‘I wish I’d known clefts create courage’

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This article was published 12/04/2018 (2911 days ago), so information in it may no longer be current.

Julie Cwir created the resource she wished she had when her child was born with a cleft lip.

A mother who knew little about cleft abnormalities more than six years ago has since published two books. They’re packed with stories written by parents navigating life as their child copes with a cleft lip and/or cleft palate.

“When it comes to our own cleft journey, right now it’s calm,” said the Souris mother of three. “Where we are right now, I want to be that person to help others share their stories and be that encouragement to others.”

People around the world have contributed to her books, including two sets of parents living nearby in Hartney: Brenna Bartsch and Mitch Eastman and Trisha and Brendan Hicks.

Knowing neighbours who’ve experienced the same thing is comforting, Cwir said.

“It’s one thing to meet people online, but when you get that face-to-face and when you can hang out with them, you can just sit and talk and visually see what each other are experiencing. It just makes that connection all the more deeper.”

The bond extended to the written page, with their three children — Kaeden Cwir, 6, Aubrey Eastman, 2, and Aidrik Hicks, 2 — photographed for the cover of Cwir’s latest title, ‘I Wish I’d Known Clefts Create Courage.’ Another local child, Beckham Sanko, 6, of Brandon was part of the photo shoot.

Submitted write-ups from the Bartsch and Hicks families are included in the book.

“I just want people’s stories to be heard,” Cwir said, “and often, when it comes to facial differences, we might not get the full story.”

Both cleft lip and cleft palate are facial malformations that occur when there isn’t enough tissue in the mouth or lip area, and the available tissue does not link up properly. One in 700 children are born with a cleft lip and/or cleft palate.

A cleft lip is a separation of the upper lip, which appears as a narrow opening in the skin. A cleft palate is an opening in the roof of the mouth.

Before the three sets of local parents met in-person, Cwir’s book was making an impact.

Brenna Bartsch remembers her fear when she first discovered, at an ultrasound midway through her pregnancy, that her child likely had cleft palate.

“I cried on the way home, I had no idea what that meant.”

She called her mother, who had a better understanding of what the birth defect was. She researched it online, which she considers a terrible decision as the internet was cluttered with worst-case scenarios.

After a few weeks, she was referred to Cwir’s book. The first-person perspectives were invaluable.

“Then you go to the right resources, it definitely makes you feel better,” she said. “It makes you realize how common a cleft is.”

After Bartsch’s daughter Aubrey was born in August 2015, Brenna was sharing her story of parenting a cleft-affected child on social media. Those messages were seen by Trisha Hicks, a mother also in Hartney shocked to learn their newborn would likely have a cleft lip and palate. Aidrik was born in January 2016.

The mothers started to chat about their shared experiences and learned that, with a few procedures early in life, their child would otherwise have few challenges. Their kids, both two, now get together occasionally for play dates.

“It was only a day or so when we were devastated,” explained Aidrik’s father, Brendan Hicks, of when they discovered the news.

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“We went straight from being devastated to learning as much as we could.”

For a cleft-affected child, the first months are particularly challenging. There are procedures to undergo. Feeding challenges require a syringe to be used instead of a spoon.

Hicks said his son spent nearly a month of his first year in a medical setting.

But by the age of two like Aidrik and Aubrey, a cleft-affected child lives a normal life. A mark on the upper lip fades with age and is mitigated furtherthrough surgery.

“A few months after the palate surgery, the last little over a year now, he’s been basically doing everything else his older brothers did when they were his age,” Brendan said.

Cwir believes kids born with cleft or other differences are stronger for the experience. “Clefts create courage,” she explains.

“It’s something that they can’t change, it’s something that they have to learn to overcome.”

She finds additional similarities among parents. They learn to be blessed by the hardship they endured and fall in love with the way their child was originally created.

After the surgery, it’s “learning to love a new smile,” Cwir said. “Sometimes parents will miss that smile.”

You can purchase a copy of ‘I Wish I’d Known Clefts Create Courage’ online by searching for the book on Amazon. Her website is iwishidknown.yolasite.com.

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