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What's it Really Like to Live with PTSD?

Brain injuries do not show on the outside- I was thankful for this baby carrier, so I could actually do something, and I could know how she was doing every moment.

Brain injuries do not show on the outside- I was thankful for this baby carrier, so I could actually do something, and I could know how she was doing every moment.

I’ve thought back many times to the experience of Post Traumatic Stress Disorder (PTSD) in it’s strongest form for me. I feel like I cannot fully explain the depth and terrifying experience that it is. I want to try to explain how PTSD felt like for me.

Remember, this can be different for everyone, so just because you don’t think or do the same exact things I did, doesn’t mean you don’t have some form of PTSD. Also, I am not exactly sure how to separate what is normal with grief and losing a child, and what is something that comes from PTSD because mine were experiences that are meshed together.


PTSD feels like…

  • Putting my baby to bed, telling myself that God will take care of her, that if she’s meant to die in her sleep, she will and there’s nothing I can do about it. Telling myself that over and over, but yet popping up in an absolute panic 5 minutes later absolutely certain she is gone.

  • Having this ball of stress inside of my chest that was slowly eating away at me. I felt like I was being eaten alive from the inside out. The stress is insane.

  • Not being able to separate what is a real threat to my child’s life, and my body just reacting, and my brain thinking with absolute certainty they were gone.

  • Watching other people put their kids for naps, and not being able to relax because they wouldn’t check on them, and I couldn’t believe how relaxed they were.

  • Checking on Brilynn every 5 minutes of her life. She was under hawk eyes when she was a baby. I couldn’t leave her, if I needed to go to therapy, I needed to know that they would watch her as good as I was.

  • When people would hold Brilynn I would watch them, because they probably didn’t have their hand on her belly making sure she was still breathing, and what if she stopped breathing and they didn’t notice?

  • Driving home on 30 minute drive, and having to turn on the lights every 5 minutes to make sure all the kids were okay.

  • Not having room for love for my kids or my husband, because the stress was so strong inside of me, that feeling love was almost impossible.

  • So busy trying to make sure there is nothing dangerous around my kids or my husband, that I don’t have one ounce of energy to enjoy life.

  • Panicking over and over again, that my kids have died in their sleep. I had no doubt in my mind that they had.

  • Replaying the day I found Aria over and over again.

  • Battling my mind all the time in an exhausting and terrifying battle

  • Learning that your mental health is precarious and fragile and can be taken away in an instant.


Honestly, these are just some of the things. This is what happened over and over again for me. And if I hadn’t done EMDR and spent my year in therapy, I have no doubt I would still be in that high of a stress state.

I’m so so thankful and grateful that I can feel peace in my body now. After working through that trauma, I can feel gentleness and love. Do I still have my moments? Of course? Is my PTSD completely gone. Not at all. I still live with it every. Single. Day. Every day. It’s still there, and some moments are better than others. I will probably deal with it the rest of my life, but you know what I’m thankful for? I’m so thankful I took the steps to seeking help, and I did the painful and hard work I needed to do, to get me where I am today.

Many people think once you get PTSD you are forever in that state. It is a brain injury that’s real. But it is possible to rebuild those pathways, and make the symptoms of PTSD less, so that life is manageable, and you are able to function on a more stable level. I believe true PTSD doesn’t just go away on it’s own. If you don’t take steps to get help and re-wire the pathways in your brain to function normally, the pathways of trauma will keep getting deeper and stronger.

It’s not easy to share these things, but I do, because I want others who have PTSD to know that it IS possible to get help. It IS not a life sentence, that you are now living with forever. The trauma, the pain, the suffering are very real, but you can work at fighting back your brain health. So friend, if you are suffering, please please please go get help. I am happy to answer any questions to the best of my abilities, but for real, seeking a professionals help is so important when you are dealing with this kind of injury.


Featured
To Another Grieving Mother
To Another Grieving Mother

There is nothing anyone can say or do to take away the pain you are experiencing. I know the pain deeply of losing my daughter Aria, and I’m so incredibly sorry you know the pain of losing your child. This pain is unlike anything I have ever experienced before. I was told in the beginning, that I have to walk through grief. That I cannot shove it away or hide from it, and I have found that to be so true. I wanted to go to sleep and wake up on the other side of grief, yet- I couldn’t. I knew I had to walk through grief. This is something I would offer to you. Grief does not go away even when we pretend it’s not there. Grief will wait, patiently, until either you choose to face it, or it cannot be held in anymore.

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When your friend loses their child, it changes many things about them. They lose their innocence and joy of life. Child loss changes their perspective, their emotions, their outlook. It impacts their mental health. Friendships and other relationships can change drastically. The person they once were is gone, right along with their old life. Think of how you are changed and shaped by the events and things that happen in your life, and you will start to understand that your friend is deeply and profoundly changed from the loss of their child.

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3 Analogies of Grief That Have Helped Me

Analogies of grief help me see a bigger picture, and I’ve used a few along the way to help me make sense in my mind what I have been experiencing. Grief is so foreign and unknown in the beginning. I think the reason it’s gotten easier for me, is that I've become more comfortable with my grief. The feelings and emotions that come with it are more familiar. It doesn’t mean it’s so much less painful, but more that it’s become so much a part of me that it’s part of who I am.

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How many kids do you have? The dreaded question after you lose a child. There are so many ways to answer this question, and so many things that can pull at your heart. I would have never thought about it before Aria died. That this question of how many kids you have is such a terrible question to answer when you lose a child. I had no idea that such an innocent question can bring up such anguish.

On the Day Aria Died
On the Day Aria Died

I have not written about the day Aria died. Many people do not even know what happened to her, or how she died. I talk a lot about grief, PTSD, and dealing with the aftermath of death. Most of the time, I don’t share much about the day she died. It’s not because I don’t want to share. I think the details and the events surrounding her death and what happened are so traumatic for me, and they might be hard for others to read.

If only...
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How many times have the words “if only” echoed through your mind? Replaying events of your child’s death over and over again. Wondering all the if only’s you can. These questions and anxieties often translate into feelings of guilt, and like we didn’t do enough to save our child.

The Grief Comparison Game
The Grief Comparison Game

There is this little game of who has it worse that always seems to pop up in conversations. Someone says something that is difficult in their life, and another person is like, oh yeah? Wait until you hear how bad I have it. Or else they say, well that’s not so horrible, did you hear about so and so? They have it way worse than you.

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Have you been asked if you are doing okay yet? Or if you are over it yet? Or when are you going to get back to your normal self?

These questions are painful, and they magnify someone’s ignorance on what it means to lose a child. If you still have living children, are you allowed to talk about them? But if you have a child who is died, you aren’t? They are still very much there in your heart and on your mind, even if their life here on earth has ended. They are almost on your mind more. It’s not that you loved them any more than your other children, but the grief and pain over losing them is so great that is takes a huge hold over your life.

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With Mother’s Day coming up, there can be a lot of anxiety and dread to this day. I’ve been thinking about Mother’s Day and what it means to me. I’ve heard many mothers ask- am I still a Mother? Can I still be called a Mother, even if I don’t have a living child. Yes- you are a mother. When we become a mother, we are always a mother no matter what happens.

Megan Hillukka