CHD & PTSD


I woke up this morning and saw a tragic story in the CHD community. A very sad story of a murder-suicide happened with a CHD family which inspired me to write about my own story with PTSD and my experiences with therapy, just in case it can help anyone.

Today, August 8, 2016, it was confirmed that the Short family from Berks County, Pennsylvania was found dead on Saturday 8/6/16 with a murder-suicide note.


Please read the articles and watch the News reports.

Below is the link that the news reporter mentions the CHD mothers struggle with

PTSD because of her CHD child's repeated surgeries.

http://www.nbcphiladelphia.com/news/local/Dead-Murder-Suicide-Berks-County-389398512.html

Here's a little about my experience with PTSD: PLEASE UNDERSTAND HOW REAL PTSD IS.

What is it?

What does it do to the brain?

What happens when you have a PTSD attack?

How does it affect your loved ones?

As someone who has been diagnosed with severe Complex PTSD as of two years ago, I live with this every single day and so do my loved ones because of how it affects them and our relationships.

If you don't get help it will destroy your relationships and can destroy your life.

You CAN HEAL FROM PTSD and I will be living proof soon enough!

I am determined to get this out of me!

With hard work that I have been doing and continuous therapy (there are many different PTSD therapies you can do: Accelerated Resolution Therapy, EMDR, Hypnosis, CBT and/or DBT), I am on my way to freedom!

Below is a helpful "easy read" article explaining what PTSD is

http://www.nimh.nih.gov/health/publications/post-traumatic-stress-disorder-easy-to-read/index.shtml

PTSD, financial issues, marriages falling apart and getting worse, and one or both of you going crazy is all VERY real when you have to deal with your child having a terminal and/or chronic illness.

When you have to watch your child suffer and cannot do anything about it. When you have to surrender to people who are taking risks on your baby with experimental surgeries. .. The list is endless with what our CHD parents have to go through.

Yes, we as survivors live it and that's a life in itself that requires a lot of support and help as we get older. However in the beginning we are sedated during surgeries, have innocent minds like a child and just want to play. Yes we develop slower and differently and see the world in a different way. We are very unique special children. However we do not have the emotional or mental traumas happening to us until later in life, or for some - never.

This is why I say watching someone suffer is worse than being the person suffering sometimes because at least we are drugged up and sedated. You, as our parents, who love us more than anything or anyone on this planet - have to watch this innocent precious little child be what looks like abused by doctors. But it's not abuse and maybe we are scared and screaming, but we aren't scared in the ADULT way that you are. It's on a much smaller scale.

I say this all with deep empathy and love.

We, as children (0-5-ish) do not have adult emotional and mental fears, anxiety and suffering like you do. You are an adult aka your brain is fully developed, you have had a lifetime of hurts and struggles already and are having to deal with a marriage and other children on top of it.

PLEASE UNDERSTAND that we are NOT in as much pain as YOU think

we are as little children.

You are WAY more hurt than we are I can 100% PROMISE You that!

My therapist told me once being abused is extremely traumatic yes, however WATCHING someone be abused is sometimes more or as equally as traumatic because you can't do anything about it. At least we can deal with our own trauma and abuse. That made a lot of sense to me and now I'm taking that and putting that here it fits. I truly do believe our parents and spouses and siblings suffer far more than we do as patients while we are small CHILDREN.

Yet when we are ADULTS? ... In my opinion, It turns around and becomes the OPPOSITE.

Now we have adult brains, emotions, and hormones that make us crazy just like any human. Add a potential terminal and severe chronic illness on top of having the knowledge, the emotions and the mentality of an adult and that's a recipe for PTSD, depression, anxiety, suicidal ideation and the list goes on.

This is where we need to get the right help for ourselves and we need you to support that and help us find help - therapist, online or in person support groups, talking to people like myself, writing to older CHDers and asking questions, attending CHD parties and events even if you don't want to because it will make you feel not so alone even if it's painful to watch 50 reflections of yourself walking around, the benefits far outweigh the costs.

When I was 9 I was put in therapy for being sexually abused but what I discovered was how happy it made me to be in therapy to just sit there and talk to someone who weren't my parents or family, aka someone who wasn't going to get emotional at every freaking thing I said.

