Let’s start with the basics: I wrote a children’s book about a kid superhero with disabilities because my son, Emmanuel, needed it. My younger brother, who was diagnosed with autism, needed it. I needed it. My husband needed it. My family needed it.
When my son Emmanuel spent just shy of 11 months in the NICU, we searched high and low for books that would spark hope in our seemingly hopeless situation. I found nothing speaking to our child, a child whose doctors gave little to no chance for survival, and even fewer prospects for a fulfilling quality of life.
Emmanuel stayed at three different hospitals, the largest being the Children’s Hospital of Philadelphia (CHOP). CHOP was a fantastic facility. Their doctors and nurses understood our family’s circumstances, the trauma, and worked to address the entire range of our needs: health-wise, emotional, social, and financial. Never had I encountered a medical system so seamless, yet full of compassion. Even still, I also saw so many sick children, so many families in search fo a glimmer of hope.
“Hope lives here,” read the standing banner I saw each day as I sanitized my hands and entered the NICU to visit my son. It was a small gesture, yet it quenched a thirst deep in my inner core, it gave me the extra push I needed to take whatever doctor’s report came my way, and still say, “I choose hope.” Along the way, I would meet families in such dire circumstances. Families who had been battling childhood illness for years, sometimes over a decade. Rare cancers, unexplainable health abnormalities, medical bills that left them bankrupt and homeless.
As a trained social worker, I’d always been a bit more aware of social disparities than most, but something shifted deeper in me during that season, learning that could never occur within the classroom. Listening to the stores of fellow families during daily meals sparked a new resolve within me. No matter what happened, the experience would not be wasted.
Families with sick children or children with disabilities can sometimes lead isolated alternative lives their friends and families may never understand. They fade into the background, opting to make friends with families in similar circumstances, who may better understand their circumstances and life choices. They disappear into the background of society and are all but forgotten. Their stories are rarely shared outside of the context of the nightly news. They become statistics rather than real people with real lives.
I have always been a squeaky wheel. The touching story of “Mighty Manny,” a toddler donning a hearing aid, glasses and g-tube is just another way of me saying, “Hey, we are out here.” It is also meant to encourage children who have never encountered peers with disabilities to have meaningful conversations that I hope will lead to more inclusive classrooms and communities.
Families of children with disabilities should not live in isolated caves of hopelessness. We need to build knowledgeable communities filled with compassion and hope, so our children can thrive. The “Mighty Manny” book and coloring book is just one person’s contribution to a very complicated puzzle. I hope it will be a positive step in the right direction.