World Down Syndrome Day, 2017

If you’ve been following all the build up for this day, then you know I’ve chosen today to share, for the first time ever, a chapter from my book. What started as a sibling guidebook turned into a realistic fiction novel* about a young man with Down syndrome’s transition into adulthood and the experiences his family must face along the way. I have been struggling to find representation from someone who understands the heart of this story and the need for it to be heard. Still I am grateful for every rejection and note of encouragement I have received. It has kept me revising…again and again and again…bringing this story to a form I feel is far more beautiful and real than its original version.

*Genre is such a tricky thing. And, before you ask, I purposefully chose to not write this as a straight up memoir.


The only person in the hallway is the man. Not a latecomer, lingering teenager, or busy usher in sight. The sanctuary seats twenty-five hundred people with balcony space for an extra thousand. At Sunday service, the front rows fill with people politely spaced out, while the back of the church packs the majority. The ushers open the balcony for overflow halfway through worship service and more often than not, it is clustered with people arriving even later than us. You would think with all those people someone else would be out here.

The hallway wraps in a gradual curve starting from the banquet room on the left end to a link leading to the church offices. I can see the doors for the three aisles to the left of ours. The turn of the wall blocks the view of the information desk and other aisles I know stand to the right of our doorway. Only minutes ago, people filled this hallway greeting one another; now a deserted western town silence lingers in the air.

The man waits for me with his hands on his hips. In the short time he has been at our church, I’ve only spoken to him once. Troy and I met him at a weekend marriage seminar last spring. During lunch break, we sat with two couples we knew along with this man and his wife. His well-built physique couldn’t cover his glaring shortness or his melon head poking out mouse-like ears sparkling with diamond studs. Not an easy image to forget. He had all the symptoms of a man suffering a middle age crisis. His wife, who was probably closer to my age than his, served as mute arm candy who laughed at all his jokes and gazed upon him with pride. He bragged of their recent two-year anniversary and his new Mazda Miata. His personality was larger than our eight-person table and he managed to switch from the person no one knew, to the person holding the reigns of the conversation, making everyone feel at ease. Despite his obvious ego issues, we liked him.

A few weeks later, I watched a red convertible with a bald driver and a blonde companion peal out of the church parking lot. Then we started seeing them every week. They were second row people and would switch from sitting in the pews to our left to those to the right, always in the second row. We never held another conversation, but the light beams bouncing off his melon head jetted a beacon of light from the gathering of bodies making them impossible to miss.

Now face to face with him, I expect someone like Dean. Mom looks at Dean as her personal hero. He saved her from a building anxiety over Jon’s church behavior. I expect similar words of admiration towards Jonathan’s manner of worship from this man. Why he asked me into the hallway for such a thing, why it couldn’t wait, I don’t know. It is an unwritten church rule: once someone is at their seat for praise and worship, you leave them alone unless it is an emergency. Especially when they have only been in the room for what, five minutes?

Nothing but blind trust consumes all reasoning within me.

I should know better.

I look at the man, my lips pressed together in an awkward smile; waiting for him to speak. Something in the way he stands before me with his arms locked at his sides and his face flat and emotionless makes me think my gut was wrong.

“This is the second time my wife and I have had to move where we’re standing because of him.”

He unlocks his left arm from its rigid position and thrusts his hand out towards the seats invisible to us through the closed doors. My eyebrows narrow as I tilt my head to the right and stare back at him. I lift my hands to my hips and let them slide into the pockets of my dress as I shift all my weight onto my right leg. He doesn’t continue speaking. Instead, he stares at me, bringing his hands to his center and connecting all his fingertips together, a gap of air keeping his palms wide apart, like an evil mastermind plotting.

He expects me to speak. His eyes widen; baited with expectation of what I will say. His left toe taps in an endless knocking, dampened by the thin layer of carpet beneath our feet. I can’t tell if it is nerves or impatience. He has on a sunshine yellow polo which is tucked into a light wash pair of jeans. My eyes settle on a perfectly centered crease in his pant legs. Who creases their jeans? A bubble rests in my throat hiding my voice while simultaneously giving me the sensation of choking. I open my mouth to speak, but feel a dryness inside signaling I won’t be able to, which is good because I don’t know what to say. He puffs out his chest and lifts his chin higher. Separating his fingertips, he bunches both hands into fists in front of his chest.

“He is loud and disruptive!” His voice rises, accenting the words ‘loud’ and ‘disruptive’. His fingertips stretch out from their fists forming a strangler’s jazz hands. Thick veins puff out on his forearms and I switch my weight to my left leg so my body moves a few inches away from him.

He tosses his hands down at his side, the same way Jonathan does when he gets frustrated, then lifts his right hand to stretch his pointer finger out towards my nose.

“You need to control him and teach him how to behave. He is a distraction.”

You’re altogether lovely, altogether worthy, altogether wonderful to me.

It is surreal to hear church music while such twisted emotions rise within me. Behind those doors, people are singing. They came here thinking they are in a safe place; a place where they can release the stresses of the past week and find rest. Instead of being in there, deceived by the beauty of some finely strung words and a piano, I stand here wishing I could disappear. I want the ground below to eat me up. To be gone from this place. Gone from this moment in time. Something like this should never happen in church. The reality of what he is saying begins slowly sinking in, spreading numbness across my forehead, into my cheeks and down to my fingertips. My stomach has crawled its way to my chest which now struggles at its ordinary up and down movement. I look at the man. This time I do not think he wants me to speak, and it doesn’t matter, because I still have nothing to say.

