‘I saw my kids dead, over and over. It was my constant fear.’: Mom suffers severe PTSD after losing daughter to Sudden Unexplained Death in Childhood

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“Many people think PTSD (Post Traumatic Stress Disorder) only happens to soldiers. It doesn’t. It happens here in everyday life. It can happen to you, when you are going along with your life, and suddenly you experience something traumatic and your whole world is turned upside down in an instant.

This happened to me when I found my daughter Aria after she had died in the night in her sleep.

Courtesy of Megan Hillukka

I didn’t realize I had PTSD at first. I just thought I was going crazy. I felt like I was losing my mind. I was so stressed, and the panic that just kept coming was so consuming that I couldn’t separate myself enough to know that I had a traumatic brain injury. I was in therapy and my counselor mentioned I possibly have PTSD. I looked up the symptoms of PTSD and I could not believe it. There was a list of symptoms of things I was experiencing every single day.

-Panic attacks

-Nightmares/flashbacks

-jumpy/easily startled

-avoidance

-fight-or-flight response

-constant alert mode

-constantly stressed and in terror

-inability to put the trauma as a past event

-anger/angry outbursts

-difficulty or inability to love

I think of PTSD as an invisible brain injury. It’s something that cannot be seen on the outside, but the trauma that I experienced with finding Aria dead in her crib snapped all the connections in my brain that would bridge my left side of my brain to my right side of my brain. You cannot see it from the outside, but inside, my body, mind, and brain were going haywire.

Courtesy of Megan Hillukka

There are two ways I like to describe what happens with PTSD the way I understand it. One is as a computer file. A computer files documents away into folders and pulls them up when you want them to come up. That’s how our brain stores memories. It takes the memory and files them away in our brains, and then we can pull them up when we want to. With PTSD, you cannot file that memory of the trauma away in a folder in your mind. It’s always there in the front of your brain, ever present, ever happening. The trauma is being re-experienced and re-lived every single day.

The other way I think about it is that our brain has a right and left hemisphere. There are connections and pathways in the brain that connect those two sides together. When you experience PTSD, those connections are broken, and your logical side of your brain cannot connect with your creative/emotional side of your brain. So your emotional side of your brain is stuck in the fight-or-flight mode. It cannot reach the logical side of your brain that can tell you that the danger has passed and you can relax. Those pathways need to be rebuilt in your brain in order for your brain to stop reliving the nightmares, and pumping adrenaline through your body because you are in danger.

I lived in terror the first year after Aria died. We would be driving home in the dark from somewhere, and I had to turn on the light every 5 minutes to check on all my kids, because I knew for certain one of them had stopped breathing. I went on a road trip where I had to sit in the back next to my baby with my hand on her belly the whole way so I could make sure she was still breathing. I watched my friends and family put their children down for naps, and anxiously awaited for their kids to wake up because they never checked on them. I have so many stories of this. It was my constant fear, my constant reality, and the truth in my life. I saw my kids dead, over and over. I saw them not breathing over and over.

Courtesy of Megan Hillukka

This level of stress made it very difficult to feel love or peace. Anger and frustration came out in such a deep way. It makes it difficult to find any calm. I said often that I have a huge ball of stress in my chest, and it’s slowly killing me from the inside out. It is not a way to live. It is horrible, painful, and terrifying. I found help and hope when I began doing EMDR (eye movement desensitization and reprocessing) and the results were amazing. This helped rebuild the pathways in my brain, and file that trauma as a past event. It doesn’t take away the memory or the trauma completely, but it lessens the symptoms where I’m now able to feel love and joy, peace and calm. I can check on my kids while they are sleeping and not get a bodily response. I still have to fight my brain and wonder if I will find another child dead, but it’s not anywhere close to the same experience as it was in the past.

There is hope and help. It is possible to heal and get better from PTSD. I am a real-life example of that. It is possible to recreate those pathways in your brain so you can function and have a normal life again. Our mental health is so precious, and it can be taken away in an instant. It can also be rebuilt and healed. This takes a lot of hard work, and facing our pain head on. Please, as a someone who knows deeply how difficult it is to live with PTSD, go seek and get the help you need. You are not crazy, and you are not alone.”

Courtesy of Megan Hillukka

This story was submitted to Love What Matters by Megan Hillukka. You can follow her journey on Instagram and her blogDo you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

Read Megan’s powerful backstory of losing her daughter:

‘I peeked in her bedroom. As I walked closer, I looked at her white feet and knew something was wrong. My brain snapped.’ Mother tragically loses daughter to Sudden Unexplained Death in Childhood

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