years to complete kindergarten and first grade—didn’t know how to read yet. He was up there in front of the entire congregation of people who have never learned his name or ours, stumped and frozen. Finally a little girl next to him couldn’t contain her show-offy literacy and told him the answer so loud everyone heard her, which he then repeated, and the teacher awkwardly moved on. That was one of those, “oh yeah,” moments for me. As in, “Oh yeah, my son isn’t at the same level as other kids his age or even older,” and, “Oh yeah, sometimes this is really hard and sad to watch him struggle,” and, “Oh yeah, I work so hard to protect Zion and care for him but there are some things I just can’t see coming.”
We made it through the creeds, the prayers, the second hymn from the red hymnal that smells like dust and memories, the choir’s special music, and into the sermon. Now we were in the belly of the beast, and I worked overtime to keep Zion still, distracted, and quiet. I did my best, but the kid started shifting in his seat and repetitively asking me when we were done, the kiss of death. As soon as he started coloring with only the black crayon and scribbling wide black swaths all over the collaborative and colorful art we’d just made, I knew that he was shorting-out. Mercifully the sermon, which I caught about two total sentences of, ended, and I felt proud that we were hurtling towards the finish line of the last hymn without ever having gotten a single look or comment from the people in front of us. As a worshipper, I had missed almost everything but as a mother, I had done well. Maybe worship and attentive motherhood are one in the same, I thought. Zion, all things considered, had done the best he’s ever done in a church service.
Then it happened. It was a Christmas carol too, which is a big deal for me because all my life, no matter how wonky or strange or cruel some of God’s people have been, the singing always kept me coming back. The sounds of a bunch of voices raised in harmonies and rich chorus, singing as one about a God of love, have always brought me to tears and drawn me out of my aloneness. It’s why, even though my whole family decided to ditch church for the last year, I would still sneak into that back pew alone once in awhile. I couldn’t help it. Here was a God who seemed to understand the broken and hurting ones, the ones giving their lives for the sake of another. I found the warm, glowing face of that God in those harmonies.
I was finally basking in it, my eyes finally closed, Zion’s arms wrapped around my waist as he finally calmed down, when I was jostled back to reality. I looked up to see an old-ish lady in a festive sweater and skirt, with a church name tag signifying that she was not just a member of the hospitality team, but one of the Big Dogs, as her tag didn’t just read “volunteer” but also said her first and last name. We were all singing the beginning of the second verse when she started shouting over the music, getting the attention of all five of us, while holding a piece of paper in her hands with some writing on it. My first thought was, “Oh how sweet, this lady thinks this is our first time here and she’s trying to welcome us. Maybe the paper has some info about a welcome hour or something for newcomers.”
Then the truth came out. She had been watching us the whole service. Well, not us: Zion. She had been watching Zion. And she had decided that he was very distracting, not behaving normally, and had a big problem. She had decided she was pretty sure he has a serious genetic disorder, and that it was very important we get him diagnosed. She said she was saying this because her daughter also has two adopted children, with his skin color, and they have this disorder. She had decided to write the disorder down on a scrap of church bulletin and she had decided that we needed to go home and look it up on the internet and talk to a doctor. And just like that, as quickly as she inserted herself into our complicated world, she had walked away, back to her post in the back of the church.
The last two verses of the Christmas carol carried on but I don’t remember singing them. I think my mouth moved, I think I could feel my heart beating faster and faster in my chest like a bass drum with two pedals, but I don’t remember much else. The service ended with a benediction—something about waiting on those good things that God promises, and having patience not just for the good things but with each other. You know, we’re the body of Christ, only as strong as our weakest link. Jeremy and I exchanged a knowing glance, gathered the pirate’s hoard of papers and kleenex and cups we’d used as our life rafts, then escaped in a frenzy.
As Jeremy drove us away from the church and the teens made rowdy conversation in the back of the van, I rode shell-shocked. “Did that just happen? Did that woman just tell us how to parent our son” Jeremy asked. “She didn’t even ask for our names. She didn’t even wait until the song was over. She didn’t even know our story or realize how everything in life revolves around Zion’s care and diagnoses. She at least could have let us sing one last song before she dropped that on us,” I said, fast-wiping hot tears so Zion wouldn’t see.
I have spent years protecting Zion from the ill-timed, unkind, and inappropriate words of privileged strangers, who feel entitled to speculate on our life, often just because Zion is Black and they are white. I have seen the look in his eyes in those moments that always asks, “Who is this and why is this happening again?”
I didn’t want Zion to think he had done anything wrong in that church. He hadn’t. And neither had we. Zion had been a child with special needs sitting with his family in the back row of a church on a Sunday. I had been the mother of that child, using all the tools and experience I have to pre-emptively care for him, while also working double-time to be considerate of those around us. I had just wanted to hear the singing again, to feel the love of God in a tangible way, and I had wanted to believe that the back row of a church, one that preaches about patience and waiting on Jesus, would have been a safe place to do that.
I’ve been a gold-star church gal all my life, the pastor’s daughter who worked hard to hide and shave off all my sharp and deformed and ill and messy edges in order to fit into the parameters of worthiness for people in buildings with stained glass windows. And when you hide your mess so beautifully, it’s easy to expect others to do the same, to get their act together. I’ve done it my whole life, and for far too long I thought it was the only way to get Jesus to love me back. It took almost four decades to realize I was wrong. Jesus wasn’t interested in the compassionless critics whose veneer was the cleanest. He certainly didn’t speak calmly to those religious ones who judged others and stole their brief moments of joy in order to shame them, pushing them back down into their pain.
Jesus saw the hurting ones, the broken and disabled ones, and the really tired parents who were doing their best with all of the above, and he sat next to them in the pew. He heard their stories and memorized their names. He passed them more donuts and water and told them that, in his economy, there are endless coloring pages, and everyone gets to hold their own crayons. Or something very close to that. Because Jesus wouldn’t be concerned if the clipboard was dropped or the kid with special needs shifted in his seat or got bored during a pious read-aloud sermon. Jesus would say, “These little are the ones I want close to me, up on my lap, like sticky wide-eyed kids seeing Santa, and don’t try to stop them or quiet them down, because they are the ones who own the keys to the kingdom of heaven.”
I am still waiting for the day when the ones who claim to be purveyors of that kingdom see my son for all he is, give grace to our family for being the complicated and strong and beautiful force we are, and welcome us with hospitality, generosity, patience. I am still waiting for Jesus to show up in the buildings where people use his name, tell his stories, eat his bread, and sing his songs. I am still waiting to see evidence of the one who welcomed loud and messy children and who turned over tables in a rage when the grown ups weren’t using his house in the way he wanted. I am still waiting.
This is the third part in a series from Ash Parsons on Embodiment.
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