PEOPLE AT THE HEART OF THE MATTER 

When Alysa was young she was an honor roll student, ballet dancer on Pointe, swimming champion in country club competition, dance team member in high school, Editor-in-Chief of her high school newspaper. As an adult she graduated with a Baccalaureate in nursing at Westminster College, started her career in nursing working in the O.R. She has designed and built her own home, had two healthy and uncomplicated pregnancies resulting in two perfect and healthy children. She now enjoys gardening, pottery, hiking, camping, snow and water skiing, scrapbooking, sewing, painting, and especially playing with her children. Twenty Nine years ago my mother gave birth to a blue baby girl. Panic set in as the bluish color refused to turn to pink suggesting that there was poor oxygenation.

The doctors worked quickly to transfer the baby to the pediatric hospital where the diagnosis of Transposition of the Great Vessels was diagnosed. Although hopeful, the doctors painted a not so dreamy reality of what life would be like with a child with congenital heart disease. Then all my mother could do was sit back, watch, and pray for the best.      

That was then, and I am that baby. I am often asked what it has been like to live with Transposition of the Great Vessels. It is simply living. I know of no other way. Transposition was not something I acquired along the way, it has always been there. When my mother was finally able to take me home after months in the hospital she was given the best advice that ever existed. She was told by one of my doctor’s to raise me as a child, not as a china doll, not as a sick kid, but as a totally normal healthy child. My mother did that and today I live my life as normally as anyone else with an occasional reminder that oh yeah, I’m not completely “normal”.

I have definitely had my ups and downs in life with healthy times and sick times. Plenty of doctor’s appointments, test, labs, medications, and surgeries; but I try to let that be a small portion of my life. It is not to say that they can be forgotten, after all, all the experiences of one’s life culminate to make us what we are. Rather than defining me as a congenital cardiology patient they have defined me as a strong person able to face some of life’s most difficult situations with hope, strength, and a sense of calmness. The experiences have allowed me to find appreciation for everyday that I spend in healthfulness, because there are days that are less healthful than others.

I love it when people who know me a little bit find out that I have a “heart problem”. They always seem so surprised and I love to see that because it gives me a sense that I am not painting that reality that was given to my mother so many years ago, that I am strong and healthy. People see me enjoying life as anybody should. I enjoy activities such as snow and water skiing, swimming, hiking, gardening, and simply playing with my children. People see me as a mother, or as a nurse, or as just another person on the street. They don’t see me as someone with a heart problem.

Living with a congenital heart disease is not without its trials. I have definitely had a lion’s share of them, but it can be with its splendors. It has made me different, a word I hated as a teenage striving to be just like my friends without scars on their chest. Today I realize it has altered my way of thinking to be more optimistic, and thankful for life. If there was one thing I could tell every person that has congenital heart disease it would be this: Live each day to it fullest and without worry, to completely forget about what the future may bring – good or bad; and to focus on the here and now. By doing this I have been able to enjoy my days of healthfulness, and get through my hard days much easier.