Life Goes On

It was February 1996. We'd done it. We'd made it through the first year of marriage. This included a diagnosis of Multiple Sclerosis, a high risk pregnancy, a head-on auto collision, premature labor and delivery of our baby girl, followed by an aortic dissection and open heart surgery for me. So what else is there to do, but go ahead a open some very belated Christmas presents? It was actually the last thing we felt like doing, but the lights were still up on the house and our tree, and friends and relatives were anxiously waiting to have us all back together. Christmas was here, and I was happy just to be alive and that our baby was healthy. Did I mention, she had colic? She was not tolerating the formula and I could not breast feed because I take blood thinners. So, we had to keep trying different types of soy formula/cereal blends until we discovered one that would fill her up and help her sleep longer, yet not upset her stomach. All we wanted for Christmas that year, was a good night's sleep.

During that same year, my husband was laid off from a great company in industrial automation that he'd worked with for the previous five years. So, to support our family, he took the only position he could find, working as a third-shift electronics technician for a company that made tortilla chips. I went back to work for a little while as as an administrative assistant for a corporate accounting firm, but I continued experiencing a lot more neurological issues due to Multiple Sclerosis; daily struggles of chronic pain, vision problems, and trouble keeping my balance, and periods of complete numbness that rendered my hands useless to do my job. It was severely affecting my ability to work consistently. The firm loved my work and had called me in for a promotion, but I tearfully explained to them that I would have to decline because the frequency and intensity of my symptoms and all of the medical visits were making it impossible for me to consistently perform my duties.

As my symptoms worsened, my mother began driving the ten miles out to our house three days a week to help me when flare ups were particularly bad, but after a while it became apparent that I would have trouble being able to work a nine to five with any dependable regularity. I decided to apply for disability. I applied three times was denied twice. Finally, in 1998 on the third attempt, with better documentation and witnesses, I was approved.

During the next few years, we were able to begin settling into a regular rhythm of life. My days were filled with child care, household duties and endless doctor appointments. Both of our youngest were in school, while their sister lived in Toronto with her dad. Our middle child Holly was very tall and had some physical characteristics that pointed toward her having Marfan syndrome,. like me. So, we took her to see a geneticist to see if she had inherited the same connective tissue disorder that was responsible for all of my heart problems. He told us that it seemed likely that she did have it but we would know more once she was a bit older.

She had previously had an episode of SVT (Supra Ventricular Tachycardia) which is an extremely rapid heart beat in which only the Atria (upper two chambers of the heart) flutter continuously and there is little or no activity in the lower chambers. Her heart rate was clocked at 256 beats per minute. They took her into the emergency room and had to stop and restart her heart with a series of injections. It was extremely frightening for my me and my husband but she was watching the Disney movie Hook the entire time and was oblivious to the tension around her.

By age eight we decided that we were not wanting to wait any longer and we took her in to see the pediatric cardiologist and an endocrinologist. The diagnosis confirmed our suspicions. Holly had Marfan syndrome just like me, but there was good news. Because it was detected early, there was a definite chance that with proper monitoring, beta blockers to regulate her heart rate and being sure to avoid strenuous activities, she would be able to live a long and productive life.

It was around this time that my cardiologist began to notice something on my regularly scheduled echo cardiogram. There was another aortic aneurysm. But this one was even bigger than the first one. To make matters worse, There was no doctor in the Atlanta area qualified enough to remedy the situation. There were only two surgeons in the United States at that time who could successfully perform a surgical intervention in cases like mine. In fact, there were only a handful of people alive who had received this surgical procedure and lived.

One of those gifted surgeons was Dr. Joseph Coselli at Baylor Medical Center in Texas and his protege, Dr. Thomas Martin at Shands Medical Center in Gainesville Florida. I live in a suburb of Atlanta, Georgia, so the obvious choice was Dr. Martin. I was petrified of the idea of such a radically dangerous surgery, so Dr. Martin put me in touch with a young man who had my disease, and had no more natural aorta left in his entire body, because it had all been removed and replaced with Dacron tubing and grafts. I spoke with him over the phone for about ten minutes and then I told my husband that we were about to be headed down to Florida to meet the surgeon who was going to save my life for the second time.

I'll be honest, after everything I'd been through following Casie's birth, I was scared to death. But my husband held me tight and reassured me, that whatever needed to be done, we would face it together. That Sunday in church, I stood to my feet and asked the congregation to pray for our family and specifically for me because I was so anxious. Our church family gathered around us and prayed earnestly for our family and everything we were about to endure. When I got back in my seat, I asked God to show me a scripture that would give me comfort in the days and weeks ahead, and this is what I read;

Be strong and courageous

Do not be afraid Do not be discouraged

For the Lord your God

Will be with you...wherever you go

Joshua 1:9

...and with that, we were off to Gainesville Florida, and hopefully; another miracle.

Part five of this series, COMING SOON...