My son was born with a congenital heart defect. At age three, he passed away. It was recently brought to my attention that my story was too upsetting for someone. They no longer wanted to hear from me because of it. Over the past seven years, this was the first time I had heard such a response. I was shocked and am still a bit taken aback by this. Have I been so fortunate to have only had this happen once? Does this happen to other bereaved parents?
This all came about while I was trying to share resources online that helped me with my son in regards to one of his health issues. As the saying goes, “No good deed goes unpunished.” This was the first time I had felt isolated and ashamed of my story. For a moment I thought there was something wrong with it. I took a step back and realized that this person, who I had never actually met in person, really only got a snippet of my story before deeming me a leper (or so I thought).
My story is incredibly tragic and sad. I live with it everyday. I do talk about my son because it’s part of how I cope (see my piece here). However, because of my son, I’ve learned so much and have met so many incredible people. My friends and family are a wonderful support system and I am so lucky to have them. I also have three incredible daughters who came after him.
I have always had a passion for philanthropy and I have been able to involve myself in two very special non-profit agencies that were able to help my son and our family. Through these agencies I am able to stay connected to him and to help others who are going through a tough time with their child, or helping children and adults with disabilities. Even though my son is gone, I am proud to be able to help others. I will gladly do it in his memory and pay forward all the help we received.
So, yes while my story is very upsetting, I will not be ashamed of it. Frankly, it is awful, but I will continue to honor him. I will also advocate for CHD awareness so that this maybe prevented for someone else. I will share my resources and continue to help my friends. This will not get me down.