Living; no Thriving with Congenital Heart Defects CHD

" has been a very hard road, and the journey is not ending anytime soon.  Those of you who are growing up with heart disease know exactly what I’m talking about...." 
-Andrea Buginsky, Heart Patient

I’m 36, married and a college graduate.  I earned my BA in journalism from the University of South Florida in May 2007.  At the time of graduation, I had no idea what I was going to do with my degree.  I knew I wouldn’t be able to go out and get a full time job writing for a newspaper or magazine.  I wanted to freelance, but I knew that meant searching out companies to write for and things to write about, and that I would have to be able to work at my own pace, and do everything from home via e-mail, snail mail and phone.

The reason for this is simple:  I am disabled.  No, I’m not in a wheelchair.  I was born with a heart condition.  It has limited my life in various ways, and made me miss out on many things, but it hasn’t been completely terrible.  After all, I graduated from high school and Junior College, got married and graduated from USF.
But it has been a very hard road, and the journey is not ending anytime soon.  Those of you who are growing up with heart disease know exactly what I’m talking about.  You know what it’s like to miss a lot of school because of how easily you get sick and how long you stay sick because you can’t take the usual medicines to make you feel better.  You know what it’s like to feel left out because you can’t participate in all of the different activities with other kids.  And you know what it’s like to have to go to the doctor so frequently, take medicine constantly and be in the hospital far too often.  What a way to grow up.”

This is the opening of my autobiography, “My Open Heart.” I wrote it for adolescents growing up with CHDs and other chronic illnesses, but it’s also aimed at parents of children who were born with CHDs. I wanted to tell my story from a survivor’s point-of-view, to show that, although there are difficult times and struggles to get through, there are good times as well. I feel having grown up with CHD has made me a strong person. Now in my 30s (37, to be exact), I have overcome three open-heart surgeries, many procedures, and several grueling trips to the hospital. But each one has made me stronger. They have made me who I am today.

I’m not sure who I’d be had I not grown up with CHD. It’s a life I can’t imagine. OK, it’s a life I’ve definitely dreamed of, but can’t really imagine, not completely. Once you have been living with a certain condition, it’s hard to know what it’s like living without it.
I believe the same can be said for parents of children with CHD: You can never imagine what it would be like to not be the parent of a child with CHD. As an adult, I can look back at my experiences and see them through my parents’ eyes. They are incredible. I can’t imagine ever being in their shoes. As hard as things were on me, I never want to experience their point-of-view. 
For parents of children with CHD, I hope you’ll look to me and other adult CHD patients as a positive sign that your children will endure and thrive growing up with their defects. They may even become someone you never imagined them to be because of all they’ve thrived.

I’m a member of the Facebook group Adult CHD Patients Answering CHD Parent’s Questions. I hope you’ll join us and feel free to ask us any questions about your child’s defect, and how it may affect his or her life. We are here to help you survive as well.

Andrea Buginsky is a freelance writer and author. “The Chosen” was her first book, and was followed by “My Open Heart,” an autobiography about growing up with heart disease. “Nature’s Unbalance” is the second story in THE CHOSEN series. Andrea plans to write more in the series. She’s already done with the first draft of book 3 and has a concept for book 4. You can find Andrea on her website, Andi’s Realm. Her books are available at Amazon and Barnes & Noble. Remember to sign up for Andrea's newsletter to stay up-to-date on all of her exciting events.


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