There are a lot of stories about special needs people and the specific, redeeming qualities about them that make them important to society and a joy to be around. Although I could go on for days about the things that make my sister an actual treasure, this story is about something different. This is a story about a church getting something right.
The memories are blurry now—more like an aura of a time long passed than a clear recollection. There were trees, grass as far as you could see, a swing set. Paisley patterned cotton dresses and wide-brimmed hats in church every Sunday. The freshness of sunshine blended with the earnestness of constant longing. This was the beginning.
There were three in our family then: my father, my mother, and me. My dad had finished his MDiv and was seeking employment as a pastor in New York City. My dad wanted a pastorate, but all I wanted was a sister, and I prayed for one each night. We both had our prayers answered in 1990. My father signed on to serve a church that would end up serving us, in innumerable ways.
The drive from Virginia seemed endless, and the rented condominium we moved into felt like a palace with its ornate wallpaper and an actual chandelier. Things shifted from beginning to begun in a way that was tangible even for a three-year-old to sense.
My parents were finally doing it, living out their biggest dream. They were here.
My father’s job started in January, but Sarah came in November. She was the real watershed moment; her arrival was the thing that changed everything.
Sarah was born with a condition that is so rare that it is not named, for reasons no one has ever been able to tell to us for certain. The condition has symptoms, but they vary wildly from day to day and cannot be attributed to medical precedents. The condition manifests as a collection of chronic health issues and developmental delays. Since there is no language to describe why my sister is the way that she is, we are left simply with the term “disabled” by way of explanation.
This year, my sister will turn twenty-seven years old. She has never driven a car. She has never left the house without another person accompanying her for supervision. She has never made a doctor’s appointment or had a gym membership. She has never earned money.
My sister will never do almost any of the things that you and I move through the world doing and undoing without a thought to the abilities they require.
But when Sarah was born, I was jealous, because her name meant princess and that’s what I wanted my name to mean. How jealous would I have been if I could understand then the kind of princess my sister would grow up to be?
Nothing accelerates closeness like a crisis. The church community that my father had so recently been chosen to lead stepped in with casseroles, and prayer meetings conducted in heavy West Indian accents, and the brave kind of sympathy that does not look away.
Sarah brought with her a reckoning, a restriction, a humility, a fear of the unknown. Though we were still strangers, these saints were not afraid to love my sister. And my father, reticent and private by nature, had no choice but to let that love come pouring in.
The Royal Guard
This church was the smell of burned coffee in a rented building, the beauty of different colors of skin peeking out from pencil skirts and with their knees all pressed together.
It was people that didn’t have anything but still wanted to give the pastor’s kids the perfect gift at Christmas. People with green cards that said “refugee.” People without jobs and people without all their teeth. People that smoked or drank or used to or were trying to stop, and people that could not sing on key but still wanted to sing for Jesus to an old tape in front of everybody. The best people.
Some of them have moved away, and some have gone to heaven. Some of them stayed and are still there. All of them are part of a miracle that is great and dear, and so representative of who I think God is.
There’s a classic book that was made into a couple of movies of the same name called A Little Princess. I’ve always found it oddly parallel to my sister’s life. The story is a redemption arc about a spoiled little girl (named Sara, natch) whose father leaves her at boarding school when he’s called off to war. The girl loves her fancy dolls, and her expensive clothes, and her things. If you’ve ever seen any movie or read any book, you can probably guess what happens, but spoiler alert I guess: the dad gets killed. Everything the girl felt entitled to is gone in an instant when it’s revealed that her father lost his fortune before his death. Orphaned and disinherited, the girl makes her way through life by befriending whoever will have her. At the end she finds out she’s richer than she ever dreamed.
I have seen other communities welcome a significantly disabled person. Their tendency is to see the person as a mascot, the entertainment, or at least a custom to engage with. This is better than an outright rejection. But at this church, what some might have seen as my sister’s brokenness was celebrated. So what if Sarah’s body didn’t work right, whose did?
Her enthusiasms were met with equal enthusiasm. Her highly attuned fashion sense (the brightest of colors, the loudest of prints) was complemented. Her hair was stroked and envied. Her aggressions were gently corrected, and above all, her heart was protected.
These people could see what only those that have looked at the blistering unfairness of life are able to understand, and that is that Sarah is simply a person waiting to be healed—like the rest of us. She can be challenged to be better, she can seek to improve, she can fail at being her best. Sarah is not all blessing, and she is not all burden. She is always both.
The church recently held a banquet in connection with a charity for special needs individuals. This was the focal point of my sister’s life for months: the makeup, the hairstyle, the friends that were coming, the outfit she’d wear. Families of special needs individuals will recognize the brutal cruelty of the fact that Sarah’s symptoms flared up right before the event.
She was heavily sedated and had a hard time interacting on the day of the banquet, but nothing in the world would have caused her to miss it. It was a victory to be there, medicated as she was. Sarah stumbled across a red carpet, all 4′ 9″ of her, her voice erupting in hearty greetings at the dozens and dozens of church volunteers as she recognized them. She embraced them all, and they hugged her back, these beautiful people that have blessed her whole life by never seeing her as the most broken one in the room.
My dad posted a photo afterwards of Sarah in her long blue dress, rhinestones sparkling in her auburn hair. She’s wearing soft makeup, and her green eyes stand out against her pale and freckled skin, her face is slightly puffy from the meds, but she is smiling. The photo has hundreds of likes and what seems like as many comments, one of them from a woman that moved from New York to New Zealand several years ago. “Our princess,” she wrote simply, with a heart.
These things are true about my sister: she is charming, she is inventive, she is strong. She loves to laugh. Born into a body that could not serve her as she would have hoped, my sister has challenging limits. And it does not appear she will be healed during her time on earth, and that is a loss. There is a heartbreaking list of things that Sarah will never get to do. But being loved and seen for who she is will not be one of them.
Cover image by Loius Blythe.