The Actuality of Parenting Particular-Wants Youngsters
Colbie, 8 years old, and Lleyton, 5 years old, have normal brains. At least after the numerous MRI scans they did in their short life. No one can explain why neither child can walk or why neither child could ever speak a word.
Heath and Mariel Krakowiak, Colbie and Lleyton’s parents, had her examined by innumerable specialists. The children went through the National Institutes of Health’s Undiagnosed Disease Program, which had their genomes sequenced. The only thing doctors can tell the Krakowiaks is that each of their children has an individual genetic mutation that nothing is known about. Answers or diagnoses are not in sight.
At home, Heath and Mariel struggle to look after their severely disabled children, who are unable to communicate their suffering and who often have tantrums. The couple has settled into a routine that is characterized by constant vigilance, calming interventions and infinite patience. Her everyday life is captured in Dave Adams’ short documentary The Unconditional, an intrepid and ultimately heartbreaking look at the challenges facing children with special needs and their parents behind closed doors.
Adams hoped to lift the veil on the experiences of parents raising radically different children from themselves. “I really wanted to dwell in the uncomfortable,” Adams told me. “We may see families with children with special needs in the supermarket or on the sidewalk, but what is it like at home with the curtains drawn?”
His wife’s friendship with the Krakowiaks – she and Mariel were roommates at the college – gave the filmmaker access to the film. “They trusted me to be in their home and document very intimate personal moments,” said Adams. “I think it was cathartic for her to open her doors and let the world get a little involved in the daily joys and struggles of raising children with special needs.”
In the Krakowiak household, even the simplest tasks are made difficult. “Everything is … different,” says Heath. “Not everything is like other people.” When one child is calm, the other always seems excited. Nobody sleeps through the night. Visits to the doctor are frequent and stressful. Moments of relaxation are few and far between. But Heath and Mariel approach any situation with equanimity and show their children unconditional love.
The parents reflect on their situation between immersive scenes of daily life, which Adams stages with sensitivity and bluish casts. Her sadness, so quiet, is still palpable.
“I had this dream when we were starting a family and I was thinking about what life would be like when this baby was born and what we would do together,” says Mariel wistfully in one scene.
“We are 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 life of the Krakowiaks is also marked by triumphs and moments of real joy. It is obvious that nothing makes parents happier than watching their children do something on their own, laugh or otherwise engage with the outside world.
Just a week before the documentary was shot, Adams learned that his wife was pregnant with their first child. “Filming with Heath and Mariel immediately afterwards was a masterclass in being a good parent – patience, empathy, kindness,” he said. “And unconditional love.”
We want to hear your thoughts on this article. Send a letter to the editors or write to email@example.com.