By people with CMN or a family member
Caring Matters Now has produced the HOW DO YOU C ME NOW? photographic book to celebrate the beauty and lives of all those affected by CMN and inspire the world to embrace visible differences; giving a clear message; love the skin you are in!
Featured within this beautifully presented hardback book are 30 portraits of inspiring children and adults affected by Congenital Melanocytic Naevus (CMN), along with personal stories and coping strategies which aim to improve the self-esteem and confidence of anyone living with any visible difference.
‘HOW DO YOU C ME NOW?’ is a beautiful coffee table book to have at home and, can also be used as an inspiring resource in schools or workplaces for encouraging all ages to embrace their uniqueness, as well as stimulating positive discussion about visible differences.
Here’s the story behind the story: This book was written by a mom of two cuties born only 1.5 years apart. Her second child was born with a large mark called congenital melanocytic nevus covering a large part of her face. The parallels of having a child born without and then one born with a visible difference inspired the creation of this book. As a person who never had to face the world looking differently than her peers, it was eye-opening to experience the stares, comments, and interactions that came with a visible difference. The purpose of this book is to bridge that gap taking a very kid-friendly approach to explain visible differences, kindness, and what to do when you see someone who looks different than you.
My hope is that this book will help the readers to overcome weaknesses and obstacles and will motivate them to live a fuller life. In a world that demands perfection, I feel that this book will interest, amaze, and inspire. My deepest wish would be for this book to help and uplift people born with a giant congenital nevus and all people born with unusual birth defects, disabilities, or deformities of any kind. People, in general, are fascinated by others that are different. I learned very early to be compassionate to the problems of others and to accept my own problems, and then later in life, I decided to live life to the fullest, appreciating each and every day. I am living a completely normal life. In fact, I am living a fantastic life with many adventures which I share in my writing.
The SpottedGurlDiaries is about a girl who lives with a skin condition called Congenital Melanocytic Nevi. This skin condition is a round oval-shaped patch of skin usually referred to as a mole. My book talks about my struggles and how I overcome them.
Shachar is having her 10th birthday, but she’s not celebrating alone. Kuti is celebrating with her – one of many beauty marks decorating Shachar’s whole body. The problem with Kuti is that she’s located inside Shachar’s head, which causes all kinds of problems. “Sometimes I want to ask her why she chose me, or what brought her to me, but I know that’s not important… because she did choose me, and she’s with me now.” That’s why Shachar wrote this book – a book about love and acceptance, for yourself and also for those who are different.
Do you love yourself? Can you gaze into a mirror and smile despite how many people feel you should be ashamed of your uniqueness? Well, Ferrin has created a shatterproof mirror which reflects boldness, distinctiveness, confidence, and self- realization. While gazing into her mirror, you may only notice the obvious, “a birthmark,” but she has survived unforgettable experiences that were intended to destroy her internally. Throughout this book, Ferrin shares authentic experiences she has encountered throughout her childhood and adulthood living with her birthmark. These experiences will not only raise awareness but prepare you for living a normal life in a judgmental world. Ferrin challenges you all to, ”Unveil your Face, and Raise your Head High!” You are distinguished and beautiful. Your uniqueness may not be ordinary, but that alone makes your life more fascinating!
Dafnis was born in 1998, covered with lots of nevi. His condition is named Congenital Melanocytic Nevi (CMN). Within a month, he went for surgery to remove as many as possible. In his early childhood, he had four surgeries. Complications appeared but weren’t diagnosed correctly. He has had seizures, caused by Neurocutaneous Melanocytosis (NCM). NCM is a rare and complication of CMN and can be fatal. He outgrew his seizures. He became a joyful kid with a good sense of humor. Until January 2012, he came home from school nauseous and dizzy after the sports class. It was the beginning of a six month battle against NCM. Even then, he didn’t lose his sense of humor. In July 2012, he passed away at the age of 13 years. His last wish was not to be forgotten. He left behind an older sister, younger brother and both his parents. During his battle his mother wrote e-mails to keep friends, family, and medical staff informed.
Written by people with a similar condition or a family member
“I have been fortunate that Sturge Weber UK charity has agreed to fund the production of the book and help me realize a dream and an ambition of mine to create something that we, as parents, can use to help our children settle in at preschool, school and also in society. I really feel that if we can educate the next generation to be more accepting of differences, then our children, and future children, will be accepted and more understood.” – Ashley Ide
R. J. Palacio wrote Wonder after an incident where her son noticed a girl with a severe facial difference and started to cry. Fearing he would react badly, Palacio attempted to remove her son from the situation so as not to upset the girl and her family but ended up worsening the situation. Natalie Merchant’s song “Wonder” made her realize that the incident could illustrate a valuable lesson. Palacio was inspired by Merchant’s lyrics and she began writing. She named the book directly after the song and used the song’s chorus as the prologue of the first chapter.
