My Son Is the Reason I'm an Author. Even 10 Years After His Death, He'll Always Be My Hero (Exclusive)

My Son Is the Reason I'm an Author. Even 10 Years After His Death, He'll Always Be My Hero (Exclusive)
Source: PEOPLE.com

James Ponti is the New York Times and USA Today bestselling author of four middle grade book series, including City Spies and The Sherlock Society. His novels have been named to 45 state award lists, optioned by Hollywood, and translated into 15 languages. He lives with his family in Orlando, Fla.

I began my career as a children's book author at the not-so-tender age of 46. I've since written 13 Middle Grade mystery, adventure and spy novels. This occupational shift wasn't the result of some grand career plan or a midlife crisis inspiring me to pursue a lifelong dream. It was more an act of desperation. The kind you embrace while sitting on the floor of your child's hospital room.

Before I get to the desperation and the hospital, I want to stress that the greatest joy of my life is being a father. I've loved it from day one and despite the difficulties we've faced, our home has always been filled with love, laughter and hope. Which is good because we've really needed all three.

My dream was to become a screenwriter. After film school, I married my college sweetheart, Denise, and we moved to my home state of Florida, where I got my start in kids' television. I spent two years writing comedy sketches for the Mickey Mouse Club on Disney Channel and planned to relocate to Los Angeles, with the hope that I might find work on a sitcom.

We were in our 20s and excited about what lay ahead for our young family that now included 2-year-old Alex and newborn Grayson. That excitement, however, was tempered by our concerns about Alex's developmental delays. Among these, he spoke only a few words, had stopped playing with toys and no longer responded to his name. Countless tests and evaluations were inconclusive. Our worries grew.

It was 1995, and autism was not a word you heard much, which is why we were alarmed when both a swim instructor and an audiologist used it as a possible explanation for Alex's struggles. Our pediatrician assured us that this wasn't the case, but we were worried enough that we decided to postpone our move to California and stay in Florida, where we had family and a support network.

I began working for Nickelodeon and fell in love with writing for kids. At the same time, Alex lost what little speech he had and was soon diagnosed with autism. We poured all our money into any therapies we thought might help. Alex was completely non-verbal and had no method of communication. But in the cocoon of our family, he was happy. There was no way we were going to disrupt his life by moving. It was far easier for me to alter my career goals than for him to adapt to new surroundings.

When Nickelodeon stopped producing shows in Florida a few years later, I had to find a new career. I wrote cartoons and began producing television shows like Roller Derby, History Channel documentaries and countdown specials for Spike TV. I chased after anything I could do from Orlando in order to keep things stable for Alex.

One night, while my family and I were in Philadelphia, the hotel bed I shared with Alex began shaking violently. This was the first time we realized he was having seizures in his sleep. Within a year, he was having as many as 10 to 15 every day.

Even though he was incapable of academics, Alex went to school to be around people and try to learn basic skills like feeding himself. Unfortunately, the endless seizures caused neurological damage and he lost most of the skills that he worked so hard to develop.

When Alex was 12, I was hired as a producer for the Golf Channel. It was my first "real job," permanent with benefits and insurance. (My previous television work had all been freelance.) Not only did this give us some stability, but my boss let me adjust my schedule so that I could take care of Alex in the morning and drop him off at school. Denise is a teacher, and her high school arranged for her to have a planning period at the end of the day so she could leave in time to pick him up.

This tag team approach is how we did everything. At home, one of us would sit with him or hold his hand -- which was necessary the entire time he was awake so that he wouldn't get hurt as a result of a seizure -- while the other did the cooking, cleaning and household tasks. At night, we took turns lying with him in bed because he had to be held until he fell asleep. We would swap every hour until he finally nodded off around midnight. It was extremely difficult, but we loved him so much. Alex and Grayson's tender, completely non-verbal relationship was a thing of beauty. Despite our challenges, we were happy. Stressed but happy.

Financially, we struggled because of the therapy costs. At times, it looked like we might lose our house. Now 30 years old, Grayson recently told me he has no idea how our family made it through all of this. Neither do Denise and I.

One key was that I started doing intellectual property writing on the side. I wrote chapter books based on television series and novelizations of Disney movies; even straight-to-paperback young adult romantic comedies under a pseudonym. I didn't intend it to lead to anything but it helped keep creditors at bay. It also showed me that despite being a lifelong reluctant reader I could write a book.

