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A New Diagnosis All Parents of Special Needs Children Will Understand

My mom kept my daughter, Julia, last night so my husband, 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’re 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’re 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 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 an epilepsy diagnosis 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 percent 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 one 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 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’s not unreasonable. It does make sense. Yes, we’re a little crazy, but there’s a reason. A really good reason — our love for Julia.

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

This post originally appeared on I’m Julia’s Mom.