Choose kind
‘Wonder’ inspires Wisconsin woman to speak about her facial difference
FOND DU LAC - From a city park bench, Sue Freund watched her young daughter dash around the playground in a rousing game of chase.
This was years ago, when Sarah Freund was still in grade school, all arms and legs and tan from summer. The kids circled the park, kicking up dirt while they laughed and screamed.
“My Sarah had no clue all the other kids were actually running away from her, calling her a monster,” Freund said. “She was so desperate for friends and so happy running, I didn’t stop the game.”
Sarah, now 18, is at the kitchen ta-
ble in her mother’s apartment, listening to her tell the familiar story that symbolizes what she has gone through all her life due to a facial-deforming condition called Treacher Collins syndrome.
The recent high school graduate is soft-spoken, almost Zen-like, two cats purring around her feet. A table top Christmas tree sits nearby and the TV is tuned in low to some daytime talk shows.
Sarah could easily share one tale after another of exclusion and even repulsion inflicted by other people upon her. Instead, she picks just one more example, then turns the discussion to better match her positive outlook on life.
“Mom, there was also the time a teacher offered anyone in the class some pizza if they would pick me as a partner for a project,” Sarah said. “Still, I was never picked.”
Treacher Collins is a congenital facial disorder that affects about one in 50,000 people. Most affected individuals have underdeveloped facial bones, absent or small ears and some have cleft palates. In severe cases airways can be restricted, causing potentially lifethreatening respiratory problems.
But the experience of people who have craniofacial differences (the preferred term, rather than “deformity”) is changing — gaining nationwide attention as a result of the success of the film “Wonder.” Based on a best-selling young adult novel by R.J. Palacio, the story has as its protagonist Auggie Pullman, a 10-year-old boy with an unspecified condition that, much like Sarah, causes him to look different.
The inspirational message spread by its main character is simple: “#ChooseKind.”
The story has been woven into school anti-bullying curriculum across the country, and has suddenly opened a new world for the Fond du Lac teenager, who for so long has tried to hide herself away.
“I first heard that the book ‘Wonder’ was the choice for this year’s community read at the library. That’s when thought to myself, I am willing do this. I can talk to people about what it has been like for me,” Sarah said.
Just recently, students at Sabish Middle School in Fond du Lac gave Sarah a standing ovation after she shared her story at a school-wide assembly. She also appeared as a guest speaker for middle-schoolers in the Oakfield School District, and is scheduled for visits at more schools throughout the area.
In “Wonder,” Auggie says everyone should have the opportunity to get a standing ovation, once in a lifetime, Sabish principal Torrie Rochon-Luft points out.
“The kids did just that for Sarah, all on their own. Everyone had tears in their eyes — students, teachers and most of all Sarah,” Rochon-Luft said.
A childhood spent in and out of hospitals
After Sarah’s birth on March 23, 1999 at Community Memorial Hospital in Menomonee Falls, Sue Freund would not see her daughter for four days.
The infant was essentially born dead, without a heart-rate. She was revived, placed on a ventilator to breathe, and transferred to St. Joseph’s Hospital and then on to Children’s Hospital of Wisconsin — both in Milwaukee.
“We had her baptized right away. The doctors told me my newborn would grow up to be deaf and blind and that I would never be able to care for her,” Sue said.
A few days later, while talking with a geneticist, the new mother learned that Sarah wasn’t blind, had normal intelligence (typical of people with Treacher Collins), and could live a full, normal life.
Normal in some sense of the word.
Sarah received a tracheotomy at 10 days old because of her narrow breathing pathways, described as like “trying to breathe through a soda straw.” At three weeks of age, Sue had to learn how to feed her tiny daughter, who could not eat normally, through a feeding tube.
At five weeks, Sarah was finally released from the hospital and sent home to Fond du Lac, along with a slew of medical equipment required to care for her. (Sue is now divorced from Sarah’s father, Randy Freund; Sarah also has an older brother, Eric Freund.)
So far, she has endured 17 surgeries, including cleft palate repair, surgery to lengthen her jaw — a long process that includes turning metal screws attached to her head, a half-turn each day — major cranial facial repair to reduce the size of her head and a hearing aid implant.