Denise and I were usually focused on immediate concerns so we rarely got to plan long-term; but a huge deadline loomed on the horizon. When Alex turned 22, he would age out of school and need 24-hour care. Since neither of us would even consider the idea of sending him to a group home, it meant his care would fall to us.

One night, we talked about how we might deal with this. The only option we could come up with was that one of us would have to quit their job so that they could take care of him during the day. Then, when the other came home from work, we could swap roles freeing the first person up to do some sort of side hustle at night.

I thought that person should be me.

My television job paid better than her teaching but her position was more secure. Our plan was that I would become Alex's caretaker during the day and an author at night.

It seems ridiculous looking back that we thought this might work but it was the only thing we could come up with. Alex was 19 at the time so I had a few years to get the ball rolling. One day, after dropping him off at school, I sat in the parking lot working out an idea for a romantic comedy about a girl at a science magnet school who devises an experiment to figure out why people fall in love. I named the school the Metropolitan Institute of Science and Technology, MIST for short. I liked MIST more than I liked the plot. That idea would ultimately lead to my Dead City trilogy.

I wrote one of the first chapters of Dead City while I was sitting on the floor of Alex's hospital room. He was there for a 96-hour-long EEG and had to stay in the room hooked up to countless monitors for four days. It was heartbreaking because I couldn't explain to him why we were doing this. I just stayed at his side and tried to comfort him. When he would nod off to sleep, I would write. This was our plan. Me on the floor making up a zombie story. Amazingly, we pulled it off. And I mean all of us. All four of us had to work and sacrifice to carve out time for this pie-in-the-sky side hustle to take root.

Working full-time during the day and writing nights and weekends, I completed three Dead City books. The sales were good enough that once Alex aged out of school, I had the beginnings of a new career. Even better, we were able to arrange it so that a health aid could be with him for five hours a day. That was enough to allow us to adjust our work schedules so that I didn't have to quit my job yet. I kept writing nights and weekends hoping to get the books to a point when they would be profitable enough for me to do so.

I was in the middle of writing my fourth book, Framed, when I went to wake Alex one morning. The instant I saw him, I knew something was terribly wrong. He was completely unresponsive. My wife and I tried CPR. The paramedics arrived and tried everything to revive him. Even when it was obvious that he wasn't going to make it, they kept trying. One told me, "We're all parents. We're not going to stop until we get to the hospital."

Our sweet Alex died March 20, 2015 at the age of 22 due to complications from a seizure.

I didn't write for months. I couldn't. I was frozen. It looked like Framed wouldn't be done in time for publication. If ever. I had a difficult phone conversation with my editor Fiona about whether or not I could finish it. During our talk, she lightened the mood by asking about the cliffhanger at the end of the first chapter.

The book began at the story's climax and then most of it was told in flashback. The key to making that work was the final line of chapter one, when our boy detective, Florian Bates, notices a tattoo on the bad guy's arm and it triggers the solution of the mystery. It ends with him saying, "That doesn't leave us much time to talk about why your tattoo changes everything."

Readers have to wait another 250 pages to find out why. But Fiona had been waiting for more than a year -- ever since she first read it as part of my submission. I told her the as-yet-unwritten payoff and, even on the phone, I could tell she was beaming as she said, "That's really good."

And it was. I realized then that I very much wanted to finish the book and share that solution with young readers. The creative dam burst and I wrote furiously over the next month and a half. Somehow, Framed came out in time. It was well-received. And so was the next book. And the next book. And so on.

I quickly realized that Alex isn't just part of these books: He's the entire reason for them. And as long as I write them, a part of him is still alive.

During the COVID-19 pandemic, I switched to writing books full-time. I love it. It is absolutely, without question, 100 percent what I was always meant to do. For years, I thought Alex had diverted me from my career path. (Not that I ever resented or blamed him for that.) But it turns out, he was leading me to it. He was smart like that.

Whenever we had to stay at the children's hospital, I was always amazed by the community that exists among the families. There's a level of kindness and empathy that only happens when you're with people who understand through their own experiences what's going on in your life.

I still encounter those families. On multiple occasions, I've received gut-wrenching letters from parents who talk about how their child is in intensive care or a cancer unit and their one reprieve is when they read these books together as a family. They thank me for helping. But I always know that Alex is the one helping. He's been gone for 10 years and he's still looking out for the other kids in the hospital.