How I Wrote My Son As the Hero of His Own Adventure Novel

When John Peragine's son became sick, turning him into the hero of a children's novel became part of the family's journey to healing.
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Books can heal as much as they can entertain. When John Peragine's son became sick, turning him into the hero of a children's novel became part of the family's journey to healing.

One of the first things they tell you when you begin writing is to ‘write what you know’. I suppose I imagined that this would be the positive aspects of my life like playing music or drinking wine. It came as a surprise that my first novel would be about my sick child. What started out as a way for me to cope with hospitals, doctors, and terrible, yet necessary medical procedures became something that helped heal my son.

When my son was about four years old, we noticed that he had small red welts all over his body after playing outside with the hose. We loved his explanation that they were the result of “crumble bees”. He explained that they were bees so small that they could not be seen with normal vision. It seemed as viable explanation as any, but that was only the beginning.

We were on vacation at the happiest place on Earth, but it ended with my son covered in large welts all over his body and Disney sending their special EMTs to our room at the Animal Kingdom resort. No one could explain what was happening. The doctors decided the best course of treatment was to have him begin daily antihistamines. A lot of them.

The welts were becoming more frequent and more severe until we found ourselves in the ER trying to calm our terrified child as they jammed an EpiPen into his leg. And that was when my sanity began slipping. How could such a sweet little boy be suffering so much? We were told he was suffering from Cold Urticaria with Angioedema. It is a fancy way to say that he was allergic to cold and to viruses. Whenever his skin experienced a change in temperature, like getting out of a pool, his body would react with welts that could be so severe that he could stop breathing.

We spent many hours in doctor’s offices and hospitals over the next couple of years. To pass the time and to help my son’s morale, I began writing him a bedtime story. It was an adventure on the high seas complete with pirates, magic, and monsters. The main character suspiciously had my son’s name, Max. In the book he, too, has a cold sensitivity but is really the symptom of a magic that lies dormant within him. It is a power that helps him find and save his kidnapped mother.

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I wrote it a chapter at a time and read one a night to my Max, who would smile and often fall asleep before I finished. Some nights I would have to start over or at the part he fell asleep. He would give me feedback about his favorite parts and characters, so I made I included his suggestions in future chapters. Eventually, the story ended, as all stories must. Over time, he became more regulated on daily medications and began kindergarten. I forgot about the book and it sat on my hard drive. It had served its purpose, and that was the end of it. Or at least I thought it was the end.

Last May, when I picked my son up from school, he was frowning at me. I asked him what was wrong.

“Where is my book Dad?”

I was confused. I was not sure what he meant.

“My book, the one in which I am the hero. Is it published yet?”

Ah, from the mouth of babes.

“Well, Max, I had never thought about publishing it. I just wrote it as something fun for you.”

“I told all my friends in class that they would get a signed copy. When should I tell them it will be ready?”

I tried to explain that it was a little more complicated than that. Not so complicated to him—I just needed to get it done.

“You’re a writer, right Dad? Isn’t this what you do?”

Couldn’t he just ask for a puppy or an Xbox game? And so, I began the journey of editing, and editing, and did I mention editing? There was also was the question that many of you reading struggle with: Shall I pursue a traditional publisher, or should self-publish? I am still on the fence on that. I would love to have it traditionally published, if I could only package it in the appropriate genre, as it is the novel I had not intended to write. It does not fit neatly into any neat niche, except one: It helped me cope and my son heal, and so no matter what happens next, I know it entertained my number-one fan.

Books can heal as much as they can entertain. Drawing on a real-life experience and being able to write my own happy ending was therapeutic. It helped me feel more in control at a time I felt so helpless as a parent.

Write what you know. Write for those whom you love. Write to heal. Write for those you have lost. Write to celebrate, to laugh and cry. Just write and all of sudden you will have a book ready to be sent into the world.

I better get back to writing myself because my muse is now demanding a sequel to his novel. Such a little task master!

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