#Heartbeat: Heart Hero Ben

Written by: Amanda Lawson 

I would like to give you a glimpse into why the heartbeat of my family is so strong.

It all begins with the birth of a little boy, many years ago who was born with a broken heart. My husband was born with a Congenital Heart Defect called Transposition of the Greater Arteries in the late 70s. Due to lack of technology then, repairs to his heart were very invasive. He had open-heart surgery at eight months old, after waiting, without success, for him to reach a goal weight. He was called a blue baby, because his heart didn’t pump oxygen to the rest of his body. His health continued to worsen. If he had any chance to live, surgery was the only option. As a mother, I can’t imagine seeing my baby boy dying before my very eyes. Seconds turned into minutes, minutes turned into hours. When the full 10 hours finally passed, the doctor revealed that the surgery was a success!

Growing up, my husband spent many dreary days, and sometimes even more agonizing months, confined to a hospital bed and the four walls of that dreadful room. He had issues with both fine and gross motor skills as a result. He went through what seemed like never ending occupational and physical therapy sessions to learn how to do simple things that most of us take for granted like holding a pencil or buttoning his shirt. When most little boys are exploring in the backyard, pretending to mow the grass with a plastic push mower, my husband was fighting for his life. A fight that has continued even to this day! Unfortunately, he had learning disabilities after such a long, arduous surgery, as well as speech problems. He went into cardiac arrest as a child and a trach severed his vocal chords. However, he had a resilient spirit that never gave up and a supportive family that wanted him to have as normal a childhood as possible. He even changed his name when he was eight years old because he couldn’t say his given name without difficulty. Instead of continuing to worry about how to say his own name, he solved the problem. That resilient spirit continued to run through his mended heart and kept him focused on what’s important…living!

Ben joined the Boy Scouts and worked his way up to the rank of Eagle Scout. This is a huge accomplishment for any scout, but with so many challenges he was offered countless accommodations, which he declined. He always wanted to do things the same way everyone else did, even if it took him twice as long with enormous struggle. No matter the challenge, his heart was not going to be the reason he didn’t accomplish his goals! School, as I mentioned, was another battle in and of itself. Reading was the worst! As an educator myself, I know that learning and teaching a child to read is more of a miracle than we recognize. It’s not easy at all! Hopefully everyone has at least one, heartfelt school story to share. My husband does not. He even told me he wanted to check out a book that was above his reading level from the library and the librarian said she would only let him check it out if he could read to her from the book. He was heartbroken. He was unable to check the book out and only wanted it so his mom could read it to him. Dyslexia was the learning disability he struggled with, along with his speech. He always had extra help in school and attended a speech class even through college. In college he joined the group for the Blind and Dyslexic that would allow him to receive his textbooks on tape, so he could listen while he read his assignments. This was a very successful study strategy for him. He worked diligently giving his whole heart toward his education and even earned a graduate degree beyond his undergraduate degree.

Ben has always wanted to work hard; not allowing the negative remarks others made dictating the outcome of his journey. The remarkable thing is that, according to the doctors, he wasn’t even expected to live. If he did live, he would be a vegetable and have multiple heart surgeries leading up to a heart transplant eventually. God has had his hand on my husband even before he was ever born. These challenges were things that would make him stronger and make him who he is today. His heart was mended during that long surgery so many decades ago, but how it changed him is still changing lives today; which is what makes my heart burst to tell. Trips to the cardiologist have been too numerous to count. But there was a specific visit to which I remember every single, heart wrenching detail. Seven years ago we made a 200 mile journey by ambulance to the hospital where he was admitted for 5 days. The doctors were ready to list him for a heart transplant at that point. I was simply going through the motions. I had to leave my two babies in the care of my mother while I attended to the needs of my husband. My heart was breaking; BUT GOD had another twist in the road for us. The doctors wanted to run one more test. When the test results came back the doctor had nothing to say, BUT GOD. His heart had improved, which is basically unheard of. I could feel my own heart first sink into my throat, then jump out of my chest all in the same breath, which led me to my knees thanking God. I have never feared being a widow at such a young age, no fear for myself, but I have always wanted my children to grow up with their father.

My husband always tells me he is going to walk our daughter down the aisle on her wedding day. A promise that I know is in the Lord’s hands, but I’m selfishly going to hold him to it. Currently, my husband is nearing 38 years old. He’s not in great health and we know it. Yet he has not had another heart surgery since he was an infant. His cardiologist cannot medically explain why his heart is still functioning without having any repairs to the original surgery, BUT GOD! Our family is what keeps him going. We have two perfectly healthy children, with perfectly healthy hearts. To say we are blessed is an understatement. Fortunately, my husband’s broken heart has grown our hearts during the process. We don’t take for granted the ability to go out to eat together, to have a family movie night, or go on vacation. We take lots of pictures and make even more scrapbooks! We count our blessings because truly, none of us are promised tomorrow. Cherishing every moment, even the things that seem so insignificant like a car ride to school or Monday night football, because it may be the last moment. Living in the present and giving God the glory has helped us take what could negatively impact our family turning it into a positive experience. I will leave you with our family motto, which comes from Proverbs 4:23, “Above all else, guard your heart, for everything you do flows from it.” Guard your heart, protect it. It’s the most precious gift you can both give and receive. 

12/16/16

Posted in: Advocacy, Awareness, CHD, Heart Hero of the Month, Heart Heroes

Leave a Comment (0) ↓