What happened to her baby felt so unreal, she wrote a fairy tale about it.
Lenore Eklund's 'Release' is a 185-page graphic novel treatment of her daughter's medical challenges
It all started with a sketchpad and a surreal motherhood experience.
Lenore Eklund, an erstwhile documentary filmmaker, began by drawing pleasant little doodles while somewhere nearby her daughter’s skull was opened.
It was 2017 and Eklund was waiting in a hospital café for her 1-year-old to come out of neurosurgery to correct hydrocephalus, a type of swelling of the brain.
She finished her doodle of pretty boats and waves but wasn’t satisfied. She needed to draw something more real, something less pretty.
So Eklund drew a cartoon of the café she was in. The other people — medical students, health professionals and the like — were talking about their careers, or love lives. It seemed absurd that she could be going through so much stress and heartache while everyone around her was having a normal day. Drawing a cartoon about the situation helped her feel better.
“When situations seem so otherworldly, it was almost as if we entered into a fantasy world,” she told Medical Motherhood this week. “And so, telling this story through fairy tale is the way that made sense.”
That’s the idea behind Eklund’s new graphic novel — ‘Release.’ With wit and humor, the Portland, Oregon mom takes the reader through the drama of her daughter’s birth and subsequent medical challenges as if it were a fairy tale. The two parents encounter a troupe of bizarre characters while their baby is locked away under a spell. The book is available now from Amazon and, soon, to libraries and bookstores through their Kindle Direct Publishing platform.
Charlee, now 5, has multiple disabilities. She uses a wheelchair to move and technology to communicate.
Eklund recalled the time in 2016, when her daughter was a few weeks old, that she and her husband discussed g-tube surgery with her doctor. Eklund and her husband, who owns The Baker’s Mark restaurant in Portland, asked the surgeon how common the procedure was.
“He got very giddy about it,” Eklund recalled. He said: “‘I do this all the time. It’s my bread and butter.’”
The cutting of a hole in her newborn daughter’s tiny stomach to install a plastic tube so that her baby didn’t starve to death — described to her in personal profit terms.
“That sticks with you,” Eklund said. “Everything that happened was so cartoony.”
At first, Eklund tried to return to her roots and film some of her experiences, but that proved impossible with the level of care that her daughter needed. Eklund, who directed Time As Money (2014) and Food As Medicine (2016), instead turned to drawing. That was something she could still do in the in-between times: waiting for a pump feeding to finish, or when Charlee was asleep.
“Trying to get something done, too, while you’re caregiving, it’s — I dunno — glacial pace,” Eklund said.
For three years, she sketched and colored. Then she scanned the pages into the computer. She cleaned up the smudges, replaced the written captions with type.
“The actual doing it was so enjoyable,” she said.
Eklund’s favorite page is one she drew about the time they had to call 9-1-1, the day after Charlee’s release from the NICU. The page — much like her living room that night — is dominated by figures in blue, EMTs, while the patient in question, Charlee, is so tiny in Eklund’s arms.
“I think it’s my way of taking control of the story too,” she said, “of all the things that happened.”
Eklund counts among her inspirations a graphic novel called Hey Baby by Breena Bard. Before Charlee was born, Eklund read a lot, but after, she couldn’t.
“I would read a paragraph and then at the end I didn’t know what I had just read,” Eklund said.
So graphic novels just made more sense. She found a whole subgenre of graphic treatments of medical journeys — miscarriage, cancer, chronic disease.
“It was really nice to read those journeys and to see how people process the difficult things that people went through,” she said.
Eklund released an early version of the story in Mutha Magazine, which published it in December 2018. ‘Release,’ at 185 pages, goes into even more detail.
Eklund, who understandably doesn’t have much time for marketing or promotion, has modest expectations for the book. But she hopes that it finds its audience.
“This is very much a project about healing,” she said. “I hope it’s a connector — for other families, and for me as well. You know, caregiving is so isolating. It is nice to have something to connect with other people about.”
Register for a conversation with the author, hosted by United Cerebral Palsy of Oregon and Southwest Washington. The event, Oct. 7 at 7 p.m., will be held over Zoom and registrations are required.
Medical Motherhood’s news roundup
• From The New York Times: “Pfizer and BioNTech submit data they say show shots are safe in 5- to 11-year-olds.”
Just over a week ago, Pfizer and BioNTech announced favorable results from their clinical trial with more than 2,200 participants in that age group. The F.D.A. has said it will analyze the data as soon as possible. Dr. Peter Marks, the agency’s top vaccine regulator, said recently that barring “surprises,” an authorization could come in “a matter of weeks, not months” after the companies submitted data.
• From Humans of New York: “Loryn Brantz”
I knew right away something wasn’t right. When they plopped her on my chest, she was amazing, and alive, but she looked like a skinny pink frog. The only way to feed her was to drip milk in her mouth, 24/7. Those first weeks I was getting such little sleep that I began to have hallucinations: babies on the ceiling, babies on the wall. My husband’s job was to hunt down the diagnosis, while I kept her alive….
• And, one year ago this week (has anything changed??), from Rolling Stone: “Amid Covid-19, Parents of Special-Needs Kids Face a Dilemma”
This is to say nothing about the impact that the lack of services has had on parents of special needs children and their own welfare and mental health. Though research shows that 46% of parents of typically developing children report having “high” stress during the pandemic, that stress is likely exacerbated for parents of special needs children, who often have to balance being teachers, caregivers, employees, advocates, and therapy providers all in one. “They have told me they feel even more isolated [than they did before the pandemic],” says Amy Brin, executive director and CEO of the Child Neurology Foundation. “They feel they have to jam the system even more to get the basic needs their children serve.”
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