An Unflinching Look at Parenting Undiagnosed Special-Needs Kids
Jul 24, 2019
Colbie, age 8, and Lleyton, 5, have normal brains. At least according to the numerous MRI scans they’ve undergone throughout their short lives. No one can explain why neither child can walk, or why neither child has ever been able to speak a word.
Heath and Mariel Krakowiak, Colbie and Lleyton’s parents, have had them evaluated by countless specialists. The kids have been through the National Institutes of Health Undiagnosed Diseases Program, during which their genomes were sequenced. The only thing doctors can tell the Krakowiaks is that each of their children has an individual genetic mutation about which nothing is known. No answers or diagnoses are in sight.
At home, Heath and Mariel struggle to care for their severely disabled children, who cannot communicate what ails them and often throw tantrums. The couple have settled into a routine characterized by constant vigilance, soothing interventions, and an infinite reserve of patience. Their everyday life is captured in Dave Adams’s short documentary The Unconditional, an unflinching and ultimately heartrending look into the challenges that special-needs kids and their parents face behind closed doors.
Adams hoped to lift the veil on the experiences of parents raising children radically different from themselves. “I really wanted to linger in the uncomfortable,” Adams told me. “We may see families with special-needs kids at the grocery store or on the sidewalk, but what’s it like at home when the curtains are drawn?”
Through his wife’s friendship with the Krakowiaks—she and Mariel were college roommates—the filmmaker was granted the access to make the movie. “They trusted me to be in their home, documenting very intimate personal moments,” Adams said. “I think it was cathartic for them to open their doors and let the world in a bit to the daily joys and struggles of raising special-needs kids.”
In the Krakowiak household, even the simplest tasks are rendered difficult. “Everything is … different,” Heath says. “Everything is not the same as other people.” When one child is calm, the other always seems to be agitated. Neither sleeps through the night. Trips to the doctor are frequent and exhausting. Moments of respite are few and far between. Yet Heath and Mariel approach each situation with equanimity and show their children unconditional love.
In between immersive scenes of daily life, which Adams lenses with sensitivity and blue-tinged hues, the parents reflect on their situation. Their grief, ever so quiet, is nonetheless palpable.
“I had this dream when we were starting a family, thinking about what life was going to be like when this baby came into the world, and the things that we would do together,” Mariel says wistfully in one scene.
“We’re parents in the sense that we created Colbie and Lleyton, but I don’t always feel like a parent,” she later admits. “I feel more like a caregiver.”
But the Krakowiaks’ lives are also punctuated by triumphs and moments of genuine joy. It’s evident that nothing makes the parents happier than watching their children accomplish something independently, laugh, or otherwise engage with the outside world.
Just a week prior to shooting the documentary, Adams found out that his wife was pregnant with their first child. “Filming with Heath and Mariel immediately afterward was a master class in how to be a good parent—patience, empathy, kindness,” he said. “And unconditional love.”
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Author: Emily Buder
About This Series
A showcase of cinematic short documentary films, curated by The Atlantic.