If you are anything like I was 10 years ago, when you hear the term “post-traumatic stress disorder” or “PTSD,” you picture a soldier coming back from war. You picture this soldier with night terrors and rage as he or she deals with the traumatic images and experiences he/she may have encountered on the front line.
I talk with a lot of medical students and new parents about some of my earlier experiences with my daughter, but I don’t talk about them a lot publicly. There are a few things that happened in the first two years of being a mom that took me to a dark place. Once I found my way out of the darkness, I began trying to help others find the light as well. I’ve talked before about grief and the Stages of Adaptation and how these have an impact on parents of children with complex needs. Today I want to talk a little about PTSD.
When I used to tell our story, I could not get through it without completely breaking down. As I would tell people about her birth and the first time I saw her, it would feel like I was reliving the entire thing. I could smell the juice the nurses would bring me to help hydrate while pumping, I could smell the alcohol they used to wipe everything down, I could hear the 10 different alarms all chirping their own melodies, I could see the pain in my husband’s eyes. Everything was vivid and so real. As I told the story time after time, I was taking myself through it all over again. This happened for about the first two years. I would be at the grocery store and hear a sound that would set me off, or maybe a family member would say something that would trigger an episode. I avoided places and people I knew would trigger an event. I had no idea what was wrong with me. I thought I was just sad and didn’t know how to get past it.
One day someone told me I was experiencing PTSD. What? I am not a soldier, I am a mom. I had no idea someone like me could end up with that diagnosis. Trauma is a scary and real thing. My daughter’s intense delivery, and being told day after day that my child would not survive the night, was traumatic. With a diagnosis, I realized I was not alone and that many parents of medically complex children, and many parents of children who start life in the NICU, suffer from PTSD.
If you are reading this and thinking “That’s me, that’s what I am going through,” please know you are not alone and you can get through this. Once I understood why I was not able to get past the early events in my daughter’s life, I was able to address my issues, and I did eventually get to a place where I can tell our story without reliving it. Some people are able to work through this on their own, but therapy may be needed in many cases too. There are many therapists who specialize in helping parents of children with complex medical issues. If you are having a hard time getting through it, there is no shame in asking for help.
Marty Barnes is a native Texan and best known as Casey’s mom. While living in California for work, Marty and Tim Barnes welcomed their only child, daughter Casey, in 2006. Due to Casey’s very complex medical needs, Marty quit working in the IT field to be a full time mom and caregiver. The Barnes’ returned to Texas in 2008. Marty and Tim created the nonprofit Casey’s Circle after Casey’s passing in 2016. This organization offers many tools, resources, social opportunities for medically complex children, and bereavement events. Casey’s Circle also includes educational resources specifically designed for caregivers of medically complex children. In addition to her own organization, Marty is very active in the special needs community, volunteering with organizations such as Texas Parent to Parent, Mommies of Miracles and Hand to Hold. Marty writes articles for special needs publications, including The Mighty, Complex Child, and many others. Marty works closely with Austin’s children hospital and the Palliative Care Team to help improve family centered care and best practices for children with complex medical needs. In her spare time Marty enjoys movies and swimming. She never passes up a chance to share Casey’s story or to meet another parent of a medically complex child. Being able to connect and help other families through Casey’s story has become Marty’s mission and passion. Casey’s Circle Casey Barnes- blog & personal site
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