Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports

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Presented with empathy and humor, Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports gives parents the tools to conquer the stuff, so that they can spend less time filling out forms, and more time loving their children exactly as they are. With over a decade of experience navigating these systems for her own child, author Kelley Coleman presents key information, templates, and wisdom alongside practical advice from over 40 experts, covering topics such as diagnosis, working with your medical team, insurance, financial planning, disability rights and advocacy, and individualized education plans.

Breath Taking: A Memoir of Family, Dreams, and Broken GenesYou Want To

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Jessica Fein's daughter, Dalia, was diagnosed with a rare degenerative disease at the age of five. Despite this, inspired by Dalia's zest for life, Fein and her family learned to embrace the present when the future couldn't be fixed. "Breath Taking" is a heartfelt memoir detailing their journey of loving and caring for a terminally ill child. It's about being a relentless advocate, a calm presence, and finding joy amid sorrow. It's more than a memoir; it's a guide for those facing unimaginable challenges.

Normal Broken: The Grief Companion for When It's Time to Heal but You're Not Sure You Want To

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In Normal Broken, Kelly Cervantes isn’t trying to tell you what to do, how to feel, or the right way to heal. She’s also not flinging sunny thoughts, vibes, and prayers at you. After losing her daughter to epilepsy, she knows that grief is many things. It’s weird. It sucks. It’s all-encompassing. Something everyone will have to deal with. But never linear. Just as what we are grieving varies, so do our journeys to process it.

Soundtrack of Silence: Love, Loss, and a Playlist for Life

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Matt Hay, as a child, coped with his hearing loss through clever workarounds. His condition went unnoticed, even by the school nurse. When he couldn't enter West Point due to his worsening hearing caused by a tumor, he turned to creating a personal soundtrack tied to his memories. This memoir, "Soundtrack of Silence," weaves iconic songs into a story of loss, disability, and a unique, universal love story.

Bump In The Road: 15 Stories of Courage, Hope and Resilience with Serious Illnesses

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Explore the power of human courage as 15 people confront their fears, challenge their beliefs, and take courageous steps toward personal and spiritual growth. These stories beautifully illustrate the transformative power of embracing change, even when it feels like a detour..

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Shared Struggles: Stories from Parents and Pediatricians Caring for Children with Serious Illnesses

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This book tells true and poignant stories from both sides of the physician-patient/parent relationship and provides a unique glimpse into how parents and physicians think, feel, and interact. The stories are grouped under four sections: Hope, Compassion, Communication, and Trust. Each section includes stories contributed by parents from all across the United States and by pediatricians practicing at many of the best children’s hospitals throughout the country.

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Butterflies and Second Chances: A Mom's Memoir of Love and Loss 

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The world Annette Hines knew exploded when her infant daughter Elizabeth was diagnosed with mitochondrial disease--a degenerative, life-limiting illness. Annette's joy quickly turned to apprehension and she knew nothing would ever be the same again. Annette and Elizabeth's powerful story provides hope, solace, and a path forward for parents of special needs children, and it will resonate with families everywhere.

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The Still Point of the Turning World

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What does it mean to be a success? To be a good parent? To live a meaningful life? Emily Rapp thought she knew the answers when she was pregnant with her first child. But everything changed when nine-month-old Ronan was diagnosed with Tay-Sachs disease, a rare and always-fatal degenerative disorder.  He was not expected to live beyond the age of three. Rapp and her husband were forced to re-evaluate everything they thought they knew about parenting and to learn to parent without a future.

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Peach: Celebrating Life in the Shadow of Death

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PEACH - written in lyrical, soulful prose and poetry by Jenevieve 'Peach' Woods - is a heartfelt account of her life as the invisible girl, shunned because she is afflicted with a life-altering disease. Her book is part of her mission to 'celebrate our differences, and to treat each other with kindness and dignity'. 

Letters to Jacob: Grieving the Loss of a Child

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Maria Hopfgarten's son Jacob was born on January 31, 2006. He was the most perfect baby boy she had ever seen. But Jacob had devastating health issues, culminating in a diagnosis of mitochondrial disease, a fatal condition.  In the ten short years of Jacob's life, Maria found strength in blogging about Jacob's life. Her posts have been gathered into this book along with Maria's tips for parents coping with their own grief of losing a child.

You Are Not Alone: An Encouraging Coloring Book for Mothers and Caregivers of Children with Special Needs

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You Are Not Alone” is the main theme of this coloring book, designed specifically for mothers and caregivers of children with special needs. The art of coloring has been studied and has been found to relax the mind, reduce anxiety, and provide stress relief. These coloring pages also incorporate encouraging quotes and phrases that specifically speak to those raising children with special needs.

Chasing My Cure: A Doctor's Race to Turn Hope into Action

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The powerful memoir of a young doctor and former college athlete diagnosed with a rare disease who spearheaded the search for a cure—and became a champion for a new approach to medical research.

One in a Billion: The Story of Nic Volker and the Dawn of Genomic Medicine

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The breathtaking story of a young boy with a never-before-seen disease, and the doctors who take a bold step into the future of medicine to save him—based on the authors’ Pulitzer Prize–winning reporting. One in a Billion is an unforgettable tale of the lives that converged to launch a medical revolution. As pioneering geneticist Mary-Claire King pronounced upon learning Nic’s story: “It was as if one had heard about Case Zero of AIDS and the cure, all at once.”

In Shock (My Journey from Death to Recovery and the Redemptive Power of Hope)

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A first-person account from a young critical care physician describes how toward the end of her medical training she suddenly became a patient fighting for her own life, revealing how her experiences exposed her to flaws in today's care standards and how to better embrace the emotional bond between doctor and patient.

Permission to Mourn: A New Way to Do Grief

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Tom Zuba is a life coach, author and speaker teaching a new way to do grief to people all over the world. His teachings are based on the knowledge, wisdom and tools he continues to gain as he learns to live with the death of his 18-month-old daughter Erin in 1990, his 43-year-old wife Trici in 1999, and his 13-year-old son Rory in 2005. Tom offers those living with the death of a loved one the tools, knowledge, and wisdom to create a full, joy-filled life.

Man's Search for Meaning

 

Psychiatrist Viktor Frankl's memoir has riveted generations of readers with its descriptions of life in Nazi death camps and its lessons for spiritual survival. Based on his own experience and the stories of his patients, Frankl argues that we cannot avoid suffering but we can choose how to cope with it, find meaning in it, and move forward with renewed purpose. At the heart of his theory, known as logotherapy, is a conviction that the primary human drive is not pleasure but the pursuit of what we find meaningful. Man's Search for Meaning has become one of the most influential books in America; it continues to inspire us all to find significance in the very act of living.

Option B: Facing Adversity, Building Resilience, and Finding Joy

 

In 2015 Sheryl Sandberg’s husband, Dave Goldberg, died suddenly at the age of forty-eight. Sandberg and her two young children were devastated, and she was certain that their lives would never have real joy or meaning again. Thoughtful, honest, revealing and warm, OPTION B weaves Sandberg’s experiences coping with adversity with new findings from Adam Grant and other social scientists. The book features stories of people who recovered from personal and professional hardship, including illness, injury, divorce, job loss, sexual assault and imprisonment. These people did more than recover―many of them became stronger.