An increasing number of children with complex life-limiting and life-threatening conditions are being cared for at home by their parents. Negative impacts on maternal health are now being recognised. This study sought to voice parental experiences to determine what matters most; explore day-to-day decision making and Advance Care Planning; and to inform local service development. Seven mothers from one community nursing service were interviewed using a semi-structured qualitative approach during the Coronavirus disease 2019 pandemic. Seven data-driven themes were identified following six phase thematic analysis: cherishing normality; navigating the system; being proactive; meaningful connections; beginner to expert – and back; they’re not any child – they’re my child; and Coronavirus disease 2019 pandemic. Practice implications include early discussion of what matters most and benefits of written plans to ensure fair access to treatment for children with complex health. Mothers highlighted that sharing their story enhanced their sense of coping and purpose. Increased support at times of vulnerability and permission to explore decisions were highly valued.