https://knowrare.com/latest-p1/books-for-rare-disease Since Alden’s diagnosis I have been consuming books at an personally unprecedented rate. Part distraction and part self-help, I have found reading the experiences and wisdom of others to be immeasurably important as I find strength to survive and thrive despite being forever in the grip of a rare diagnosis. The books I have been drawn to fall into three categories: memoirs, resilience, and mindfulness. In memoirs I have been able to myself in the stories of others. I have been guided by their experiences in deeply personal ways. As I looked to consciously shape my own journey I became fascinated with the concept of post-traumatic growth, and focused on strategic ways of cultivating resilience. And finally, I found mindfulness and a growing sense of spirituality as central to finding grace and acceptance in my son's diagnosis and our new family trajectory. These books are the ones that have affected me most powerfully this year. I would love to hear any recommendations from you! MEMOIRS Raising a Rare Girl: A Memoir by Heather Lanier This is a BEAUTIFUL autobiography by a mom raising a girl with rare genetic deletion. She was a poet before she became a mom, and the writing is truly extraordinary. This book has been shared between friends and family members, and has been an accessible way for others to understand a bit about our journey. Jabberwocky: Lessons of Love from a Boy who never spoke by Dr. Steven Gardner This physician father’s memoir speaks to the uniquely TENDER CONNECTION of parent and child, the uplifting communities within special needs, the act of giving back to make meaning, and the spiritual journey in bereavement. Schuyler’s Monster: A Father’s Journey with his Wordless Daughter by Robert Rommel-Hudson With nimble wit, a father tells his story of LEARNING TO TRUST and heal himself to become a TENACIOUS advocate for his daughter through diagnosis and disability. Harnessing Grief: A Mother’s Quest for Meaning and Miracles by Maria J. Keralas A warrior mother’s courageously honest account of unspeakable loss, she spares no detail in her generous and valiant descriptions of defiant determination, bitter rage, and profound love. RESILIENCE Bouncing Forward: transforming bad breaks into breakthroughs by Michaela Haas This is the best sort of self-help book for people facing trauma. Enjoy some awesome perspective through incredible stories of post-traumatic growth paired with scientifically validated strategies for sustained strength. Rising Strong: How the Ability to Reset Transforms the Way We Live, Love, Parent, and Lead by Brene Brown Brene Brown is a joy to read. While sickness and trauma are not central themes, the lessons here are valuable to sustaining a family through all the curveballs that come our way. Option B: Facing Adversity, Building Resilience, and Finding Joy by Sheryl Sandburg & Adam Grant Part memoir, part strategic post-traumatic advice, this book is the most easily digestible book about grief I’ve ever read. MINDFULNESS True Refuge by Tara Brach An authentic and unpretentious spiritual guide, Tara makes mindfulness accessible to all. Her website and podcasts are also wonderful resources. Comfortable with Uncertainty by Pema Chodron A brief, approachable and often humorous collection of wise words for today’s world. Practicing the Power of Now by Eckhart Tolle A spiritual classic, teaching grace, ease and lightness. The Wild Edge of Sorrow: Rituals of Renewal and the Sacred Work of Grief by Francis Weller Essential guide for navigating the deep waters of sorrow and loss in this lyrical yet practical handbook for mastering the art of grieving.