I Am Lucy

By Chuck Neighbors

Illustrated by Chris Kielesinski

Available on Amazon here: I Am Lucy

Some needs are special, they’re not like the rest.

They may leave a scar upon your chest.

You may look different, have a tube, a scar.

But all these things are not who you are.”

Even though she has a rare syndrome and some major health issues, Lucy is so much more than her “special needs.” Lucy wants you to know that in so many ways she is just like you—special indeed! Lucy’s story is a powerful voice for children with special needs, disabilities, and illnesses. Her story is also a valuable resource not only for parents and families with vulnerable children, but all people who need to learn the lessons of respect, understanding and compassion for those whose daily life is physically and emotionally challenging.

Lucy has Kabuki syndrome, a rare genetic disorder believed to affect 1 in 32,000 births worldwide. For more information on Kabuki syndrome visit: www.allthingskabuki.org

Watch Lucy and family explore the book

Why I Wrote this Book

Here is a little backstory:

Lucy is the first child in my life to be in the “special needs” category. Oh sure, I had met other kids with special needs, but until Lucy, never really spent time getting to know them. The more I learned about Lucy and Kabuki Syndrome the more it became clear to me that she would be a child that would “stand-out” for her differences. The idea that her future would include being teased and treated cruelly by other kids began to sink in and frightened me.

One day my wife, Lorie, took Lucy to the park. While swinging on the swings another little girl (at the park with her father), was staring intently at Lucy. Finally, she said to her father “that girl looks funny.”

Thankfully that father said, “Oh honey, I don’t think she looks funny, I think she looks beautiful.”

The little girl shrugged accepting that answer and went on with her playtime.

While this father handled the situation wonderfully, the fact is that there would not always be someone nearby to intervene at those teachable moments. I knew that this was just a glimpse of what would be a reality in Lucy’s future.

Then last year Mallory, Lucy’s mother, posted on social media:

I have a rare syndrome,
I have a feeding tube,
I have a heart defect,
I have special needs,
But who I am is Lucy.”

And that was the inspiration.

As an actor, I’m accustomed to playing a role–getting inside another person’s head. I imagined what Lucy would want to say to those people that looked at her and all they saw was her differences. They didn’t see her, they saw the scars and what they perceived as defects. I believe she would say, “Those things aren’t me–Who I am is Lucy!”

While many people may consider this a good book for a child with special needs–and it is–the real target audience for the book is people like the little girl in the park, and her father. And to be honest, people like me.

Illustrator Chris Kielesinski Captures Lucy Perfectly

The first sketches
Early cover draft
Lucy and friends

Rob Paulsen Reads I Am Lucy

Reviews:

“With I Am Lucy, Chuck Neighbors has struck a familiar nerve in all of us. We all know or have met a ‘Lucy’ and this book and its beautiful simplicity is a reminder to embrace our humanness in whatever form it presents itself. The message of I Am Lucy is timeless and can never be shared enough. We are all ‘Lucy’ in our own ways, from time to time. Well done, Chuck.” – Rob Paulsen, Emmy winning voice actor and author of Voice Lessons: How a Couple of Ninja Turtles, Pinky and an Animaniac Saved my Life

“This is a beautiful tribute from the heart of a grandfather to his granddaughter. I believe kids with special needs will love seeing themselves represented in this heart-felt book.” – JJ Heller, singer/songwriter

“An easy read with eye catching illustrations. I Am Lucy is a wonderful short story that encourages acceptance. A perfect example, for children and adults, that there is so much more to an individual than the differences you see. As a patient advocate and parent of an individual with Kabuki syndrome, I highly recommend others add I Am Lucy to their library. Wonderfully written, Chuck. I love the book and can’t wait to share it.” – Rene King, Founder & CEO, All Things Kabuki

“This is a gem of a little book. The use of clever rhyme and delightful illustrations captures the personality and exuberance of little Lucy. She is indeed “a child first” and her disability comes second. While endearing, this book is also informative at just the right level for young children and families. The reader is reminded that children’s differences in development still allow for their unique and vibrant personalities to shine through. And Lucy shines! I look forward to recommending this book to many families in our early intervention program.” – Sharon de Laveaga, M.A.CCC-SLP, Speech-Language Pathologist

“All children want to be accepted and loved just the way they are. As a parent of a child with a craniofacial syndrome and as an educator of young children with special needs, I Am Lucy opens the door to talk about differences and similarities that we have. I Am Lucy encourages us to look beyond these differences to see that children with special needs are children first – more alike than different. This book is perfect for a young child’s library, a preschool classroom, or as a gift for a family just beginning their journey with a child with special needs.” – Karen Foster, MS, EI/ECSE Specialist and parent to Elisabeth

“This delightfully illustrated book reminds us that while each one of us is different in our own way, we are all people just the same. Chuck’s ability to describe Lucy’s special needs, as well as her strengths and interests, makes this book both educational and a pleasure to read. As a Special Education teacher who has supported hundreds of children and their families, I highly recommend this book to both adults and children for it’s ‘People First’ message.” – Diane DiPasquale, M.S., Special Education

“When we embrace differences and truly see each other, we break down stigmas that divide us and create a culture of kindness and inclusivity. Neighbors captures this idea beautifully in his book about his granddaughter, Lucy, a playful, pizza-eating, loving child who has Kabuki syndrome.” – Brennan Young, Special Education Teacher

“As I read I Am Lucy I heard my grandmother’s voice in the back of my mind saying one of her favorite expressions: “God don’t make no junk!”. Though grammatically flawed, grandma’s message was always clear that we all have our scars, imperfections, and physical differences, but God creates us all for a unique and special purpose. Chuck speaks a lesson to all of us through this little book of who we REALLY are. Like Lucy, we can all say (if perfectly honest with ourselves) “I am different”. If any of us negatively identifies what is “different” in ourselves or others, then what we miss is what God created: the “ME” that makes us who we are. Chuck makes it clear that it is not the imperfections that define us, it is our uniqueness as one of God’s created children…and I Am Lucy is a lesson for all of us.” – Rev. Dave Winton, Hermitage, TN