Name: Jeni Age: 24 Your defect: Hypoplastic Left Heart Syndrome w/ pacemaker
What is something you always wanted to be asked about you disease that no one has asked or something you always wanted to say that you haven't had a chance to? I guess it would have to be "What is the first thing that comes to mind when I wake up in the morning?" I think that this question is very important because it perceives what matters the most to me. I wonder about what God's will for me is and I want to fulfill His purpose for my life. I think about all the people I love and cherish. I think about all the heart families that I talk to and try to give hope to. I think about all my fellow CHDers of all ages that are getting up each day and fighting for another day of life. These are the things I live for. Now, I need to get out of bed and give it my all.
Give a short description how you perceive your life or felt about as corresponding with the following three words...
Past: Now that I look back to my past, I feel blessed. All of the challenging things I faced in my childhood have helped to mold me into the person I am today.
Present: I am overwhelmed with all the blessings I have in my life. I have God who is my rock and my strength to get through each day. I have a man who loves me unconditionally. I have a family and friends who never fail to be there for me. I never want to take a single moment for granted.
Future: My future is unknown...but isn't everyone's? Only God knows how long all of us are going to be here. I may have more open heart surgeries, or a heart transplant. All I know is if it's God's will for me, I will continue to beat the odds.
If you could give advice you wished someone told you when you were younger about growing up with CHD what would it be? The advise I wish I heard when I was younger is "Watch your back." When I was growing up, no one knew the after affect of having numerous open heart surgeries at a young age. I had open heart surgery on my 1st day of life and consequently have had chronic back problems ever since. This is because when they opened me up during my surgery, they had to split my ribs before they even get to my heart to operate on. When they finished the surgery and closed my ribs up, they were unable to match them up evenly like they originally were. So now, it's like my ribs are continually tweaked on one side and I have constant back pain and head aches.
What is or are your greatest accomplishment(s) in life (so far)? Being married to the man I love with all my heart because as I was growing up all I wanted to be is a wife and a mother.
What has having CHD taught you? I've learned to appreciate every breath God gives me. I have learned that no matter what I I want to do it for the glory of God. I've learned to not think of my heart condition as a problem, but as a blessing from God.
Briefly share your story of growing up with CHD: It is next to impossible to briefly share my story growing up with CHD...but I will try. My family was always good at teaching me to never be ashamed of my scars and heart condition no matter what. Despite getting constantly teased and ridiculed by cruel children in school, I always knew that it was a problem they had...I wasn't the problem. My family also made an effort to always treat me as normal as possible. They always saw a uniqueness that shined from within me. They always encouraged me to persevere and never give up. It was hard in my earlier years because I always felt like I was the only child my age with a CHD. Back then there wasn't internet to communicate to others. I only knew of 2 or 3 others around my age with my HLHS until I went to Camp Del Corazon at the age of nine. Camp Del Corazon is a camp for children and teens with CHD or acquired heart disease. I find a certain bond in these people from Heart Camp that I do not have with anyone else, simply because we understand one another's rare life challenges. We all have scars on our chests, medications to take, doctor appointments to attend, and heart surgeries to go through. It was a huge turning point in my life. I can honestly say that going to Heart Camp has been one of the best things to ever happen to me.
How has having CHD changed your life (other then the obvious health issues)? My heart condition is not just a part of me...it is who I am. I'm not sure what kind of person I would have become if God wasn't in my life. If He hadn't blessed me with all the love and support of all the people I am close to, I probably would not be here today. Each and every one of these cherished individuals has played a role that contributes to the formation of who I am; they all helped me have a positive outlook on my heart disease. However, the Being who by far made all the difference is my Lord and Savior. I always thought of my heart disease as a blessing from God despite what I went through, instead of feeling sorry for myself and being depressed. I know that I am blessed by God to have such a wonderful understanding of the beauty of life. This in turn, has given me the desire to live every single day as if it was my last.