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Parents of children with Moebius syndrome may benefit from learning fro the perspective of other parents and caregivers of children with similar conditions and serious illnesses. Below are a few books to consider adding to your reading list. Also be sure to check out the sections on books for children and books for adults with Moebius syndrome for more reading ideas.
Born Extraordinary: Empowering Children with Differences and Disabilities
by Meg Zucker
TarcherPerigee, 2023
Author Meg Zucker was born with a genetic condition called ectrodactyly, which leads to one finger on each hand, shortened forearms, and one toe on each foot. She passed this condition on to her two sons, and also raised an adopted daughter with a medical condition. Born Extraordinary helps parents of children with differences and disabilities relinquish their instinctive anxieties, embrace their new normal, and find joy in watching their children thrive.
Demystifying Disability: What to Know, What to Say, and How to be an Ally
by Emily Ladau
Ten Speed Press, 2021
A friendly primer on how to appropriately think, talk, and ask about disability, written by an author with a disability herself. Selected by both NPR and Booklist as one of the best books of the year.
By Heather Lanier
Penguin Press, 2020
Award-winning author Heather Lanier’s memoir about raising a child with a rare syndrome and challenging a child in a world that sometimes rejects our children.
Normal: A Mother and her Beautiful Son
By Magdalena Newman with Hilary Liftin
Harvest, 2020
These two new books add to the small number of books that exist about craniofacial conditions. Normal, A Mother and Her Beautiful Son was written by Nathaniel’s mother about their family’s journey with Nathaniel who was born with Treacher Collins syndrome with severe symptoms. Normal, One Kid’s Extraordinary Journey was written by Nathaniel and his mother and contains some (humorous) illustrations. They tell the same story, one for adults and the other for younger readers. The target audience is ages 9 to 12; though a younger child with a craniofacial condition and familiar with surgeries could also be interested in Nathaniel’s book, either reading it or having it read to them.
The author chronicles their family’s extraordinary situation in which serious health crises occurred often. Some examples include their experiences dealing with many high-risk surgeries and the constraints of both a gastrostomy and tracheostomy tube since Nathaniel’s infancy and many high risk surgeries. This is while she herself has a second child, cancer and a recurrence, many moves to different states and frequent job changes for Nathaniel’s father. Despite these uncommon and difficult challenges, the family is resilient, upbeat, and thankful; they retain a sense of humor, especially Nathaniel. Of special interest is how the book and then the movie of Wonder positively affected Nathaniel and the family. Nathaniel explains how wonderful the family’s dogs are, how he usually appreciates having his brother, and that he doesn’t feel defined by Treacher Collins.
Normal, One Kid’s Extraordinary Journey
By Magdalena Newman, Nathaniel Newman, and Neil Swaab
Clarion Books, Reprint 2021
The young reader’s companion to Normal.
The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses
Mousumi Bose, Ph.D., Kimberly Haugstad, MBA; and Theresa J. Smith, AS, LPN, CCRC
Caregiving.org, 2021
Covering nearly 100 topics related to caregiving, this guidebook is intended to help caregivers navigate the challenges of rare and serious medical conditions. Created by Global Genes and the National Alliance for Caregiving.
By Rachel Callander
Mary Egan Publishing, 2015
This is an award-winning book featuring beautiful photography of many children with genetic conditions along with descriptions of the children by their parents and the book’s author. It celebrates all the children and was inspired by the author’s daughter’s life. Find the TedXAuckland talk by Rachel Callander on the book’s website.
The Boy Who Smiles With His Heart (A Moebius Syndrome Story)
By KiOwana E. Phillips
Lulu.com, 2014
This is a story about a mother with a son born with Moebius syndrome among other medical issues. The book takes you through the first nine years of his life, experiencing many emotions as you read. Each page will leave you wanting more. Take a journey through the eyes of this mother as she tells you about the boy who smiles with his heart. The author, KiOwana Phillips, is on the board of the Moebius Syndrome Foundation.
The Still Point of the Turning World
By Emily Rapp Black
Penguin Publishing Group, 2014
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.
Far From the Tree: Parents, Children, and the Search for Identity
By Andrew Solomon
Scribner, 2013
Solomon is an LGBT author who set out to understand his own complicated relationship with his father. As he does so, he interviews families and parents with children who are “far from the tree,” that is, different from their parents in some manner. An all-encompassing book that traverses deaf culture, Down syndrome, autism, LGBT communities, and more, this book helps parents understand the range of reactions they can have to a child who is different. Readers may walk away with a better understanding of their approach to parenting a child with a disability or difference.
Babyface: A Story of Heart and Bones
By Jeanne McDermott
Penguin Books, 2001
When Jeanne McDermott’s second child, Nathaniel, was born with Apert syndrome—a condition that results in a towering skull, a sunken face, and fingers webbed so tightly that hands look like mittens—she was completely unprepared for it. In this extraordinary memoir, McDermott calls on her dual roles as science journalist and mother to share her family’s traumatic yet enriching experience.
Children With Facial Difference: A Parent’s Guide
by Hope Charkins
Woodbine House, 1996
This book is out of print but may still be found on Amazon and in some libraries. The book was written to help parents cope with the diagnosis of a child with a facial difference and includes some contributions by parents of children with Moebius syndrome.
Change How You See, See How You Change
by Rick Guidotti
Rick Guidotti is a photographer and founder of Positive Exposure, a nonprofit dedicated to photographing people with facial and physical differences. This is a coffee table book of his work. Order directly from Positive Exposure’s website.