How The Book Loving You Big Aims To Change The Narrative Around Disabilities

Loving You Big by Leah Witman Moore is the story of a family facing extraordinary circumstances. It captures what it looks like to raise three children with very different needs, trying to maintain marriage and sanity, and learning how to navigate the joys and sorrows of life between wig-clad dance parties and the painful loss of loved ones.

Moore is a graduate of the University of Wisconsin and has a Master’s in Educational Theater from New York University. She received the prestigious teacher of the Year award, presented to ten New York City teachers annually. When she is not teaching high school English and Theater, Moore creates more stories centering around individuals with disabilities. This powerful and poignant memoir teaches readers to celebrate every small victory, savor every chaotic moment, and recognize the profound impact of a kind word.

“Writing this book, starting my book, and continuing on my advocacy work, is my way to push on the existing narrative, so more parents don’t spend time thinking a diagnosis for their child is something that needs to be healed,” said Moore. “Until the people who stare at my daughter’s orthotics on the playground learn to come over and say, ‘hello,’ and until a larger society that has been relegated to the sidelines for too long becomes mainstream – I will continue writing until there is a change. I hope hearing stories of my family humanizes experiences to help other people make sense of their accounts or change their own biases.”

Receiving the Diagnosis

In Loving You Big, Moore recounts how her life completely changed in the blink of an eye. It went from zooming through the day, happily teaching high school students, and coming home to her loving husband, Zachary, to getting hit with the unexpected – her first child was born with an extremely rare syndrome called Cri Du Chat.

Cri du chat syndrome is a rare genetic disorder caused by missing pieces on a particular chromosome. The characteristics of a newborn with cri du chat syndrome include a high-pitched cry, a small head, and a flattened bridge of the nose.

“When I speak to people about being a parent of a child with a rare disability, the conversation always connects back to the “Day of the Diagnosis,” said Moore. “If you are a parent of a child with a rare diagnosis that can receive a name for it, you are left with the satisfaction of an answer. You also have an introduction to a community and a new sense of fear. On my day of diagnosis, I had to drive Jordan home alone because my husband and I took two cars to the doctor. I had to pull over on the side of the road because I was crying so hysterically that I could not see through my blurred vision. Jordan sat in her car seat and began to laugh at the noises my “ugly cry” was making. I looked at her through the rearview mirror and realized the child I took into the doctor’s office was the same one I was taking out. I would still need to cook her dinner, read her a bedtime story, and rock her to sleep. It was enough to get her home safely, order some Chinese food, and wait until she was finally asleep before I really let myself break. The first night I mourned an entire life for her. It was as if a chalkboard of her milestones and the stories I had prewritten for her had suddenly been erased.”

Moving Forward and Advocating For Care

After Jordan was not meeting her milestones, Moore and her husband started on a medical odyssey. They spent hours in waiting rooms and were often told by various experts that they could not put the pieces together to help. Moore and her husband were warned that their daughter might never walk or talk, and on one occasion, a childhood developmental expert advised them to quit their jobs and transform the layout of their home to give Jordan a “fighting chance” because “there wasn’t a lot of hope.” 

“I hoped that I could love the disability out of my child and that my resourcefulness could discover the right experts to help her find her way in the world,” Moore shared. “With the introduction of sign language, countless laps around the living room in a walker, and daily wig-clad dance parties, I learned nothing about Jordan needed to be fixed. Instead, it was the world around her that needed to change.”

They ultimately found strength in their pediatrician, who took the helm to guide their search. “We found expert therapists who did not need a diagnosis to get Jordan the support she needed. They began to fill Jordan’s schedule with twenty-four hours of services, including speech, feeding, occupational, and physical therapy. We also received a family trainer through Early Intervention services to support our mental health as parents, guiding our understanding of raising a child with extreme needs.”

When asked how her career in teaching English and Theater for over sixteen years may have lent itself to advocating for her daughter and writing this book, Moore answered, “What I was experiencing as a teacher and a mother connected. First, I started to follow my own advice from my mini-lessons about finding time to write on a busy day. Second, I analyzed my implicit biases about individuals with disabilities as we studied Lennie in Of Mice and Men. Third, I examined the single stories perpetuated in my own community after analyzing The Danger of a Single Story by Chimamanda Ngozi Adichie. Finally, I became a teacher because I knew I wanted a profession where I was continually learning. When I started to embrace that, my role as a mother changed from anxious to advocate.”

What Moore Hopes Is the Takeaway

Nearly 15% of the world’s population has some form of physical, emotional, or intellectual challenge. However, according to the research of Mitchell and Snyder, more people adopt attitudes about disability from books than personal interactions.

Moore feels that due to the way the school system is designed, some children may not meet a child with a significant disability until they have reached middle school, if at all. That means the stigmas about individuals with disabilities and lack of access to an interaction between those who are typical and those who are disabled are greatly limited. “Bluntly speaking, many people are learning about individuals with disabilities from texts that are not changing the narrative,” Moore states. “My goal is to change that.”

As for advice for parents in a similar situation, Moore wants to remind them that they are people first before parents. “The most important part of the balance for me is my own mental health,” she advised. “Making sure I am speaking to someone who is helping me to maintain my balance and remember what it is that makes me feel like a full person – not out of guilt, but out of joy.”

A portion of the proceeds from Loving You Big will support Shane’s Inclusion, which creates inclusive playgrounds for children with disabilities worldwide.