“I am not my defect”

Project Description:

Everyone has “something”. That one insecurity that is woven into the fabric of their being. We try to hide it, fight it, and deny its influence on their life. I just happen to have been born with my something. In some ways I feel lucky because it’s been with me since birth, so I haven’t really had to adjust much to existing with it. What has happened throughout my life is an internal struggle to figure out how to define myself with and without it. The What I Be project was the jumping off point in embracing my “something”.

I was born with complex congenital heart disease – 5 different defects in my heart. The doctors told my parents to take me home and keep me comfortable while I died. Instead, they choose to try an experimental drug that could keep me alive long enough for surgery. I’ve had 4 heart surgeries and countless numbers of heart procedures. From the surface I look normal, young, and healthy, but underneath my clothes I bare the story of a body ripped open multiple times in hopes of survival. My scars, especially my sternotomy “zipper” scar that runs down the center of my chest is something I am very proud of. They’re my battle scars. The evidence of my determination to LIVE.

I’ve fought the reality of my disease many times. I never want to be viewed as a victim but seek understanding from others. I want people to know about congenital heart disease, the number one birth defect, and I want them to know who we are.

I’m a wife.
I’m a Mother.
I’m a Nurse.
I’m a friend.
I’m an educator.
I’m an advocate.
I’m a family member.
I’m a singer.
I’m a writer.
I’m a survivor.
I am Not my heart defects.

It does not define all that I am, but it is a large thread in the woven pattern of me. It’s just one aspect of who I am. I can no longer fight it or deny the impact it has on my life.

It is what I be.