How My Daughter With Down Syndrome Influenced My Writing

This is a guest post by Brett Marie, a fellow writer. He reached out to share about his new book coming out and how his daughter, who has Down syndrome, influenced his writing. I have not read his book, but I told him I’d be glad to share about his journey here on the blog.
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A funny thing happened to me while I was writing my novel The Upsetter Blog. Three months after I wrote the opening, and right when the story began sprouting new characters and subplots, my daughter tumbled into my life. That’s not the funny part – and maybe ‘funny’ isn’t the best word. What threw me and my writing for a loop was the announcement from our doctor upon Miss Marie’s arrival: “We think that she has Down syndrome (Ds).”

A writer’s work is a playground for their subconscious, so from the moment the doctor uttered those seven words, the story that was beginning to take up a sizeable chunk of my brain was bound, inevitably, to grapple with Ds. Therefore, on the night that my Miss Marie presented herself to us in all her unique glory, Patrick Barclay, the character, was conceived. And just as Miss Marie and her extra chromosome would wriggle their way into every aspect of my life, Patrick would gradually wedge himself into the very heart of my novel.

The Upsetter Blog started as a simple road novel about a rock band and their troubled lead singer, drawing from my experiences fronting a Los Angeles-based group. Wild gigs, backstage tussles, these were to be the set pieces for a fairly generic rock ‘n’ roll odyssey. To narrate, I envisioned a boilerplate writer who would chronicle events and add little more. But suddenly, with Miss Marie’s arrival, my wife and I found doctor appointments, physio and occupational therapy sessions, and everything else that comes with parenthood taking up as much of our headspace as sound checks and rehearsals. My heretofore faceless narrator quickly became Henry Barclay, a full-fledged human being with many of the same hopes and fears we had. Of course, Henry needed an object for these hopes and fears; into that space stepped his son, Patrick, a grown man with Ds.

Patrick started out having a lot in common with Miss Marie. Somewhere along the way though, they diverged. Having musicians for parents, my girl always had an instrument within reach, and a song playing nearby. Sitting in my lap, she would bang on the keys of our family piano even before we gave her a working toy piano for her first birthday. Gradually this banging turned into something tuneful, and eventually she became a musician in her own right, wowing audiences from New York to Liverpool with her spirited playing. But Patrick hadn’t grown up immersed in music, and so, absent a rewrite, an ingrained familiarity with different instruments would have seemed tacked on.

Patrick didn’t get that rewrite, the one that might have seen him pick up a guitar and save the day with his unexpected talent. But it wasn’t my laziness that made that call. I’m proud beyond words every time my daughter nails a performance. I’m prouder still when listeners approach me afterward to tell me how moving they’ve found her playing. But I’d have found plenty more to make me proud if my girl had never played a note.

For eighteen years, my subconscious has used The Upsetter Blog as a way to examine life as the parent of a person with Down syndrome, and moreover, to ask an important question: The issues that my girl presents – developmental delays, impediments to her health and mobility – do they make her less valuable as a human being? And the answer I’ve found, every way I’ve put the question, has been an unequivocal No.

Throughout The Upsetter Blog, Patrick Barclay plays a supporting role, staying home in L.A. while his father travels the country blogging my fictional band’s tour. But, like my Miss Marie, he’s never far from his father’s mind, and his presence in the wings adds an important element, intangible but undeniable, to the proceedings. When he finally takes center-stage at a crucial moment in my story, he proves his worth – not with some hidden talent that compensates for his disability, but rather with that capacity for love and compassion that makes him as human as anyone else.

I’ve received some gratifying feedback since my novel started reaching readers. No compliment has given me more joy than one reader’s proclamation that Patrick was her favorite character. That’s more than a compliment – it’s a vindication. Some might say I took a chance presenting a character with Ds who has no great talent to ‘redeem’ him. But I think I got it right: through it all, Patrick is just Patrick, and that is enough.

The Upsetter Blog

To write the Upsetter Blog, washed‐up author Henry Barclay will have to leave behind his adult son Patrick, who has Down syndrome, and follow the Flak Jackets, a rock band of no renown, on a grueling, months‐long nightclub tour for the obscure magazine startup, Upsetter. He’s reluctant to take on the assignment, but when Patrick catches the band’s act and immediately declares himself their ‘Number One Fan,’ Henry sees a chance to redeem himself for decades of clumsy parenting. Setting out from Los Angeles, blasting through the deserts of Southern California and up the West Coast, Henry quickly learns how tough this job will be. He did not expect he would become obsessed with the mystery behind lead singer Jack Hackett’s tortured wailing and violent onstage antics. He did not expect he would fall in love with Jack’s new girlfriend, Wendy, who’s along for the ride. Faced with Jack’s hostile stonewalling, struggling to hold back his own feelings for Jack’s girl, Henry can only hang on tight and keep writing, filling in the blanks Jack leaves with musings about his own troubled past—and watching in horror as life on the road takes its toll, and Jack’s fragile world begins to fall apart.

The Upsetter Blog comes out on September 15. It is available for pre-order from Owl Canyon Press, Amazon, and elsewhere.

Brett Marie Bio

The literary alter ego of American rock ‘n’ roll musician Mat Treiber, Brett Marie is a contributing editor for the online journal Bookanista, and a former staff writer for the website PopMatters. His short fiction has appeared in various magazines, including New Plains Review, Words + Images Press, and The Impressment Gang. His story ‘If It Had Happened to You’ was shortlisted for LoveReading UK’s first Very Short Story Award in 2019. He currently lives in England with his wife and daughter.

Read more of Brett’s thoughts on fatherhood, disability, and rock ‘n’ roll here.

Visit Brett at his website, on Goodreads, or on Twitter: @brettmarie1979.