Posted on by Gillian Marchenko

Standing as a Writer, a Lesson Learned from My Daughter with Down Syndrome

My four children are blessings.

But they also make it challenging for me as a writer to, well, write.

After reading Heather St. James’ hilarious post last week about writing with kids in tow, a thought occurred to me. Yes, it is challenging to write with kids, but they also are life-sized object lessons to spur on my pursuit of publication.

Here’s an example.

Our third daughter, Polly, who was born with Down syndrome, has low muscle tone. When she was two and a half years old she wasn’t close to walking, so her therapist suggested a stander; a wooden contraption with Velcro and steel to buckle your child into. The hope was that Polly would bear weight on her legs, build muscle, and start to tolerate the sensation of standing.

She was to stand for three hours. Every. Day. Did I mention she was two?

The first few days Polly was ambivalent. “Polly, time to stand,” I’d sign and say (sign language at the time being her primary form of communication), and she’d shrug her shoulders as I strapped her in.

Soon, though, she grew combative. She learned a few tricks, like to hike her rear up over the thick leather strap to make a seat to rest on, or to pull the Velcro strap apart one-handed, thus freeing herself from her therapeutic shackles.

I’d raise my eyebrow, and she’d look at me like, “What? I’m standing?”

The season of the stander was a difficult time for our family. But the strength my daughter acquired was undeniable. After two months, she pulled to stand on her own, with a triumphant, cheeky grin plastered on her face.

How does this relate to writing?

When I first started writing, I don’t think I actually wanted to write. I wanted to be known as a writer. I wanted to see my name in print. I craved the imagined silence of hours ticking away at a computer somewhere, alone, without my kids hanging on my legs.

But I lacked writing muscle. When it actually came to “butt on the chair” time (to quote Mary DeMuth in her book 11 Secrets to Getting Published), I waxed and waned between ambivalence and combativeness. I wanted to write the next great American story in one sitting. I didn’t want to have to work at it.

I discovered that good writing demanded writing muscles: write consistently, set deadlines, read about the craft of writing, learn from others living a writing life. Also, growing muscle required humility. I needed to ‘fess up’ when I, like Polly, tampered with the shackles of a literary life and attempted to squirm free.

If I let myself get out of hard work consistently, I will never learn to stand as a writer.

Sometimes when I write, the vision of Polly in her stander pops up in my mind. There are several other things besides writing, too numerous and embarrassing to list, that I try to sabotage in my life. I kick. I undo. I push.

My daughter–patient, diligent, and courageous in her daily attempts to do things I take for granted–teaches me a valuable lesson.

If I want to publish a book, or even as Papa Hemingway says, “write one true sentence,” I need to put in the time, effort, humility, and courage to grow strong enough to stand on my own as a writer.

P.S. An update on Polly. She is now six years old. She walks, runs, climbs stairs and in fact, we can’t get her to slow down.

30 Replies to “Standing as a Writer, a Lesson Learned from My Daughter with Down Syndrome”

  1. Polly was creative in her resistance. There’s a parallel there, too. :o) Papa Hemingway was also a proponent of placing the seat of the pants in the seat of the chair.

  2. Thanks for this! It’s nice to know that I’m not the only one who has anxieties over the process. And it’s wonderful that your daughter is doing so well now!

  7. …she’d look at me like, “What? I’m standing?”

    That…is…AWESOME. It made me laugh, because I recognize it. I have a 5-y-o daughter with Down syndrome, and you’ve encapsulated our daughters’ personalities beautifully in that one sentence. 🙂 My daughter has always gamely gone after the next milestone, even when it takes far too long to get there. Yes, it is inspirational. I love applying it to the writer’s life.

    1. Hi Kathleen, thanks for the comment! Excited to hear you have a little one with an extra chromosome. My ambition and enthusiasm generally pales in comparison to Polly’s. What a blessing it is. Thanks for commenting!

  10. Pingback: Standing as a writer, a lesson learned from my daughter with Down syndrome | Gillian Marchenko

  11. What a beautiful and inspiring story, Gillian, thank you so much for sharing! You’re so right. It’s those writing ‘muscles’ that need continual work before we can ever hope to achieve our dreams. Great timing too—after a summer of letting little things slow me down, I need to do some conditioning! (:

  13. As I enter a month long self-imposed writing frenzy, I’ll think of Polly when my backside goes numb from sitting too long. Your story inspires me to stand strong in my resolve to finish what I’ve started.

  14. Gillian, you have made Polly my model of inspiration. How well I know all the tricks to avoiding building my writing muscle. Thanks for this lovely post!

  15. Pingback: A place in the publishing world for my book about Down syndrome? | Gillian Marchenko
  16. Pingback: Down syndrome is not a sickness - Gillian Marchenko | Gillian Marchenko
  17. Pingback: 10 Kooky Tips On How To Write A Book | WordServe Water Cooler

Comments are closed.