If you are anything like I was 10 years ago, when you hear the term "Post Traumatic Stress Disorder" (PTSD), you picture a soldier coming back from the war. You picture this soldier with night terrors and rage stemming with the traumatic experiences they 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, Casey, but I don't talk about them a lot publicly. There are a few things that happened in the first 2 years of being Casey's mom that took me to a very dark place. Once I found my way out of the darkness, I tried to help others find the light as well.
I've talked some about grief, the Stages of Adaptation, and how these can impact parents with children who have complex health needs. (I will do another post later to talk about those more.)
Today, I want to talk a little about PTSD.
When I used to tell Casey's story, our story, I could not get through it without completely breaking down. As I would tell people about her birth or about the first time I saw her, mentioning any detail, good or bad, was as if I were there 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. And I could see the pain in my husband’s eyes. Everything was so 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 couple of years. I might 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 that 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 that I was experiencing PTSD. What? I am not a soldier; I am a mom. After talking with the person more, I realized I was, in fact, suffering from PTSD. I had no idea that someone like me could end up with that diagnosis.
Trauma is a scary and very real thing. Casey's intense delivery and being told day after day that my child would not survive the night was very traumatic. I realized I was not alone, and that many parents of children with medical complexity or 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 Casey's life, I was able to address my issues and I did eventually get to a place where I could tell our story without reliving it.
Some people can work through this on their own, but therapy may be needed in many cases. If you are having a hard time getting through it, there is no shame in asking for help. There are many therapists that specialize in parents of children with medical complexity and/or PTSD.
Use the Find Services, Groups and Events section to locate a counseling resource or someone that works with PTSD in your area.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.