In the moment, right in the thick of things, I didn’t have a word for it. There wasn’t one word to describe the pain that surged through my body in ebbs and flows. Not just the emotional side of it but the physical reactions to the complete lack of control I had in watching my child suffer. I’m not referring to roller coaster of emotions I endured during his hospital stay. I’m not referring to the intense fatigue and fog that overtook me nor the physical pain that comes part and parcel with giving birth.
When I was in it, I didn’t have time to truly feel. To really sit back and focus on what I was experiencing. I cried, but did I truly own my grief? I was so excited to be a mother for the first time, but did I allow myself to experience the elation I wanted to express?
I am not referring to any of those interwoven feelings that came and went every single day for the entire duration of our NICU experience.
I’m referring to the anxiety that consumed me after Mr. T. came home.
The constant fear that overtook almost every second of my life after he was well enough to be released from the hospital.
I was afraid that I wouldn’t hold him up long enough after feeding him causing him to reflux and choke. Every time he coughed I held my breath. It actually sounded painful. I grew increasingly concerned that his coughing could cause his operations scars to open. His barks reminded me that his trachea was collapsing and I wondered if it was possible for his trachea to collapse and not return back to normal? Would he die? Now that he was home and wasn’t attached to monitors and tubes to help him breathe and eat. Could I keep him alive?
I tried for a long time to convince myself that this was a normal level of concern for a first time parent.
It was not.
My first sign that this was something bigger was when I would wake in the middle of the night gasping for air. When my body overtook my mind, I would sleep fitful sleeps, half sleeping, half listening to him breathe. Dreaming dreams that could be confused with reality. Dreams where Mr. T. was back in the hospital, alarms sounding, nurses and doctors rushing in pushing me out of the way. Leaving me to wonder where my place as his mother really was. I dreamed of Mr. T. crying in his infant carrier, in the middle of a snowy field where I couldn’t get to him. No matter how fast or how hard I ran I would never get any closer. The sound of him drowning in his own fluids haunted my nights for months, maybe even years after he came home. I would sit straight up in bed gasping so loud it would wake my husband. I cried in my sleep. I begged. I would physically grab and hit Mr. C in my sleep. I tossed and turned, first feeling cold, then feeling sweaty. Every night I fought off bogus bad guys that were slowly creating cracks in my mind and in my psyche.
I checked if he was breathing each and every time I woke up. I felt his chest. I flashed a light on him to make sure his chest was rising indicating that he was sleeping in peace. I never truly settled.
During the day I felt nauseous. A sick feeling sat in the pit of my stomach all day long. My body would feel hungry, especially when I was pumping, but I felt a queasy feeling throughout my body day in and day out. I thought it a side effect of the lack of sleep. It wasn’t the lack of sleep.
There was a lot of anger. Anger at those who felt as though they knew what I was going through. Anger at those who felt as though they should tell me how best to deal with my feelings or more absurdly at those who felt they had the right to tell me how I should grieve. Anger at those who put their own timeline to my grief. I resented those who didn’t know how to help me yet was frustrated with those who felt like they knew how.
I grieved for the loss of my experience as a first time mother.
I tried to hold all these emotions down and put on a happy face for fear of being judged. I already felt as though I was being so closely examined and I didn’t want to welcome any more opinions.
Yet my anxiety increased with every minute of every day. I had a hard time focusing. My mind was constantly racing never resting. My body was almost buzzing with restlessness.
According to the Canadian Mental Health Association website (http://bit.ly/1hLBSbJ) some of the symptoms of Post-Traumatic Stress Disorder are as follows:
- Recurrent Nightmares or Flashbacks
- Feelings of extreme guilt
- Changes in sleeping patterns and alertness, insomnia
- Increased aggression
These are all symptoms I experienced. No one offered this as a potential answer for me. Not a doctor, not a NICU nurse, not a social worker. When you hear of Post-Traumatic Stress you often think of soldiers returning from war or victims of violent crimes. Your first thought is not of a new mother with a newborn baby.
There has recently been some talk about post-traumatic stress in parents of preemies. I would like to take that a step further and suggest that it’s not just parents of preemies who experience post-traumatic stress. If you have gone through any type of trauma in the birth of your child, perhaps a traumatic birth experience for either you or your baby you are at risk for Post Traumatic Stress. In my case, Mr. T. was born full term but with serious health issues that we were not aware of or prepared for during pregnancy. He had a lifesaving surgery and had a significant stay in a NICU. It all happened so fast. A tough birth, a diagnosis, an ambulance to a children’s hospital, a surgery. Then there was the bad news every day. It was one step forward two steps back every single day. He was waking up from his surgery, great BUT he pulled out his breathing tube, not good. His cardiac issue is improving BUT we found another issue with his spine. It never ended. We didn’t have time to fully understand one diagnosis before we were receiving another. It was so overwhelming is it a surprise that I was experiencing Post Traumatic Stress?
Now that we are 5 years out of it, I am able to recognize that what I suffered from was Post Traumatic Stress. What saved me was my ability to talk about it. My willingness to be an open book helped me work through some of my feelings. It wasn’t easy, especially considering the fact that many people were very uncomfortable talking about my experience and my feelings surrounding it. I am such an open book that I find it hard to understand why not everyone is willing to talk about how they feel, both good and bad. I don’t feel any shame in owning my pain. When I felt as though I could no longer turn to people to talk about how I was feeling I turned to writing. My pain disintegrated in my words.
My hope in sharing my experience is that maybe I can help another. Maybe someone else who is feeling totally lost and has no one to turn to might realize that they aren’t alone. Maybe all NICU’s everywhere will realize the emotional state of the parents is very important and needs to be dealt with.
If you have had a child with health issues and are experiencing some of these symptoms talk about it. Talk to family. Talk to friends. Talk to your Doctor. You are not alone. You have been through a battle, you are bound to come out bruised.