Karen Valentine turned to advocacy alongside the unexpected role of medical caregiving when her son Levi was diagnosed with epilepsy. Then, last year, Levi, passed away from SUDEP when he was only 16 years old. During a recent conversation, she mentioned the irony of going from being a selfless caregiver to the necessary selfishness of grief and what a struggle that aspect had been for her. Woah. So, I asked her to write about it.
Life in the Cervantes house has been, well, emotional. Tween emotions and all their collateral damage have taken over. And just when I thought I’d gotten the hang of this parenting thing too. Ha, jk, I’ve never felt confident in my parenting two days in a row. Bring on the uncomfortable feelings and awkward conversations!
This week, pretend play gone wrong, surging hormones, and slamming doors had me questioning if Anessa was right and I am indeed, “doing it wrong”. It is a gift to be a mother – and to stay a mother – but that doesn’t make the challenge of being a mother any easier. Thank goodness for dear friends who can remind you (and your children) that you’re doing a great job.
Words and I have been tight for decades now. First, it was talking about my feelings (thanks Mom), and more recently I turned to writing. But these last couple of weeks I’ve been struggling to find the right words to explain my feelings, or more specifically, my emotional responses to events.
Before Adelaide died, I wrote about the garden she had planted for us, a garden full of people that would lift us up and take care of us after her passing. What I didn’t realize at the time was that as long as I continued to cultivate this garden, by maintaining relationships or doing work in her memory, her garden would continue to grow and thrive.
During high school, I developed a slight obsession with Gilda Radner following a National Forensics League tournament (not dead people, more like competitive speech and acting – obviously only the coolest kids did it). Last week I decided to go back and reread Gilda’s memoir, “It’s Always Something”. I hadn’t read it since high school when it took a stranglehold on me, and I was curious what effect it would have on me now.
I don’t do boring and avoid it at all costs. I’m not an adrenaline junky by any means but I do crave an exciting life. If I look at a calendar and see too many days that look the same, I get itchy. That is one of the reasons I think Miguel and I work so well together: he keeps life exciting by simply existing and I make sure we don’t forget our toothbrushes.
Next week, on Tuesday, March 26th, the epilepsy community comes together for Purple Day, one of several epilepsy awareness days throughout the year. While my commitment to this community certainly hasn’t waned, I recently had to acknowledge that my sense of urgency has. Perhaps this is to be expected. I’m no longer administering medications five times a day, fighting with insurance, or holding my daughter as she seizes.
It is hard to believe that it’s been four years since masks became a common accessory and the words pandemic and quarantine entered our daily vocabulary. Those mid-March days were a delineating event, etched in our memory not unlike where we were on 9/11. Even if our world now more closely resembles our maskless and activity-packed lives of before I hope the lessons of those uncertain days are not forgotten. So, this week I’m resharing a post I wrote on March 27, 2020, to remind us.
Today is International Women’s Day and please forgive me, but I’m feeling a touch jaded at the moment. Unfortunately, in the fight ahead of us, we don’t have the luxury of being jaded. So, this week I went looking for inspiration and fortification and realized I didn’t need to look very far.
Logically, I know that our bodies hold on to grief. I’ve read about it in various books, researched it for my own, as well as had personal experiences. However, my knowledge revolved around episodic symptoms. What I didn’t understand were the long-term effects.
Today is Anessa’s 5th birthday! There is not a day that goes by that I am not enterally grateful to call her my daughter. Her addition to our family has been nothing short of transformative. There are also days where I wonder how she has managed to transform every ounce of my patience into bone-tingling frustration.
