Top left picture is my AAA from 2009.
Bottom left pictures are my Chiari 1 Malformation from 2012 and my IV pole from my 2016 dissection.
Directly above is my beautiful, but sometimes goofy, family!
Since the winter of 2010 those two words, Custom Scars, haven’t left my heart or mind. I believe that God inspired those two words as a vivid description of who I am and how I’ve been made. I was 12 years old when I was diagnosed with a genetic condition called Marfan syndrome. It is typically passed from parent to child, but a small percentage of people diagnosed with Marfan syndrome just sporadically have it. That was the case with me.
When I was first diagnosed in the early 1990’s, the phrase that the doctors used to describe my diagnosis was that it was a freak mutation. I know that’s not what was all said, but those two words stuck with that 12 year old kid. Throughout my junior and senior high years I watched the basketball team from the sideline because my dreams of playing sports were gone. On top of that, the biggest supporter in my life, my mother, died of cancer when I was 15. She was only forty seven.
I made it through high school, but then in January of 1997 I had to have my aortic valve replaced. Although I hadn’t been able to play “organized” sports in school, I still played in 3-on-3 basketball tournaments, rode the biggest roller coasters I could fit onto, and bungee jumped. Things that weren’t the best idea for me to participate in. After my valve replacement as an 18 year old, I headed off to Kentucky Mountain Bible College.
I did have two pericardial effusions those first six months of college with one of them evident of God’s hand in my life. I had close to 3 liters of fluid around my heart and that pressure should have caused my heart to stop beating. My heart was like the Energizer bunny and it just kept going and going. I know that the "going" was only made possible because of God's hand of safety on me. It truly was a miracle.
After graduating college, my wife and I moved to Papua New Guinea to help start the Papua New Guinea Christian Broadcasting Network and its flagship station Wantok Radio Light. After one year of missions work, we came back to the states for Christmas and to have my yearly checkup. At that checkup in January 2003 an AAA (abdominal aortic aneurysm) was found. I was prohibited from flying back to PNG, so my wife and step-mom flew over to pack our belongings and close that chapter of ministry in our lives.
After a year of recovery, I was hired in Syracuse, NY at the Mars Hill Network as their Production Director. We had three wonderful years of ministry in central New York where our next two children were born. God then opened the doors for us to move much closer to where I grew up and to become the pastor of Victory Heights Church in 2006. That is where our family still is today and where our final two children were born.
Since being at the church, I have had another AAA in 2009 and then on December 5, 2010 one of the leaflet's in my aortic valve tore when I was pushing snow. (My wife says I was shoveling, but I prefer to say it was just pushing.) That life altering event set me on the course that I knew I needed to share my story with all who are willing to hear.
Life is so short and we live in a world that seems to be hopeless. I have felt hopeless during seasons of my life too, but I want to encourage you to trust God and to fight, even when you feel like giving up.
In January 2013, I also had brain surgery for a Chiari 1 Malformation which eliminated the debilitating headaches I had been having for two years. I tell people that brain surgery was the easiest surgery I have ever had!
May 27, 2016 was when our life got flipped upside down. I had an aortic dissection. Due to massive complications I was in the hospital and then rehab for a total of 69 days straight. I only saw my children twice during that span. Shortly after being discharged it was found that I was in CHF (Congestive Heart Failure) and ended up with a defibrillator being surgically placed in the summer of 2017.
On February 27, 2019 I had what should have been my final aortic procedure. My aortic arch, to this point, was the only piece of my aorta that wasn't an artificial piece and it had a small aneurysm at 4.5 cm, so we decided to have it replaced before it reached a serious size. Unfortunately due to the other artificial pieces, my heart's positioning, and scar tissue, my third open heart procedure was only able to partially fix this area. They bypassed my right subclavian artery and my carotid artery into a previous graft.
On May 15, 2019 they went through by my neck on the left side and bypassed my left subclavian artery. Then on May 16, 2019 they did a TVAR procedure where they put a graft through my groin, up into my aortic arch, and were able to open it up connecting both ends to two other artificial pieces.
This effectively completed my entire aortic replacement over the span of 23 years with a total of five interconnected pieces. Trusting this is now complete and stable.
As you can see, I have many scars on my body. They are covered most of the time, but I have over 5 feet of scars plus over a dozen smaller scars where tubes and wires have been removed. Two of my five children have Marfan syndrome also. They will indeed have scars too.
Although life is full of scars, I want to again encourage you not to give up. Not to lose hope. God made each of us special and He doesn’t make mistakes. I am grateful for my Custom Scars because they make me the person that I am to be. I have to be honest, it hasn’t always been easy. I have asked God some hard questions. I even told Amanda after one of my surgeries that I just needed to die and she needed to find a healthy man to marry. Trust me, I know it’s not easy but throughout my years I know, beyond a shadow of a doubt, that God doesn’t make a mistake and I am perfect to Him.
I would like to hear your story and I will respond the best way I can. You can email me, connect through my blog, or go to the Custom Scars Facebook page. I love what 2 Corinthians 12:9 says, “My grace is sufficient for you, for my power is made perfect in weakness.” (1984 NIV)