“Look, I understand he has special needs,” with the pointer and middle fingers of both hands he creates air quotes around the words ‘special needs’, “…but I have to tell you, my wife had an uncle who had special needs and his mother was able to control him to act right in places like this. You need to teach him how to behave. He is not acting correctly. He is a bother and I’m sure I’m not the only one around here who feels this way.”

His voice disappears with his suggestion. Is it my turn to speak? I can’t be sure. At first I thought he wanted me to apologize, which I won’t, but now I don’t know what he expects. I am standing before the first person in my entire life to be so bold to verbalize disdain for Jonathan. I step back with my left leg, balancing my weight to both legs and lift my hands out of my pockets onto my hips. I want to run away.

His arms hang down at his side, resting for the longest amount of time since he first approached me. He straightens his back and shoulders, puffing his chest out, perhaps trying to make himself a few inches taller. It doesn’t help. Even with this new stance, I am still as tall, maybe taller. I never can tell with short men. I am only 5’8”, but I feel as though I tower over men only inches taller or equal to my height. His thumbs hook into his belt loops; his elbows bow out while he waits for my reaction.

Prickles of heat scatter across my face. I imagine my olive skin is now reddening to compliment the fiery throbbing overcoming my cheeks. Warm tears form in the corners of my eyes, but that is where they will stay. My throat is thick. This must be what an allergic reaction feels like. I can’t, but I know I need to speak. The words come out crackly at first as I hear my voice, deep and shaky, not sounding like the real me at all.

“Well, first of all…I am clearly not his mother. He’s my brother,”

Take that you crazy man. Did you actually think I was old enough to be Jonathan’s mom? Are you that stupid? Dean’s words come to mind. Then Donna who told me, not even a month ago, that she loves to watch Jonathan during worship. And then my friend, Renee, who texted me that Jonathan’s singing during Wednesday night service always makes her tear up. “…and many have told us that they are blessed by watching him during praise and worship.”

The words are hardly out of my mouth, but his response is already prepared.

“They were lying, and no one else wants to say anything. But it’s disruptive. I mean, what would you think if I came to church and was jumping up and down, shaking dolls back and forth?” He grabs at two imaginary dolls and shakes his hands by his face imitating Jonathan.

Now he has crossed the line. My eyes widen at his mockery and I spit out the most obvious reaction I can summon to such a statement.

“You don’t have Down syndrome!” Finally, finally I say something of worth. Finally, something defending Jonathan. But I know it means nothing. Even now, looking back at him with the same look I give my brothers when they are talking crazy, I know he doesn’t get it. He thinks that all people should fit into his perfect cookie cutter definition of normalcy and those who don’t shouldn’t be given the light of day.                                                                                 

My eyes bounce from his frozen face up to his slick bald head. He didn’t have such a speedy response readied for that comment. I must have further offended him. He can’t comprehend how a middle-aged man dancing with dolls is nothing like a young man with Down syndrome dancing with dolls. Perhaps now he wants his apology. Never going to happen.

I feel my brain working, processing this entire conversation. Despite how hard I search for them; I can find no other words to fill the air of intolerance before me. We have been standing here an eternity.

Savior, He can move the mountains, my God is Mighty to save, He is Mighty to save.

Somehow worship is still going on and all this time, all this time not one person has passed by this end of the hall. How can this be? Where is everybody? Where is the security team? Surely someone is hearing this. Surely someone will come to my rescue, to Jon’s rescue. My mind feels like an overloaded piece of machinery. Accusations unfamiliar to me are being hurled continually. I don’t have the ability to process one concrete thought.

He’s wrong. He’s wrong. He’s wrong. That’s all I think. That’s all I know. I continue to search my mind for the argument, the defense, the perfect words to speak; but they refuse to come. Nothing comes. I cross my arms in front of me, my sweaty hands grab onto my biceps as my fingers dig into my skin. I will stand here, staring at his disgusting, glistening, bald head all day, but I will never apologize for Jonathan.

“Listen, I just can’t stand by and not say anything. This is a situation that needed to be addressed; no one else around would do it, so I had to. He shouldn’t be allowed here if he is going to act ridiculously by waving dolls and dancing and singing so loud. People like him do not belong here.”

My ears have a persistent buzzing in them. It is ringing so loud, taking up so much space while the rest of the world is silent and still, like I have pressed ‘pause’ and I am the only person moving. My breathing is jagged, and my stomach aches with the pain of having thrown up a dozen times. The toe taping starts up again. I squeeze my eyes shut and try to force out the ringing in my ears. My heartbeat is in my throat, pounding faster than I have ever felt. Prickles tingly like goose bumps run all over my body. I feel them in my calves, on the back of my neck and even under my arms. Could I be having a heart attack? Do women have heart attacks at twenty-seven? Say something! Say something! Say something!

“Well, I disagree.”

As soon as the words leave my mouth I know I have failed Jonathan. My response is the most worthless response any sister could ever offer in defense of her brother. Nothing more he says will hurt me, because I have done the worst possible damage myself.

He frowns, wordlessly communicating his dissatisfaction with my comment. But, what did he expect? For me to remove Jonathan from church? For me to agree with him? He opens his mouth to speak, but instead; shakes his head, throws his hands into the air, and turns on his heels back to the sanctuary. My thoughts swim in the fog filling my head. My legs are heavy and my knees tight. An icy sensation crawls from my fingertips to my shoulders. If I move, I might shatter. I am not sure how I came to this point. I don’t know how long I have stood here in this hall. I don’t know what to do, but one thing I know for certain…

I cannot go back inside.


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