Books on support
Books for kids
- Little Girls Can Be Mean: Four Steps to Bully-Proof Girls in the Early GradesBy Michelle Anthony, MA, Ph.D. and Reyna Lindert, PhD
- Simon’s Hook By Karen Burnett
- I’m Gonna Like Me: Letting Off a Little Self-Esteem By Jamie Lee Curtis
- Spaghetti in A Hot Dog Bun: Having the Courage to Be Who You Are by Maria Dismondy
- Rawr! by Todd H. Doodler
- Buddy Booby’s Birthmark By Donna and Evan Drucker
- Drawing Together to Accept and Respect DifferencesBy Marge Eaton Heegaard
- Chrysanthemum by Kevin Henkes
- Wemberly Worried by Kevin Henkes
- What to Do When You Worry Too Much: A Kid’s Guide to Overcoming Anxiety (What to Do Guides for Kids) By Dawn Huebner
- Dare to Dream! 25 Extraordinary Lives By Sandra McLeod Humphrey
- “Put Me in the Zoo” By Robert Lopshire
- The Adventures of Katgirl By Katherine Magnoli
- Special People, Special Ways By Arlene Maguire
- The Rough-Face Girl By Rafe Martin
- Elmer By David McKee
- Freckleface StrawberryBy Julianne Moore
- Don’t Feed The Monster On Tuesday!By Adolph Moser
- What I Like About Me! By Allia Zobel Nolan
- It’s Okay To Be DifferentBy Todd Parr
- The Rainbow Fish By Marcus Pfister
- Bully by Patricia Polacco
- Spottyby H.A. and Margret Rey
- The Skin You Live In By Michael Tyler & David Lee Csicsko
- Dear Girl: A Celebration of Wonderful, Smart, Beautiful You! By Amy Krouse Rosenthal
Books for teens
- Paint Me Like I Am: Teen Poems from WritersCorps By Bill Aguado and Richard Newirth
- My Feet Aren’t Ugly: A Girl’s Guide to Loving Herself from the Inside Out By Debra Beck
- The Struggle to Be Strong: True Stories by Teens About Overcoming Tough TimesBy Al Desetta and Sybil Wolin
- Life Lists for Teens: Tips, Steps, Hints, and How-Tos for Growing Up, Getting Along, Learning, and Having FunBy Pamela Espeland
- The Skin I’m InBy Sharon Flake
- Be True to Yourself: A Daily Guide for Teenage GirlsBy Amanda Ford
- Dare to Dream! 25 Extraordinary Lives By Sandra McLeod Humphrey
- Wonder by R. J. Palacio
Books for parents
- How to Talk So Kids Will Listen & Listen So Kids Will Talk by Adele Faber and Elaine Mazlish
- Building Resilience in Children and Teens: Giving Kids Roots and Wings By Kenneth Ginsburg
- The Optimistic Child: A Proven Program to Safeguard Children from Depression and Build Lifelong Resilience by Martin Seligman
- The Blessing Of A Skinned Knee: Using Jewish Teachings to Raise Self-Reliant ChildrenBy Wendy Mogel
- The Childhood Roots of Adult Happiness: Five Steps to Help Kids Create and Sustain Lifelong Joy By Edward Hallowell
- Why Not Me? by Mindy Kaling (available as of 9/15/15 on Amazon)
- Best Friends, Worst Enemies: Understanding the Social Lives of ChildrenBy Michael Thompson, Catherine O’Neill-Grace, Lawrence Cohen
- Raising Self Reliant Kids in a Self-Indulgent World By H. Stephen Glenn and Jane Nelsen
- Pursuing the Good Life: 100 Reflections on Positive Psychology By Christopher Peterson
- Far From the Tree: Parents, Children, and the Search for Identity by Andrew Soloman
- Kiss that Frog!: 12 Great Ways to Turn Negatives into Positives in Your Life and Work by Brian Tracy
Source: Real-life issues for a parents resource guide, 2012 Nevus Outreach Conference, (updated as of 8/31/15), Allison D. Hurwitz, LPC, LSW, MSW, MA, ATR