Thursday, November 21, 2013

I'm a Special Needs Parent and I have CTSD

My mom kept Julia last night so Wes and I could have a mid-week break.

Over dinner we talked about how we both feel like crazy people lately and I shared with him my theory that all special needs parents have my newly created diagnosis: CTSD (continued traumatic stress disorder).

How else do we make sense of this extremely volatile reaction we are both having to Julia starting a new medication. We've been complete basket cases this past month prepping for and starting these steroids.

Because we are traumatized.

Because this past month isn't just about one new med, it's the culmination of seven years of unresolved trauma. Seven years of stuffing grief and swallowing fear in order to keep functioning one day at a time for the girl we love.

No resolution - just the next thing.  If the next thing is bad, the trauma piles on. If the next thing is good, the trauma goes unexplored because who goes and pokes at trauma when you finally get a breather? You don't, you leave it alone. Let sleeping dogs lie - or something like that.

This one new medication is the next step in a journey of eleven different medications we've tried so far since receiving a diagnosis of epilepsy for Julia. Eleven roller coaster rides of watching her seize, being given our options, weighing the pros and cons of our options, deciding to go for one of these options, fearing the worst reaction, hoping for the best, anxiously watching her, meticulously reporting every little change to doctors, in some cases celebrating victories, but ultimately in every case being defeated by the return of a seizure. And starting again.

How can we not be traumatized?

When the present becomes hard I've noticed I start having flashbacks to the the early days.  In the last week I've been maybe 50% present because my brain is obsessed right now with going back to the beginning to relive those first traumatic moments.

The phone call from the doctor 1 hour after the 20 week ultrasound.

While we were calling friends and family to say "It's a girl!" our doctor was calling us to say "It's her brain."

The floor disappeared under my feet and the room started to spin. I couldn't catch my breath.

Not the brain, not the brain, not the brain.

You can fix a heart right, or lungs - you can fix lungs? Let it be lungs or heart or arms or legs.  Not the brain. How do you fix the brain?

The call back to my mom: "something is wrong with her brain."

And the helpless, what the hell is happening, clinging to each other for dear life embrace with Wes in our tiny living room which continued to spin out of control around us while we held each other and knew that the entire story we had made up for our lives was swirling and lifting up into the sky, never to be seen again.

How can we not be traumatized?

This diagnosis I've given to Wes and me and the entire special needs parent population may not mean much in terms of day to day life - we still keep the motions going. But for me it helps. It helps to pause for a moment and remember why the ache and the frenzy exist. Why the walls are up and fists are drawn.

It is not unreasonable. It does make sense. Yes, we are a little crazy but there is a reason. A really good reason - our love for Julia.

Swallow. Deep breath. Shoulders back. Now keep going.


  1. A friend sent me a link to your PTSD blog post today. I know that you wrote this awhile ago, but I totally agree. Our stories are too similar to go in to, but I just wanted to thank you for being so honest. You are right, I call it PTSD, Post Traumatic Seizure Disorder. I hope that we all have an easier time in the upcoming years.

    1. Thanks so much for reading and leaving a comment. It's nice to be reminded that we aren't alone on this roller coaster.

    2. I typed "overwhelmed special mom" and there you are! thank you for sharing. I do agree about your CTSD term, i guess, drinking my everyday cup of coffee it helps me to have the energy to deal with it. Of course, the love of my two beautiful children is what keep me strong. The uncertainty about the future is very painful. Although i keep telling myself to take day by day and "Swallow. Deep breath. Shoulders back. Now keep going." Thank you again and my best wishes to you and your family.

  2. Laurie, thank you for sharing your journey. You show us love, hope, fear, and love and strength again and again. You are a true mentor to many. A guiding light in a world where we all need to remember to take deep breaths and keep going. Love to you and your beautiful family. Xoxo

  3. The doctors told us in a meeting room with like six doctors. They said something was wrong with her brain then took the worlds longest pause. We both were convinced she was brain dead. That our baby was already gone before she arrived. Then they said she had ACC, a condition that causes symptoms similar to Aspergers. They didn't understand our relief. We already knew our baby could have autistic symptoms (I have All of the criteria down to the childhood ones to be diagnosed with Aspergers) and could be diagnosed autistic due to it running in my family. So they went from making us think we had lost our baby to telling something we already expected. Later we found out she had dandy Walker syndrome as well and we didn't react a lot differently. She was still our baby. And she still was doing well. We focused on the positive. It confused our doctors. They thought we were in denial. We weren't. We knew it would be hard. We didn't know doctors would continue to make it harder and that our daughter actually isn't hard at all to take care of or to love or that her being different isnt even something we think about when we are alone with her. She is who she is and who she has always been. It's everyone else, often doctors but not always (we have had some good ones and food physical therapists) that makes things harder. Not her.

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