Custom Scars: Local Pastor Publishes Book on Journey of Hope

| February 26, 2019

FRANKLIN, Pa. (EYT) – Everyone has scars. We often attempt to keep them hidden, but deep down inside we know they’re still there.

In November 2018, Steve Henry, the pastor at Victory Heights Church in Franklin, published “Custom Scars,” a book about a journey of finding hope in the midst of life’s pain. Henry has not only survived the deep scars of being bullied, losing a parent as a teen, a life-changing medical diagnosis, and six major surgeries, but he has thrived in spite of them.

Henry, who grew up in Clarion County and graduated from Christian Life Academy in Seneca, has a genetic condition called Marfan syndrome, which is a connective tissue disorder that affects the entire body’s connective tissue. It is typically an inherited condition, but can also happen spontaneously, as it did in his case.

“My physical appearance has many of the marked signs of someone with Marfan syndrome. My height (6’9”) and skeletal build as a pre-teen is what brought this condition to light back in the early 90s,” Henry told exploreClarion.com.

Individuals who have Marfan Syndrome can have an array of symptoms that vary widely in severity; however, a primary concern with Marfan syndrome is the aorta, which is the main artery from the heart, becoming thin, developing aneurysms, and tearing.

Henry had his first open heart surgery in 1997 at the age of 18 to have his aortic valve replaced. Six years later, he had a second aorta repair for an abdominal aortic aneurysm in a surgery that required an incision nearly three feet long, spanning from his stomach, around his side, and up to his left shoulder blade.

He had another abdominal aortic aneurysm repaired in 2009, and in 2010, while shoveling snow, the aortic valve that was replaced in 1997 tore, and he was forced to undergo emergency surgery to have an artificial heart valve put in place of the previous flesh valve. Even then, his cardiac troubles were still not over.

In 2016, Henry suffered an aortic dissection, which is a tearing of the aorta, while in the shower. He spent five weeks in an Intensive Care Unit, nineteen days of which he was on a breathing machine, and a total of nearly two and a half months recovering between his hospital stay and his time in rehab learning how to walk again.

Currently, Henry is scheduled to undergo another aortic surgery on Wednesday, February 27, for an aneurysm on the arch of his aorta.

“This should be the last aortic surgery because the entirety of my aorta will be artificial pieces. It will have taken six aortic surgeries over a span of twenty-two years to get things completely replaced,” Henry noted.

While this kind of diagnosis and the related health issues can limit those who live with Marfan Syndrome, Henry hasn’t let it keep him from doing the things he finds most important.

“After each surgery, you have to find your new normal. I was never allowed to play sports in school, and my activities have been limited in my life. I have never allowed my limitations to stop me from continually moving forward in life or from being as productive as I can be,” Henry said.

“My wife and I have five children and our two youngest boys have Marfan syndrome. This was something new for my parents when I was diagnosed, but since I have lived with this condition it has helped us to be able to guide our boys on what to do and not to do. Our family, church family, and school family have all been very supportive and willing to listen and learn about our condition.”

In his book, “Custom Scars,” Henry looks at how each person’s scars, from whatever they may have faced in life, can help bring hope to others.

Custom Scars by Pastor Steve Henry

“The main theme of this book is about hope. We live in a world that just seems so hopeless, but this book stresses that we can still have hope in the midst of our pain. I use my life as the starting point for the reader to think about their life and how they can bring hope to others even during life’s toughest times,” Henry said.

“I want people to read and know that they are special the way they are and that God doesn’t make any mistakes. I address more than just Marfan Syndrome but also dealing with bullying, close family passing, kids with limitations, finding love even though you might not be ‘normal’ and accepting the scars that are in anyone’s life.”

According to Henry, much of his hope is based on his faith.

“Honestly, if it wasn’t for my faith I’m pretty sure I would feel hopeless. I believe, and the Bible supports it, that God doesn’t make mistakes and all life is valuable. It hasn’t always been easy. I’ve wanted to give up, but I always knew that God had a plan for me and that I will keep on going with His strength. The Lord has never let me down, He never will, so my hope comes from faith in Christ.”

The idea for the book first came to Henry while he was recovering from the valve tear he suffered in 2010.

“I felt impressed that I was to write a book and title it ‘Custom Scars.’ My father has always had a custom car project going, and the custom cars that he made were exactly how he wanted them to be. They weren’t what others may consider normal, but to my father, they were exactly right. I then relate that to my life, and although I may not be ‘normal,’ I am exactly how my Master builder (God) wants me to be. I am so valuable to him just the way I am with all of my custom scars. At the end of the first nine chapters, I have a few paragraphs that relate these two ideas of my Dad’s custom car (which is the front cover photo) and my custom scars.”

According to Henry, his ultimate gold for the book is to share his story, which is ultimately a story of hope found through faith.

Those interested in the book can visit www.customscars.org for more information, or purchase it through Amazon.com, where it is available in both print and digital formats.


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