So, I just finished writing about Adelaide’s life for my new book. I had written the beginning of my book, and the end, but this messy middle was unquestionably the hardest. Which makes sense, it is the most traumatic.

Except that after Adelaide died all I could write about was her, I wrote 63,000 words about her life as a weapon against Time and its memory thieves. I NEEDED to write about who she was, but also the seizures, and the resuscitations, and the ambulance rides, and the endless appointments, and the fights with insurance, and the way it affected our family. I NEEDED to put it on paper to memorialize, but also as therapy, to prove it was real and to work through the emotions surrounding it. And I did. And I thought that was enough.

I know we are never healed, and that we will always grieve our lost loves. I’ve written those words here, in my book Normal Broken, and say them in nearly every speech I give. I could accept grieving Adelaide forever because I will love her forever. Grief = Love. What I didn’t understand is that the trauma of her life would be with me forever as well.

Perhaps starting to read a memoir about Complex-PTSD was not the best book choice while writing about my own trauma. Or maybe it was exactly the push I needed to face this next step. What My Bones Know, by Stephanie Foo is about her abuse as a child at the hands of her parents, how the compounded trauma impacted her as an adult and the healing journey she embarks on.

I was not abused as a child. In fact, my childhood could not have been more picturesque. My brain developed as it should, and I have a dependable support system.

And yet so many of her symptoms felt uncomfortably familiar.

During Adelaide’s life I was aware of our high-stress normal. How could I not be. But I didn’t feel like there was anything I could about it. It was a constant onslaught, and the goal was to keep Adelaide alive and keep our family surviving along with her. It wasn’t even an issue of not having time, it was more than you can’t address your fight or flight responses when you are in a constant state of fight or flight.

While there are several highly traumatic episodes that rise to the top when I think of Adelaide’s life, it is the hyper-attentive state that was our normal that I’m now assessing. Monday night, unable to sleep I dove back into the google dumpster looking for information on C-PTSD that occurs as an adult, not a child.

There has been significant research done on veterans, civilian war survivors, and even domestic abuse victims. Medical parent caregivers? Not so much. The few studies I did find, acknowledged an increase in PTSD in this population. But the percentage of those affected ranged from 4% to 80% - a ridiculous range. Obviously, there are factors involved: gender, base-line mental health, socio-economics, medical severity etc. I would also argue that during Adelaide’s life I’m not sure that I would have displayed PTSD symptoms because it was all ongoing (though maybe my mom would disagree). It’s only been since Adelaide died - since my cortisol and adrenaline levels have had a chance to normalize - that my depression and anxiety reached debilitating levels.    

What’s your point, Kelly?

Look, there was a time when I would have found these studies laughable. OF COURSE caregivers experience PTSD and possibly C-PTSD. Do we really need a study to prove this? BUT without the studies, no one is going to pay attention.

We should be addressing the impact of medical caregiving on parental health when the diagnosis is delivered and then continue to check-in throughout the child’s life AND beyond. Whether it’s epilepsy, cancers, ASD, WHATEVER, a family social worker should be a part of the mix! The trauma is inevitable, acknowledging the ways it’s affecting us should be as well.

I have been so focused on healing from the loss of Adelaide, I pushed aside the necessary work to heal from her life. I have tried to idealize her life, to focus on the beauty, because that is how I want to remember her. But I have to hold space for the trauma as well, and not just tucked high on a shelf in the back of my mind. I’m not entirely sure what this will look like yet: EMDR? Restorative yoga? Hypnosis? Whatever it is, you know I’ll bring you along for the ride.

Photo ID: Adelaide resting in a hospital bed, surrounded by medical equipment, wearing a hospital gown and a nasal cannula. Kelly is leaning over to kiss her forehead.