It was great. I have only stopped therapy once in my life and that was in college for a short period of time. I have had WAY too much to deal with to stop for too long, and these people have become my support system since I was 9 years old. - I LOVE having a NON EMOTIONAL, DISCONNECTED person to talk to about my life. They are objective, tell me whats up and therefore help me grow without hurting me in the process. Yay for therapy!!! lol. :D

THERAPY!? ... AHHHHHHHHH!!!! ...

Lol, is that your reaction when you hear that word? Hold tight .. I am a professional patient at this point so let me explain a few things.

I know a lot of people have their own ideas about therapy but honestly it's literally just a person you talk to about everything and it's freaking awesome.

Trust me, we understand the destruction of what disabled children can do to a family. We wish we could change it and so do you. We see and hear your pain from a very young age and we know it's because of us. We know we are complicated children to have and that's why we are so sensitive to everything yet build a strong exterior to protect ourselves. There are ignorant people who damage us with their own pain. Then as we grow, we build ourselves to be strong and we want to protect you too.

You and Me - Parent and CHD child - is a definitely different parent / child dynamic that there is no perfect rules for.

As we grow, it gets complicated sometimes between us because we see your pain and you see ours and sometimes both of us just don't know what to do with it because we are thinking the same thing. Why did this have to happen to you / me? But holding on to that question will keep both of us trapped. We just have to live and experience life together and grow as parent and child the best way we know how in our individual relationship.

There is no "normal" family dynamic that is expected to flawlessly get through a life that we were prepared for or built to comprehend or deal with.

There is no perfect guide on how to have a physically and/ or mentally disabled/ different / sick child, but I am trying to help as much as I can as one person.

It is EXTREMELY important to even temporarily have a therapist and/or medication while going through extremely traumatic times.

You are not a failure for reaching out for help. You are building yourself and your relationships and therefore extending the lives of all involved and learning the skills to make those difficult times a little easier and happier.

These days there are many resources (and more to come) for help with CHD families.

I wish our parents had everything the CHD Parents today had. Somehow I think sometimes the beauty was in having to figure it out on their own and NOT having anyone to talk to or color their own decisions; NOT knowing any other CHD parent or NOT having any older CHDers to look up to, because they had nothing to compare their lives to and simply did the best they could without the anxiety and pressure to measure up to some other CHD child's family. This is unfortunately what I hear a lot about amongst CHD parents these days. I have heard many CHD parents say this in conferences and directly to me and because of this this is making your anxiety, depression, and traumas worse.

C'mon guys, we are humans here to love and help each other.

Not kick each other while we are down.

Lets please stick together - survivors, parents, families and the amazing doctors and nurses saving our lives and helping us along the way.

Smile on a face or not people, KEEP HELPING EACH OTHER.

You never know the battles that are being fought behind a smile.

Please don't hesitate to send a positive comment or ask someone you wouldn't normally ask if they want to be friends because we're all going through the same struggles and there is NO REASON TO DO THIS ALONE.

For the past 9 years, that has been my MAIN GOAL -- you can hear me say it on my YouTube videos 100 times and at the bottom of every single one on my blogs I say "Your existence gives me hope" Because all of you, are why I am still alive today. I made it through the hardest times of my life because of simply meeting and becoming friends with CHDers whom I never thought even existed. Then the support from them and their families gave me a new lease on life.

We are social creatures - We are not meant to fight alone.

We are meant to help each other.

PLEASE KNOW YOU ARE NOT ALONE IN THIS AND THERE IS HELP RIGHT IN FRONT OF YOU IF YOU JUST REACH OUT AND GRAB IT.

We will continue to rise together. Thank you CHD Parents for being Soldiers.

Thank you for fighting this fight blindly and never giving up on us.

Feel free to check out the Parent video I made 3 years ago:


"Never doubt that a small group of thoughtful, committed citizens can

change the world.

Indeed, it's the only thing that ever has." - Margaret Mead

Thank you for your support.

Thank you for existing.

Your existence gives me hope.


EDUCATE. INSPIRE. HEAL.

Copyright @ 2017 | By Stephanie Romer

#PTSD #CHD #trauma #mentalhealth

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