It all happened so quickly. We got the call on Monday and by Friday we were driving away from a CPS office in Texas with a child we had never met before in the backseat of our rental car. The 24 hours prior had been a mad rush to make space in our home. And while there was plenty of space in our hearts, a little rearranging and negotiating was still in order.
“Is she having a seizure?” Miguel’s eyes were darting from the rear view mirror to the road in front of him.
I looked to the backseat. Her eyes were glazed over, she wasn’t responding to her name.
“Jackson, will you squeeze her hand?” I asked.
“She squeezed back!”
“Ok, so probably not a seizure, just, you know, life-shattering trauma.”
A while ago I read a post from a woman who had lost her husband. She referred to the time she had with her deceased husband as a chapter of her life. Which is a very healthy way to frame loss and grief. Logically I know this. Logically I also know that grief is grief AND no person’s loss can be compared to another’s AND that we all grieve and heal in different ways. But emotionally? Emotionally after reading this I felt an all-consuming rage.
“I’m so sorry that you are a part of this club but we are grateful you are here.”
David Axelrod said this to Miguel and I as we were wrapping up an emotional interview that would be shown during CURE Epilepsy’s annual Chicago benefit. It was 2017 and the first time I had heard someone refer to the epilepsy community as ‘the club’.
As I’ve been trying to face my own trauma, I am beginning to understand that, at times, my anxiety is simply its symptom. Not all the time, thank you genetics, but certainly some of the time. There are two times in particular that my anxiety flares that I can now correlate directly to my trauma. One of which has been alleviated with the help of my very own emotional guide... who just happens to be only nine years old... and my son.
One word kept coming up for me this week to the point that I probably shouldn’t ignore it. It is blasting through in my adoption parenting readings, it is top of discussion as we’ve been checking in a little more closely with Jackson and it has stood out to me in several social media posts that continue to nag at me like a child calling your name over and over again until you respond. Yes, I hear you! What do you want from me?!
I’m just not that special, I’m just not that special, I’m just not that special. Big sigh. Ok, I can do this (why is this one so hard to share?!). So, I’ve written a lot about the emotional and mental aspects of grief - these are what people think of when grief comes to mind: depression, anxiety, listlessness, guilt, etc. But there is a physical side to grief as well and for all my knowledge of my own mental health I had not anticipated grief’s effects on my physical health and certainly not on my physical appearance.
Our life is once again resembling the early days of the pandemic. Falling back into quarantine activities has me feeling restless, underwhelmed and frankly a little batty. I keep waiting for Kelly 4.0 to rise from the ashes like some sort of truth-telling, epilepsy-advocating phoenix. But those ashes, far from burning embers of flight, are looking cold, hard and grounded. Unfortunately, or fortunately, this is not a new feeling for me in the slightest…
This picture was taken in January 2016, the day before I went back to work after my maternity leave with Adelaide. I was already looking for a new job and was ready to make a name for myself in the NYC events/hospitality world. Today, I barely recognize this woman, her life or dreams.
Three Christmases without Adelaide. The first I spent a majority of the day in bed, last year I felt haunted by ghosts of Christmases past. This year though feels different as I’m learning to live with my grief and joy in tandem. And as I forever come to terms with Adelaide not pictured.
Years ago, when I first began speaking with researchers, I would catch the sparkle in their eye when they heard about Adelaide’s medical mysteries. Internally I wanted to scream at them, “how dare you find her suffering intriguing! How dare you draw ambition from our desperation!” But over time I’ve grown to appreciate the symbiotic relationship we as patients and caregivers have with researchers. We are their sparkle and they are our hope.
With epilepsy awareness month coming to a close and infantile spasms awareness week upon us I’ve been thinking a lot about my advocacy. Specifically about the nagging guilt I’ve felt for not posting as much about epilepsy awareness as I typically would this time of year. Am I failing this community by not Tik-Toking and Insta-reeling with the best of them? Then, as if he could sense my musings from 3,000 miles away, Bud aka Emma’s dad, sent me a piece of his writing that cleared the muddled lines like a doctor decoding an EEG.