Sue pulls out photos of Sarah at different ages, during various hospital stays, her head wrapped in bandages. Each time her daughter had surgeries that changed her head shape or face or jawline, the difference was disorienting, Sue said, and the family would need time to adjust to her new look.
“I guess I remember just trying to stay calm through all of it because I knew the surgeries would help me have a better life,” Sarah said. “When I was little my head was so big and heavy, I wasn’t even able to crawl.”
‘I was always set apart’
In school, Sarah was always accompanied by a nurse to help manage her airways and eat, using the feeding tube. Having someone to sit with in the lunchroom and ride the bus with her on field trips helped her feel less alone.
As Sarah got older, she eventually carried a “go bag” full of medical supplies to all of her classes and was able to attend high school on her own the last two years.
“I looked forward to going to school, I liked to learn, but I was always set apart,” Sarah said. “No one would directly come and bully me. They just left me out of everything.”
Some children would scream or cry when they saw Sarah, Sue said.
Once, while sitting in a doctor’s office, a mother told her son who was staring, loud enough for everyone to hear: “Stop looking at people who are different than you.”
Sometimes, enough is enough, Sue said, and that day, she lost her patience.
“When we walked past them, I shielded Sarah’s eyes and said in my own strong voice: ‘Don’t look at them, they are different than you.’”
As she got older, Sarah watched from afar as other teens shared in all the memory-making moments that happen during high school.
Around homecoming time, Sarah and her mom stopped at A&W for a cold root beer and Sarah noticed six girls all dressed up, helping each other fix their hair. She recalls thinking at the time she would never get to have that experience.
The next year, the school psychologist arranged for Sarah to attend homecoming with a group of girls. “Of course I would like to go,” Sarah told her.
“I got all dressed up and when I got there everyone made it clear that no one wanted to be with me. After four hours I called my mom crying, asked her to pick me up,” Sarah said.
Making a difference
“If you have the choice between being right, or being kind, be kind. More and more, that’s become my motto.” Sarah Freund
These days, Sarah shares her stories with students to let them know how different her own life could have been if someone, anyone, had reached out to her, let her feel a part of something.
Neelie Holzmann, a 12-year-old at Sabish, said she herself sometimes feels different because she has ADHD. Not everyone understands her “energetic” personality.
“Like everyone else, it took me by surprise when I first saw Sarah,” Neelie said. “But the way she explained things was so sweet, that what matters is on the inside, and we should not judge a book by its cover, just like the boy in ‘Wonder’ says.”
“Wonder” has heightened awareness and changed the lives of children nationwide who have craniofacial differences, said Erica Mossholder, executive director of the Children’s Craniofacial Association.
The organization, based in Dallas, Texas, has been trying to create a national conversation for 25 years, Mossholder said. Now, they can’t keep up with the demand for lesson plans and recently mailed out 1,500 educator packets. Teachers en masse are even ordering T-shirts for their students that read: “Change the world, choose kind.”
“While ‘Wonder’ is a fictional story we want to give the world real stories, and have about 45 students across the country with facial differences like Sarah, who are willing to go out in the world and spread the message that they should be included too,” Mossholder said.
After Sarah’s presentation at Sabish, a student approached her to offer an enthusiastic high-five.
“It felt amazing, like I was finally a part of something,” Sarah said. “And the best part is the kids with disabilities said I made them feel less alone.”
In January, the teen will begin attending the hospitality program offered through Fox Valley Technical College in Appleton, with the ability to finish her general classes first at Moraine Park Technical College in Fond du Lac.
Mother and daughter plan to open up a bed and breakfast together in the future.
At some point, Sarah could choose to undergo cosmetic surgery, but Sue does not want her to go through any more pain in life if she doesn’t have to.
“I like the way I look,” Sarah said.
While the Freunds are firm about accentuating the positive, mother and daughter still allow themselves days to feel down.
“You need that time to feel sorry for yourself, to say this really sucks, because it’s supposed to suck. We get it out of our systems, and then we move forward and look to tomorrow,” Sue said.
Sarah says she may just develop a knack for showing people how to look at others “from the inside out.”
“If you have the choice between being right, or being kind, be kind,” she said. “More and more, that’s become my motto.”