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What PTSD as a Special Needs Mom is Like for Me

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I am a special needs mom. My daughter is medically complex and has special needs. I debated whether or not I should share this, but I feel like very few speak out about this topic. I want to be the voice for special needs moms like me who may be going through the same thing – Special Needs Parenting PTSD.

WARNING: This post may cause triggers. Please take caution if you decide to read it.

What PTSD as a Special Needs Mom is Like for Me

Imagine You’re a Special Needs Mom…

I want you to imagine for minute that your infant, your two-month old baby girl just had a life-changing surgery. The surgery was to prevent her from severe refluxing and projectile vomiting, and to protect her and her airway from aspiration and damage.

Now, I want you to imagine that within 48 hours of that surgery your baby was still trying to reflux and vomit. Except you didn’t know what she was trying to to do because you were told she couldn’t vomit and the sounds she made sounded more like choking than dry heaving (retching) or refluxing.

Then imagine that for months on end she would make these choking sounds. These awful trying-to-throw-up, gurgling, can’t get air sounds 20+ times a day.

And you know how many times because you logged each and every one. Because the doctors didn’t believe you or they said they couldn’t help you because they didn’t know what else to do.

Then imagine that you went all over the state and even out of state to see different doctors and hospitals and to try to find answers because your heart felt like it was literally being ripped out each time she made a choking, vomiting sound.

And then because you tried so hard and because you continued to see doctors and hospitals to get answers, you finally found a way to make her better – not go away completely, but better.

And then the nightmares start. Vivid dreams of loved ones choking. Over and over and over. Dreams of your daughter choking and retching and not being able to help her. Awful dreams…

And when you’re in a room with another mom and a baby coughs you start to jump out of your skin. When you hear a child make a sound that sounds like what your child made, you panic. Inside, your heart is beating and you’re wondering why no one is doing anything. Then you realize the child isn’t choking, they are just coughing and everything is okay.

That is your life. And while things have gotten better, there’s still times where she has those episodes happen again.

Like yesterday when for 3 hours straight my worst nightmare came true and my daughter started trying to throw up. Except she still can’t. And it still sounds awful. That choking strangling sound that means she’s retching because of the surgery she had that’s still in place.

And I didn’t know why and there was no reason that I could think of for why this was happening. And the only thing I could do is hold her and cry with her through each episode. Because when it happens there’s absolutely nothing you can do to stop it. You have to let it play out.

And so for every 20-30 minutes during those 3 hours we sat there on the couch cuddling and holding hands, begging God to make it stop. And me racking my brain trying to remember every little thing she did and ate that day that could have set it off.

And then last night, while she’s been sleeping it off in bed for the past few hours, I’m still anxious, still on alert. Because I don’t want my precious baby to have to go through it by herself. Because I’m scared it might happen again.

That’s what being a special needs mom is like. Some days are good and some days are bad, but all days are hard.

Are YOU a special needs mom? Have you ever experienced PTSD?

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  1. I am a special needs mom and I do have PTSD, but it’s related to my health instead of my son’s. I have severe asthma and have had many asphyxic events where my throat closed up for no apparent reason. The first occurred when I was 6 and I stopped breathing completely. I was in a coma for 5 days. Thankfully, I don’t remember the asthma attack itself since I was so young, but I remember being depressed periodically after that. At 10, I had my next attack and have had many since-none as severe as the first one, but all very traumatizing. Hospital smells, ambulances, being out at night (since that’s when most of my attacks happened), among other things are my triggers, but I’ve learned how to deal with them now so I don’t have awful panic attacks every time. Strangely, when my medically complex son was born, I did not have problems with my PTSD, even while sitting in the hospital with him watching him try to breathe. I think I was so completely focused on him that my PTSD somehow took a backseat during that time.

  2. Kathryn Sneed, I can’t thank you enough for your honesty and transparency. You’re so right, this is not talked about at all. When you’re living it, you feel like you’re going crazy. My situation is much more different than yours, but you made me feel less alone. Thank you so much for that! !!!

    1. YES! I feel crazy a lot too, and it’s so hard to explain to people because of the stigma attached to it. I’m so glad that my article helped you and it’s nice to know I’m not alone!

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