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.

Casey slept in the middle of our bed. I had to position myself just right so that I would not pull on her feeding tube or pulseox when I moved. Some nights I had to watch for oxygen as well. I was able to sort of dislocate my hip and kick my foot out to turn on suction throughout the night without actually getting out of bed. Most nights Casey would sleep with her head on my shoulder.

Casey is non-mobile, but somehow she would find a way to turn nearly sideways at night. We upgraded from a queen to king and that bought us some time, but my side of the bed was getting smaller each night. I eventually ended up spending many nights at the foot of the bed. I felt more like the family dog than the mom.

Around Casey’s 4th birthday I had had enough. I HAD to get some sleep and it was time to get a night nurse. Tim did not want a night nurse at all. He was not the one up all night suctioning, medicating, feeding, etc. so of course he didn’t see the need. This was one of the times I used my veto power and told him there was not discussion, it was happening.

We started with 5 nights a week, 8 hour shifts. The nurse would come in at 10:30pm and leave at 6:30 the next morning. The first few shifts were awkward. I stayed up the entire night with the nurse and would tell her what every sound meant. I showed her repeatedly how to suction, how to prepare Casey’s formula, when to do certain things, etc. I was very excited about getting to sleep at night, but I was also terrified. After I was sure the nurse was trained to manage Casey’s needs (after about a week) I tried to go to bed. I would sleep for maybe an hour then wake up in a panic. I would run to Casey’s room to make sure she and the nurse were okay.

Each night I would sleep a little more than the night before. I trusted the night nurse to care for Casey and that she would wake me if anything happened, my body just didn’t know how to sleep anymore. Eventually I made it through most of the night without waking up. It had been more than 4 years since I had really slept. I had no idea how sleep deprived I actually was until a few good nights of sleep. I am still kicking myself today for not getting night nursing sooner.

Having night nurses took some getting used to. I still don’t sleep through the night, and all of the nurses know I will pop in from time to time. We have had a few fall asleep, and that is a fire-able offense regardless of how long they have been with us.

It took a little while to get Casey used to sleeping in her own bed and in her own room. Once she adjusted though, she loves it. She refuses to sleep anywhere else, and she doesn’t let anyone sleep with her.

Before we had night nursing we were very creative with our sex life. We would hook Casey up to the monitors and baby monitor and then quickly go to the other room before she woke up. With day and night nursing, there is most often someone here. Adjusting to having a sex life with people working in the house is tricky. There is a really funny scene about this in ‘Extraordinary Measures’. We are very aware of any noises, where the nurses are, and if there is a chance they may need something, then sex has to wait. Lately Casey has needed oxygen and the loud concentrator has been helpful.

It takes a lot of adjusting, but sleep is so important. My health when I am able to get some sleep compared to those 4 years without is hugely improved. If you have a child that needs care throughout the night, I strongly urge you to try and get at least some help.

This article was originally created for and published by Pediatric Home Service