Children with profound disabilities and medical complexity are entirely dependent on their caregivers for all aspects of life. In the Netherlands, many of these children live at home. This paper contributes to understanding of parents’ experiences by integrating findings from sub-studies that explored, from their perspectives, the challenges of navigating healthcare and keeping balance in day-to-day family life. Elements of parents’ lifeworld in which they struggle to keep balance are handling medical complexity, coping with multidimensional weariness, parenting siblings, fostering social connectedness, dealing with uncertainty about the future, repairing bureaucracy and scattered services, overcoming boundaries within interactions with providers, and managing financial challenges. The idea of ‘recreating habitat’ highlights how care services can be improved when shaped by parents’ perspectives. Instead of addressing isolated care needs, this approach encourages providers to consider the dynamic interplay of influences and focus on what parents need to keep or regain balance when dealing with challenges. In this context, assistive and enabling technologies should be carefully designed with families in mind. Such technologies should not only meet the child’s needs and help protect parents’ bodies, but also enhance the quality of shared family time by improving coordination across complex care networks. When developed in alignment with parents’ realities, technologies can strengthen parents’ sense of agency and wellbeing. It is therefore crucial to incorporate parents’ insights into the design process to ensure that technology becomes a meaningful part of the ‘recreating habitat’ approach, ultimately supporting families in keeping balance and resilience.