If you are anything like I was 10 years ago, when you hear the term Post Traumatic Stress Disorder- PTSD you picture a solider coming back from the war. You picture this soldier with night terrors and rage dealing 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 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 try to help others find the light as well. I’ve talked some about grief and the Stages of Adaptation and how these impact parents with complex children. I will do another post later to talk about those more. Today I want to talk a little about PTSD.
When I use 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, about the first time I saw her, any detail (good or bad) it 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, I could see the pain in my husbands 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 2 years. I may 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 medically complex children, and many parents of children that 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 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. 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 special needs and/or PTSD.
When I finally admitted my struggles to my doctor and was screened for mental health assistance, the person screening me told me that my trauma was not as great as a soldier’s or a survivor of sexual assault. I felt so shut down. I shared his words with the therapist I went to. She was angry! She told me that it isn’t the experience itself, but how your body responds to it. Living through 4.5 months in the NICU (my son was born at 23w2d) has changed me. I suffer from anxiety and PTSD. The hardest part is that after three years most people think I should be over it. I wish I didn’t feel the impact almost daily.
Amy, I am so sorry that your doctor was so dismissive. I get so angry when I hear things like that. Everything we go through as parents of children like ours is so subjective. Just because one person’s struggle may seem insignificant to someone else, does not make that person’s struggle any less real. We are all going through the same emotions as parents regardless of the specifics with our child’s condition. I am glad that you found a therapist that sounds like she does understand and is there to help. Talking to other parents and understanding why I was going through all of the emotions I went through (and still go through) has helped me a lot. I have still have very dark days/weeks/or even months, but knowing why I am feeling the things I feel has helped me to process those emotions and fine my light much more effectively. I hope that you can find your light and please know you are not alone!
I am going through this at the moment, thank you for sharing your story, I have felt alone. Thank you again. X
Emdr. Google it. I had ptsd. Not anymore.
http://www.emdr-therapy.com/emdr.html
So point on Marty! I just shared (with Sherry) recently that we were looking at old VHS tapes (yes, we’re old!) to see what was on them. There was a tape that had Daniel in the NICU when he was going in for his shunt placement. I literally started to feel ill and wanted to run away screaming……some things are buried deep (this was 22+years ago).
I think the person that dismissed your suffering the way he did was an over educated fool. How can anyone measure the intensity of another person’s pain based on anything. He has obviously never felt the pain involved in being a parent who has a child in distress (for lack of a better word) and know the devastating pain of emotions involved. Learning to cope and move forward is a task that person that presumed to judge you might never be able to master.
You and your husband are remarkable people and appear to be coping extremely well. May God Bless you all for giving your daughter the best life that love can give.
I have had a violent life ,not just one episode but too many to count , but it seems like social security SSI ,disability claims takes PTSD lightly I’ve been denied twice now ,i also have severe anxiety ,panic disorder and multiple physical problems but yet they tell me my condition is not severe enough to be disabled .how can I work around people with panic disorder and paranoia due to PTSD ,i feel like whoever’s making these decisions should be fired or at least investigated ,i think they have a certain amount that can be approved each year and they play (any many miny Moe )I have mote than enough medical records showing I have these condititions but yet they tell me I am able to work and not disabled ,i will keep appealing in till the end and I think something needs to be done about this matter I call this dirty goverment.