You all know my story. I was born blue. I was born during an era where new medical technologies that have transformed the world of congenital heart disease were just beginning. I became the 100th baby to undergo the switch surgery that Dr. Aldo Castaneda invented in 1983. The oldest person who has had my specific surgery is only 5 years older than me and some people in between have unfortunately not survived. I’m not writing this to scare you or myself for that matter, I’m just becoming increasingly aware that I have to live with this disease for the rest of my life. However long that may be. That seems incredibly morbid, but it’s the reality I live every single day and that is why I have chosen to live life the way I do.
Now, let’s discuss the last 4 years. I had my most recent open heart surgery in January 2014. The year after my surgery was the best year of my life. I traveled the world, went to business school, started dating my now husband, launched Project Happy Hearts and I felt healthier than I had in years. Then my heart symptoms came back…
Over the past two years I have undergone three procedures, a pacemaker surgery, and many nights in a hospital room. I’m fresh from this last surgery (almost 6 weeks strong!) and I’m praying it will make me feel better, but am also aware that it’s not a cure.
All this said, I am so incredibly grateful for the life I live. I have an amazing husband, wonderful family and friends, and get to promote heart health and happiness for a living. I began Project Happy Hearts with the message of “What makes your heart happy?” and 4 years ago I thought that meant packing a bag spur of the moment to head out on an adventure. Today that still makes my heart happy and I still think that spontaneity is a wonderful thing, but this message means a little different for me now. If someone were to ask me today “What makes your heart happy?” I would answer community. Community is so very important to me because the reality is I can’t handle living with congenital heart disease by myself. The people who genuinely ask how I am, simply show up, or send me a warm message are the people who I have chosen to do life with. Whether I live 4 more years or 40 more years the people I am surrounded by will always make my heart the happiest.
I have been given a different lens on life than most people my age have and I feel incredibly fortunate for this. I will continue to face all the challenges that come along with heart disease fiercely and always surround myself with people who inspire me to keep fighting. Project Happy Hearts has given me a community that I so desperately need and I can’t wait to see it grow. The last 4 years have been beyond beautiful, but also so very hard. Congenital heart disease continues to shape me into the woman I am today, but I will never let it define me.
Please join me in wearing red this Friday, February 2, 2018 in honor of all of those affected by heart disease.
Thank you all for hearing my story, sharing my story, and being a part of my story.