Every Three Hours

Abstract

Every Three Hours is a memoir about raising my son Patrick who has two rare medical conditions--Glycogen Storage Disease 1a (GSD1a) and Mast Cell Activation Syndrome (MCAS). As I analyze the events in Patrick’s life when my spouse and I educated and nurtured him, it raises the central question for my research: how can parents of chronically ill children foster safety and independence for their children? This master’s project is multi-disciplinary in that it incorporates primary and secondary data as well as creative writing. Using first-person narrative, I explore how my husband and I navigated the uncharted medical and parenting challenges of GSD1a and MCAS. Secondly, woven into this primary research is data exploring the medical and psychological aspects of GSD and MCAS. Additional insights come from memoirs of parents who have walked down a similar road. As I chronicled Patrick’s life, I realized that this project has become not only a story of raising an ill child to become independent. This memoir has become an awareness of life choices I had to make once I had a compromised child. This memoir is also about my false sense of control as a young adult and the loss of that control. Additionally, this account acknowledges that almost all parents love their chronically ill children and only want the best for them. The reality of raising an ill child is that it takes health insurance and money—not moral superiority.