“Nikki McIntosh wrote the book we’ve all needed with the power of retrospect as well as a pithy gaze at her family’s life now. She knows that rare parents enter this rare life at diagnosis but never leave, because our children can’t. Nikki reminds us that the energy of connection will give us endurance, and love will fuel our resilience when we forget to live for ourselves and give everything we can for our child. What I appreciate most about this book is the practical—giving us reminders, heads ups, and answers when we ask what now? In my own Rare Mama journey, I learned as I went alone. I wish I’d had this book earlier.”

Patti M Hall, author of Loving Large: A Mother’s Rare Disease Memoir