A mother of three young girls in Geneva, Anitra Rowe Schulte has developed a familiar habit.
“My kids and I were constantly going to the library,” Schulte says. “We were coming home with giant stacks of library books.”
But the main characters of these books did not speak to all of his family.
So she wrote her own book, “dancing with daddy“, about Elsie, a little girl with a rare disease who has a feeding tube, uses a wheelchair and communicates via a device with drawings, symbols and words.
“Picture books can look a lot like windows and mirrors,” says Schulte. “It can be a window into our experience for people who don’t have children with disabilities, and it can be a mirror for children who have disabilities.”
Schulte’s motherhood pilgrimage began days after Christmas in 2011, when her husband, Dan, drove through a flurry of heavy snowflakes to the hospital where she was to give birth and cradle her newborn daughter, Elsa. , in her arms.
“They handed it to me and I could hear them repeating the word chromosome over and over again,” says Schulte. “She was our firstborn, so we were like, ‘Let’s go.'”
Born at full term, Elsa weighed just 4 pounds and 15 ounces, but it would be another eight days before her parents received an official diagnosis of their baby’s condition. Elsa, now 10, was born with Wolf-Hirschhorn syndrome, a genetic condition caused by a missing piece of genetic material near the end of the short arm of chromosome 4, which surprised and bewildered the parents in a world of unknowns and uncertainties.
By spending a day with various doctors, they learned that Wolf–Hirschhorn syndrome symptoms often include facial features 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 d other problems.
“It was just a great day,” recalls Schulte.
Since then, the mom has immersed herself in the world of children with disabilities, speaking to schools and other groups, and recently became the parent programming coordinator for The Nora Project, a charity based in Highland Park that promotes disability inclusion and empathy in schools. A graduate of the University of Missouri-Columbia 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 children, to see our whole family in a book,” says Schultewhose book received a Kirkus Reviews star and was named Best Picture Book 2021 by Kirkus. Much 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 transparently presented as just another aspect of family life,” reads a rave review from Kirkus, noting a scene where Elsie’s sisters use chopsticks to swallow noodles. slippery, as their father pushes Elsie’s liquid meal through a feeding tube.
Elsa had her feeding tube when she was 7 months old. Her sisters, Cecilia, 8, and Lola, 7, treat her with the respect usually enjoyed by a big sister, their mother says. They push her in a saucer and pedal their bikes on family outings where Elsa rides in a bike trailer.
Elsa is mostly non-verbal, but she has occasionally said simple words such as “go” or “mom”. “The other day, she said her name,” says her mother. Elsa usually nods and leans forward to indicate “yes”, while turning her head to the side means “no”.
During his weekly physiotherapy sessions at Northwestern Medicine Marianjoy Rehabilitation Hospital at Wheaton, Elsa practices touching devices with both hands to activate lights and noises. She wears pink and purple glasses of her choosing, can walk with a walker, and stand for short periods.
She doesn’t eat food, but she likes to taste things.
“The other night she ate fries, and she just licked off the salt and was super excited,” Schulte said.
When Ginny Girten, Elsa’s pediatric physical therapist of five years, turns up the music, Elsa moves while being supported by either Girten or Corey Lepoudre, a 26-year-old physical therapy student from Elgin who will be graduating this month from the Midwestern University at Downers Grove.
“She doesn’t 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 growing up, we want her to be involved in it more,” Girten said. “She should have a life through therapy. Therapy shouldn’t be her life.”
Sometimes Elsa is reluctant to sit down or stand up, or won’t respond when asked if she wants the music to play.
“She’s not in the mood today,” Girten said. “I don’t 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, the breeze and the misty spray of a tube ride, writes Schulte in one of the stories at wolfhirschhorn.org.
There’s so much equipment and care that comes with having a child with Elsa’s needs, but “Dancing with Daddy” explains how these extraordinary measures become a normal part of life for the Schulte family.
“Anitra illustrated this so well in her book,” Girten says, shaking her head in amazement. “I don’t know how a mother of three had the time to write such a beautiful book.”
Schulte will be celebrating this Mother’s Day with her husband, three “very blond” daughters, church service, great 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 had trouble getting Elsa to breastfeed or take a bottle. But their love has not changed.
“I knew my path was different than all the other moms and babies around me,” Schulte says. “But I was so deeply connected to my daughter. We cried together, sang together, huddled together and worked together. We took one step at a time. We still do.”