Ever since I took an interest in writing (since the age of twelve) I've been harped on to write about my heart condition. Initially, I fought it – still do sometimes – because it's something I live with that I don't want to live with and when I write, I want to write about topics that bring me joy and might help and inspire others. Surprisingly, my heart condition does not bring me joy. Even more surprising, I'm kind of expert on it because it's something that fits so seamlessly into my life and basic decisions I make that I hardly notice.
What I have noticed within the congenital heart defect community is that we all have questions - and we all want to help one another, with our money, time, political efforts, networking, volunteering, etc. but who is answering the basic, every day questions of living life and how to deal with mundane issues that are most often taken for granted amongst "healthy" people? Questions about being in the work force, college, dealing with peer pressure, being teased as a child, trying to fit in, keeping up with friends, physical education, academia professionals who didn't "get it", doctors who did not listen, doctors who DID listen, long hospital hours, recovering from surgery, depression, etc. are only topics that merely scratch the surface on what I have experienced and am happy to discuss.
What knowledge I may possess might help others, specifically, people with loved ones (parent/children, friends, etc) living with CHD, those that work with people living with a congenital heart defect, and young folk with CHD who are starting to enter adulthood. You may just be a curious passer-by intrigued by this post and want to ask questions. Everyone is my guest and all questions are welcome. There is no subject that is taboo; if I don't feel comfortable or experienced enough to answer your question, I will state so plainly.
I do not pretend to have all of the answers, and I make no guarantees. What I do promise is availability to answer your questions as open and honestly as based on my personal experience. That is all any of us can promise. My only hope here is that perhaps my answers will help someone, and at the very least, others will know they are not alone.