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Raul and his grandson Evan have a special bond even as Evan cannot communicate with words
Raul and his grandson Evan have a special bond even as Evan cannot communicate with words | Photo courtesy of Raúl Díaz Fierro

Grandfather becomes guardian of disabled grandson, writes book about their imaginary adventures

All of these experiences feel exciting, but I still struggle at times. When I walk in the street or give interviews, I try to smile and be nice to everyone. Yet, at times I feel like I'm falling apart inside. Explaining these emotions proves difficult.

Interview Subject
Raúl Díaz Fierro, 57, lives in the community of Santiago Miltepec near Toluca, the capital of Mexico. His grandson Evan was born on November 3, 2011. Raúl began writing the book Evancito y el Abuelo in 2013 and published it at the end of May 2022.

The first edition print run included one thousand copies. The printing costs were paid by the author himself and he sells the books at his food business. With the sale of this book, Raúl seeks to generate income to continue caring for his grandson.
At the time of the interview, he had sold 500 copies in almost two months, both in Mexico and in the United States.
Background Information
According to the 2020 Population and Housing Census in Mexico, there are 7,168,178 people with some type of physical or mental disability. According to data from the Mexican Institute of Social Security (IMSS), cerebral palsy (PCI) is the main cause of disability in childhood and around 10 percent of patients with disabilities have a diagnosis of infantile cerebral palsy.

The Asociación Pro Personas con Parálisis Cerebral (APAC) defines cerebral palsy as “a persistent (although not variable) developmental disorder of postural tone and movement that conditions a limitation in activity, secondary to a non-progressive lesion in an immature brain.”

TOLUCA, Mexico ꟷ When my grandson Evan arrived, it felt like the manifestation of love in my life. Born at six months old, he suffered severe anemia and only weighed 1.93 pounds. A few days after birth, he went into cardiorespiratory arrest for four minutes.

The doctors revived him and after weeks in the hospital, we took him home; but a few days later he went into respiratory arrest for more than 10 minutes. We rushed him urgently to a specialized clinic and he survived.

The process repeated a week later for a longer time frame, and he ended up with what the doctor’s called brain damage. Many neurons died and they diagnosed him with psychomotor retardation, but at three years old, with more precise studies, they determined he had infantile cerebral palsy.

Grandparents gain custody of newborn disabled grandson

The first time I heard those words I had no idea what they meant. Confused and unsure what would happen, I felt compelled to investigate. The complicated nature of the situation settled in and I knew I needed to find a way to help him.

My wife and I agreed to take care of our grandson permanently. We carried out legal guardianship and custody proceedings, assuming legal responsibility. Realizing the severity of his cerebral palsy, we sprang into action. We took him to special schools and therapies. We found ourselves immersed in the lives of people with disabilities.

Evan’s challenges included blindness. He experienced complete blindness in one eye and sees two percent in the other. I felt so helpless., but little by little, I realized his mere presence reflected love, not only for us but for all people who know him. His expression of love captivates others.

Evan cannot walk or talk, but he communicates with me. He understands me and I understand him. The experience gave me an idea. I wanted to capture the imaginary adventures we have together in a book.

Grandfather writes book about he and Evan’s imaginary adventures

Since no one else understands what Evan tells me, in my imagination I created dialogues where I narrate my experiences with my grandson. I describe scenes where Evan tells me he went out into the street and a person asked him about his grandfather. From there, we start going on adventures.

We go for a walk and Evan asks me to describe what is around is. I explain in great detail what we see in the surroundings. Sometimes, when I imagine these moments, it makes me feel like I’m living them with my grandson.

To some people, this may seem simplistic; but for Evan and I these are our imaginations transformed into a book.

Since the day Evan was born, very special things have happened. In 2018, as I sat in a taxi cab, men entered the car to rob me. They hit me hard with their guns, put a knife to my neck, and threatened to kill me.

Raul’s book about he and his grandson’s imaginary adventures is called Evancito y el Abuelo | Photo courtesy of Raúl Díaz Fierro

In that moment, only one thing occurred to me. I pleaded with the crazed men, “I have a child with cerebral palsy who depends on me and needs my help.” At that moment they stopped beating me and let me go. I attribute this miracle to the angels, including my grandson.

Another time, in 2016, Pope Francis came to the city of Toluca, very close to our community. A huge crowd gathered but somehow, the Pope made it to us. He kissed Evan. I thank him for coming to our community and for noticing my grandson. He patted me and said, “You have to work hard with these children.”

Despite the emotional distress, boy with cerebral palsy brings meaning to man’s life

Throughout my life, I had four near-fatal accidents, and nothing happened to me in any of them. I believe Evan was always my life mission and now I understand that. I get to take care of a little angel who came into the world and brought with him, immense love.

Thanks to Evan’s beautiful personality and the book I wrote, we have become known in many places. People look for us. They want to meet my grandson and talk to me. This has been good for us.

All of these experiences feel exciting, but I still struggle at times. When I walk in the street or give interviews, I try to smile and be nice to everyone. Yet, at times I feel like I’m falling apart inside. Explaining these emotions proves difficult.

I try to be very strong around people, but when I’m alone the feelings of sadness sometimes get the best of me. I may go into a room to cry alone. My life is very restricted, so I focus on giving Evan love. It hurts to think about the times when he has fallen out of his wheelchair or had seizures. It hurts deeply. I wish I could relieve him of all his pain.

Through it all, people have offered so much support. On the social networks, I get tons of encouragement and good wishes. It lifts my spirit during difficult times. That strength helps me continue my mission – to take care of Evan.

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Daniel Higa Alquicira is a freelance journalist who lives in Mexico City. One of his greatest pleasures is talking with people to discover what they think and what they feel.