A Boy Changed, but not Defined, by his Injury

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by Niki Acton

Ethan LaPorte and his mother, Sara, reunite with "Grandma" and "Grandpa" and begin their journey of forgiveness.Most elementary school students are concerned with their friends, whether SpongeBob is on, if they can have cookies with lunch, or what new video games just came out. Eight-year-old Ethan LaPorte deals with those ordinary concerns and so much more. Ethan was burned at age 6 and continues to deal with the repercussions today—a silicone mask, ongoing surgeries, and questions about his scars. While it is more than most adults have to manage, Ethan handles the daily struggles with remarkable finesse.

Raised by his single mother, Sara, Ethan had a full, active, and happy childhood. All of that changed one November, when the LaPortes’ lives were altered forever. For Thanksgiving, Sara and Ethan had traveled to Tennessee from California. The two were visiting Ethan’s godmother and Sara’s best friend, Cathy, and her family at their country home. The night before the LaPortes were planning to leave, they built a bonfire and roasted marshmallows. Sara remembers the evening as a special time full of laughter with the people she loved.

The next morning, Sara was packing and her son was outside with their friend’s father, who they called “Grandpa.” Five minutes after checking on Ethan from the window, Sara heard screaming and looked out to see the family’s dog on fire. Then, she noticed Ethan had smoke coming off his body. She later learned that Grandpa had poured gasoline on the ashes of the previous night’s fire to see if the embers were still alive, which was a common practice for him. When the coals ignited, sparks landed on Ethan’s clothing and the dog.Ethan as an active 8-year-old heading off to a day at school.

By the time Sara rushed out of the house, her friend’s fiancé had already rolled Ethan and extinguished the flames. They called 911, but a panicked Sara drove Ethan to the nearest hospital, only to find that the facility wasn’t large enough to care for the 6-year-old’s injuries. Ethan was then flown to the Vanderbilt Burn Center in Nashville—a 31⁄2-hour drive away.

With the chaos that followed, Sara can only remember how unreal it all felt. She was in shock, scared to death. Ethan, also terrified, was innocent enough as a 6-year-old that he wasn’t able to truly grasp what was really happening. Sara, on the other hand, was furious that anyone could do something to cause this type of injury to her son. 

Ethan’s injuries were severe. He suffered third-degree burns on 35% of his body, primarily to his chest, neck, and lower face. Ethan was in the intensive care unit for 5 days, but Sara was told to plan on her son remaining in the hospital for the next 2 months.

When Sara asked the doctor what his major concern was for the first surgery, he informed Sara that his only worry was Ethan’s uncertain survival. He pulled through that surgery, but had 14 more to go. Despite infected grafts and a few close brushes with death, his spirit would not be broken. The boy was a strong- willed and noncompliant patient, with no shortage of anger. His doctors said that this anger and spirit was going to pull Ethan through. They just had to work at changing the rage into positive energy needed for his recovery.

Sara was just as angry as her son. She couldn’t understand how someone could be so careless. Sara was now an unemployed single mother in a strange state. While sleeping in the hospital for months with no rest, she continued to stay strong for the son she loves and lives for. Through all this adversity, loss and anger, Sara still felt blessed by the many gifts and support from strangers. The communities in Nashville and in the LaPortes’ hometown sent presents, cards, prayers, and helped pay Sara’s rent. It was an incredibly wonderful way to feel supported when Sara and Ethan were facing so many difficulties. After months in Nashville, the LaPortes traveled back to their hometown. Ethan’s aftercare, which is still a major part of his life, proved to be a relentless battle. It was a challenge to integrate into everyday life. Ethan hated the pressure garments, silicone masks, and physical therapy. Sara not only had to battle normalizing their lives, but she had to battle her son, who was not a willing patient, to comply with daily therapies at home that she knew were necessary for his recovery.

Ethan returned to Hillcrest Christian School supported by The Journey Back school reentry program. Ethan’s school nurse, Kathy Mazsudo, used this resource, which was developed by the Phoenix Society, to help the other students understand Ethan’s burns and his recovery. Through The Journey Back exercises, Ethan and Sara especially enjoyed making up crazy scenarios for role-playing exercises, often laughing together hysterically late into the night, as they practiced answering questions about his burns.

When Ethan returned to the classroom, he was never mocked or taunted. The school organized fundraisers, paid the family’s rent, and helped them with living expenses. Sara attributes half of Ethan’s success at school to The Journey Back program and the other half to the hundreds of people who gave their support. Also beneficial to his recovery have been the burn camps he attended, Champ Camp in California and Cheley/Children’s Hospital Burn Camp in Colorado. Through the camp experiences, both Ethan and his mother learned new and useful skills.

Sara and Ethan have a new life in which they experience looks and comments daily when they are outside of their home. However, the family doesn’t dance around Ethan’s injuries. Whenever her son joins a new team or meets new people, Sara explains to them what happened and stresses that they should be empathetic. Sara and Ethan call the practice “moving the elephant out of the way.” Ethan, wearing his pressure garments, meets a cast member of the Animal Planet show at Universal Studios.

Sara recalls an incident of teasing when Ethan was playing football. A boy on the opposing team said, “Dude, your neck looks disgusting.”

“Who cares?” Ethan asked. Then he turned and walked away.

Later Sara insisted that her son should have let the boy know that what he said wasn’t okay, and that it had hurt Ethan’s feelings.

“Mom,” he said, “I think I look fine, so who cares if he doesn’t?”

Sara continues to learn from Ethan. “He’s teaching me to be a better person,” she says. The LaPortes work to keep a positive attitude and lean heavily on their faith and prayer.

A year and a half after Ethan’s accident, Sara’s friend in Tennessee was planning to get married. Sara and Cathy had remained best friends through all they endured during Ethan’s recovery. However, this wedding would be the first time they would see Grandpa since the accident. Ethan, along with Sara, met with him before the ceremony. They hugged, they danced, and they had a great time.

It had taken Sara 18 months to let go, move past her anger, and to reconcile with Grandpa. Now Sara and Ethan visit the entire family a couple of times a year. Sara and Ethan have learned the true meaning of forgiveness through their ordeal and feel they are better for it.

Today, Ethan is an outgoing, funny, and animated boy. He plays football, which makes him feel important, proud, confident, and strong. Ethan also has an amazing voice, raps, and plays handball with his many friends. He is quite popular in school and has an unbreakable spirit. Certainly his burn injury has changed his life—Ethan will soon have tissue expanders placed in his shoulders for 3 months and faces about 20 more surgeries—but he and his mother will not allow these challenges to define their lives. Strong, tough, and with an unbreakable spirit, Ethan LaPorte is a burn survivor, continuing to move forward. 

 

This story is an excerpt from The Phoenix Society’s® Burn Support News, Summer Issue, 2009. Burn Support News is a quarterly publication that contains articles on the emotional, psychological, and social aspects of burn recovery.  All Rights Reserved.
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