My Son, My Hero
What Steven Powers’ son taught him about faith, perseverance and never giving up.
by Steven Powers
I was born into a family that practices SGI Nichiren Buddhism in North Carolina. Growing up, I saw the struggles of my Okinawan mother up close. Alongside other pioneer members, she traveled endlessly, every day, to tell people about this Buddhism. I was blown away by her sincerity.
Even though I had traveled to Japan with my parents, both strong members, and was actually lucky enough to have met SGI President Ikeda in my youth, I didn’t really take the practice seriously.
But it was that resolute spirit that I saw in my parents that helped me when my own son, Clark, was born on May 24, 2004.
Even when he was a newborn, I could look into his eyes and know that something was wrong. He was suffering, I just didn’t know from what. Nichiren Daishonin writes: “Chant Nam-myoho-renge-kyo with the spirit of many in body but one in mind, transcending all differences among themselves to become as inseparable as fish and the water in which they swim” (“The Heritage of the Ultimate Law of Life,” The Writings of Nichiren Daishonin, vol. 1, p. 217). With that in mind, I would literally hold him all night long so he could sleep, chanting under my breath the whole time. Every night was like that. We were inseparable.
When he turned 1, Clark’s motor skills stopped developing completely. It was a struggle figuring out what was wrong.
Different doctors, different specialists—everyone had a different theory, but with no effective treatments to offer. Eventually, my wife, Kristy, and I learned that he was legally blind, deaf in one ear, autistic and epileptic.
By then, he was having between 60 and 80 seizures a day, and doctors did not know how to treat them because he was unable to communicate. There were times where he was like a limp rag on my lap, as we drove the hour and 45 minutes to the hospital, me chanting in his ear the whole way.
One day, when I came home from work, Kristy and our daughter, Kaitlin, came running to the front door, saying, “Call Clark!” Due to his blindness, he wouldn’t know I was home until he heard my voice. So I called out his name, and he could only drag himself toward me, using his right arm and leg, elbow down to the ground like a crutch. He was crying out: “Dada! Dada!”—the only word he could say.
We rushed him to the hospital and learned that a seizure had caused temporary paralysis on the left side of his body. We were told that, in some circumstances, this kind of seizure proved fatal. Even in this darkest moment, I still felt the protection of the Gohonzon.
Nichiren states, “I am praying that, no matter how troubled the times may become, the Lotus Sutra and the ten demon daughters will protect all of you, praying as earnestly as though to produce fire from damp wood, or to obtain water from parched ground” (“Rebuking Slander of the Law,” WND-1, 444).
Together with my wife, I chanted with this same intensity to find a doctor who would have the compassion and wisdom to lead us toward an effective treatment for Clark’s conditions. This search coincided with preparations for the 2010 Rock the Era Youth Culture festivals. I threw myself into SGI activities, doing anything and everything to support the youth.
In July 2010, I traveled to Philadelphia to support the East Territory event behind the scenes. Seeing the courage and determination of those young people shifted something deeply inside of me. I saw, even more clearly, that absolutely every single youth in the SGI-USA is capable of greatness, without exception. I became a chanting machine, praying ceaselessly for the advancement of the SGI-USA youth, while keeping my own children in the forefront of my vision for the future.
As I broadened my prayer to encompass all youth, things began moving in the right direction for my son, as well. The doctors started to apply labels that made sense. After five years of experimenting, they found a combination of eight medications, three times per day, that stabilized Clark’s seizures. The doctors also implanted a vagal nerve stimulator above his heart, connected at the base of his brain stem.
This reduced the seizures to 10 per day, and dramatically reduced their severity. Before, his seizures would often lead to vomiting, paralysis and longterm dysfunction. Now they only last a few seconds to a minute at most and are easy to manage, even by his teachers.
Today, Clark is a highly functional autistic 12-year-old, who can take the bus to school on his own, participate in classes and live a happy life.
All the hospitals we visited in the Triangle area have a nickname for him: Smiley! Even in his darkest moments, lying on a stretcher, he would be smiling.
When he wakes up each day, he is so happy. Even with his disabilities everybody in his school, everyone in the community, knows him. He pierces your heart with love and joy. He inspires me to sit in front of the Gohonzon and chant bursting with joy in my heart.
As a North Carolina Region men’s leader, I tell members all the time that every day is a gift. And I am eternally grateful to my son for awakening me to my vow for kosen-rufu.
I am so profoundly grateful to the members and to Sensei. He says: “People who have not experienced painful struggles or suffering cannot understand the hearts of others. Only if one has tasted life’s bitterness can one lead people to happiness. To simply view your sufferings as ‘karma’ is backward-looking. We should have the attitude: ‘These are sufferings I took on for the sake of my mission. I vowed to overcome these problems through faith.’
“When we understand this principle of ‘deliberately creating the appropriate karma,’ our frame of mind is transformed; what we had previously viewed as destiny, we come to see as mission. There is absolutely no way we cannot overcome sufferings that are the result of a vow that we ourselves made” (The Wisdom of the Lotus Sutra, vol. 2, pp. 208–09).
With the SGI-USA’s new goal of gathering 50,000 youth in 2018 to take a stand for the dignity of life, I am determined that Clark will be there. He will be 14 years old then; the doctors said he would never live this long.
I envision lifting him up so he can be part of everything! I want him to feel the love and power he brings to whatever he touches.
This is my vow. I will be there with my son, my hero.