Overview
This documentary explores the daily reality and emotional journey of Heath and Mariel Krakowiak, parents raising two severely disabled children with undiagnosed conditions. The film showcases both the constant challenges and small moments of joy experienced by families caring for special-needs kids.
The Krakowiak Family’s Experience
- Heath and Mariel Krakowiak have two children, Colbie (8) and Lleyton (5), both unable to walk or speak.
- Despite numerous specialist evaluations and participation in the NIH Undiagnosed Diseases Program, no diagnosis has been found.
- Both children have unique, unexplained genetic mutations; their MRIs appear normal.
- The parents’ daily routine involves constant vigilance, soothing interventions, and adapting to frequent outbursts and lack of communication.
- Sleep disruptions and frequent, exhausting doctor visits are ongoing challenges for the family.
- Even simple household tasks become significantly more difficult due to their children’s needs.
Parental Reflections and Emotional Impact
- Mariel expresses grief over the loss of her expectations for family life and the activities she imagined.
- She sometimes feels more like a caregiver than a typical parent, highlighting the emotional toll.
- Both parents demonstrate remarkable patience, equanimity, and unconditional love for their children.
- Moments of children’s independent achievement or laughter are sources of genuine happiness and pride.
- The documentary captures both the hardships and the small, meaningful triumphs of daily life.
Filmmaker’s Perspective
- Director Dave Adams was motivated to portray the private reality of parenting special-needs children, beyond public perception.
- Access to the family’s home allowed for an intimate, sensitive portrayal of their experiences.
- Adams’s personal connection through his wife, a college roommate of Mariel, fostered trust with the Krakowiaks.
- Filming the family shortly after learning of his own impending parenthood, Adams gained insight into essential parenting qualities: patience, empathy, kindness, and unconditional love.