Scanning the shelves at children’s sections of bookstores over the years, Annette Pérez had noticed two things: first, there were not many books about children of special needs, and second, none were about hydrocephalus.
Some form of hydrocephalus, a developmental disability defined as an abnormal accumulation of fluid in the brain, is estimated by experts to affect roughly 1 in every 500 newborns, according to the National Institute of Neurological Disorders and Stroke.
Pérez, diagnosed with hydrocephalus as an infant, was one of them. So, she resolved to fix the problem herself — and did, by writing “My Brain Won’t Float Away,” an illustrated book in which Pérez narrates her story of growing up with hydrocephalus. Within the colorful pages (illustrated by Yolanda V. Fundora), she detailed her fears, self discovery, will to succeed, and triumph.
“Everything in this book is based on my experiences as a child, even down to looks,” she said.
Living With Hydrocephalus
Pérez, born and raised in New York City, grew up in “very loving and nurturing environment.” Her parents told her she could succeed as an individual, no matter her disability. But growing up with hydrocephalus was not easy.
“The biggest difficulty was having other people staring at me as if my condition were contagious or something,” she said.
Along with trying to handle school and social life, she was constantly visiting doctors and hospitals. Moreover, she had to work hard at learning basic functions like tying her shoelaces, because she could only use one hand. But she persevered, and after high school scored a job with the Department of Education.
Eventually, though, Pérez decided she wanted more out of life. She enrolled in BMCC, and after four years of part-time work, she graduated in 1998 with an Associate’s degree in Early Childhood Education. And while here, she met a special someone.
During her last year at BMCC, she ran into Alex. Alex, who has cerebral palsy, and Annette had attended therapy together as kids living on the Lower East Side, then attended high school together, but lost touch after graduation. Overjoyed to run into each other, they spent “two or three hours just catching up on old times,” she said. With Annette set to graduate, and Alex just starting at BMCC, they exchanged phone numbers, and a year later they were engaged. They currently live happily in Queens.
After BMCC, Pérez obtained a Bachelor’s degree in Spanish from CUNY’s York College. She’s now pursuing her Master’s degree in Early Childhood Education and Special Education.
“I can help disabled children because I’ve been through this,” she said. “Also, a lot of these children see the physical problems that I have and think ‘if this person has a disability, and is my teacher, then maybe when I grow up I can be anything I want to be.'”
Writing “My Brain Won’t Float Away”
While Pérez knew a book was needed, she didn’t know how to start, or what to write. Then, out of nowhere, there was a spark.
“I was at home on a weekend with no plans and nothing to do. I was in my house watching TV … and the idea just hit me,” she said. “And I thought, ‘Maybe I won’t really do anything with this idea, but just to be safe, let me write it down and save it.'”
Next thing she knew, nearly everyday she would come home from work, sit at her computer and work on the story. One day she decided to show her writing to a professor at York College, who read it and told Pérez that it could eventually be a book, and to keep writing.
The book, published by Editorial Campana in 2007, is written in both Spanish and English. Its aim, she said, is twofold.
“I want people to understand that just because some of us are different, it doesn’t mean that, as disabled people we don’t have feelings,” she said. “I want to give some hope and awareness to those individuals who are living and dealing with a similar situation. One can accomplish many things even if having a disability is a part of your life. I hope this book shows people that a disability should not control their life. The individual controls his or her own life!”
