As the mother of three young girls in Geneva, Anitra Rowe Schulte developed a familiar habit.
“My kids and I were going to the library constantly,” Schulte says. “We’d come home with giant stacks of library books.”
But the main characters in those books did not speak to her entire family.
So she wrote her own book, “Dancing with Daddy,” about Elsie, a little girl with a rare disorder who has a feeding tube, uses a wheelchair and communicates through a device with drawings, symbols and words.
“Picture books can be a lot like windows and mirrors,” Schulte says. “It can be a window into our experience for people who do not have disabled children, and it can be a mirror for kids who do have disabilities.”
Schulte’s motherhood pilgrimage began a few days after Christmas in 2011, when her husband, Dan, drove through a flurry of thick snowflakes to the hospital where she would give birth and cradle her newborn daughter, Elsa, in her arms.
“They handed her to me and I could hear them saying the word chromosome over and over,” Schulte says. “She was our firstborn, so we were just like, ‘Let’s go.'”
Born full term, Elsa weighed just 4 pounds and 15 ounces, but it would be another eight days before her parents got an official diagnosis of their baby’s condition. Elsa, now 10, was born with Wolf-Hirschhorn syndrome, a genetic disorder caused by a missing piece of genetic material near the end of the short arm of chromosome 4, which came as a surprise and plunged the parents into a world of unknowns and uncertainties.
Spending a day with a variety of doctors, they learned that Wolf-Hirschhorn syndrome symptoms often include facial characteristics such as wide-set eyes and a shorter distance between the nose and upper lip, developmental delays, intellectual challenges, poor muscle development, vision and hearing problems, and other issues.
“It was just a big day,” Schulte remembers.
Since then, the mom has immersed herself into the world of children with disabilities, speaking to schools and other groups, and recently becoming the parent programming coordinator of The Nora Project, a Highland Park-based charity that promotes disability inclusion and empathy in schools. A graduate of the University of Missouri-Columbia’s School of Journalism, she worked as a writer in London, Kansas City and Chicago, and used those talents to write “Dancing with Daddy.”
“It was really important for me, for my kids, to see our whole family in a book,” says Schulte, whose book received a Kirkus Reviews star and was named a 2021 Best Picture Book by Kirkus. To Schulte’s delight, the book, published by Two Lions in New York, is beautifully illustrated by Ziyue Chen, an award-winning artist from Singapore who was born deaf. That alone makes a statement about living with a disability, as does their book.
“Refreshingly, Elsie’s disability is seamlessly presented as simply another aspect of family life,” reads a glowing Kirkus review, noting a scene where Elsie’s sisters use chopsticks to slurp up slippery noodles, while their dad pushes Elsie’s liquid meal through a feeding tube.
Elsa got her feeding tube when she was 7 months old. Her sisters, Cecilia, 8, and Lola, 7, treat her with the respect typically enjoyed by a big sister, their mom says. They push her in a saucer swing and pedal their bikes on family outings where Elsa rides in a bike trailer.
Elsa is mostly nonverbal, but she has said simple words such as “go” or “Mom” at times. “The other day, she said her name,” her mom says. Elsa usually nods her head and leans forward to indicate “yes,” while turning her head to the side means “no.”
At her weekly physical therapy sessions at Northwestern Medicine’s Marianjoy Rehabilitation Hospital in Wheaton, Elsa practices touching devices with either hand to activate lights and noises. She wears pink-and-purple glasses that she picked out, can walk with a walker and stand for short periods.
She does not eat food, but she does enjoy tasting things.
“The other night she had french fries, and she just licked the salt and was super excited,” Schulte says.
When Ginny Girten, Elsa’s pediatric physical therapist for the past five years, turns up the music, Elsa moves while being supported by Girten or Corey Lepoudre, a 26-year-old Elgin physical therapy student who will graduate this month from Midwestern University in Downers Grove.
“She does not always do what I ask, but she understands,” Girten says. “We use a communication device and tell her what we’re doing and let her make choices.”
Elsa does a lot with her parents and siblings at home, “And now that she’s getting bigger, we want her to participate in more of it,” Girten says. “She should have a life because of therapy. Therapy should not be her life.”
Sometimes Elsa balks at sitting down or standing up, or will not respond when they ask if she wants the music playing.
“She’s not in the mood today,” Girten says. “I do not know why. I wish she could tell me.”
Last summer, the family took a vacation with lots of boating time on a lake, and Elsa loved the vibrations, breeze and misty spray of a tube ride, Schulte writes in one of the stories at wolfhirschhorn.org.
There is so much equipment and care that goes with having a child with Elsa’s needs, but “Dancing with Daddy” explains how those extraordinary measures become a normal part of life for the Schulte family.
“Anitra did such a good job of illustrating that in her book,” Girten says, shaking her head in amazement. “I do not know how a mother of three had time to write such a beautiful book.”
Schulte will celebrate this Mother’s Day with her husband, three “very blonde” daughters, a service at church, good food and a family bike ride if the weather cooperates. It will be different from her first Mother’s Day as a mom, when she struggled to get Elsa to nurse or take a bottle. But their love has not changed.
“I knew that my path was different from that of all the other moms and babies around me,” Schulte says. “But I was so deeply bonded to my girl. We cried together, and sang together, and snuggled together, and worked together. We took it one step at a time. We still do.”