There will always be stresses in life: plans that go awry, disappointing outcomes, and the occasional asteroid. This summer, I want to try and enjoy life more, even amidst the inevitable chaos. Or, perhaps, despite it. I know that one day I will miss attending little league games, that I will look longingly at the cherub-faced child in the preschool graduation photos. I want to enjoy it all more NOW.
During a text check-in with a fellow Dead Kids Club member this past weekend, our conversation turned to how no one tells you just how challenging life can get. She noted that sadly, she learned that as a child, but she had a similar conversation with another DKC member whose life was uneventful until the passing of her son. It had been incredibly jarring for her to find out as a 40+-year-old that life does not always go as planned.
If you are fortunate to live long enough, inevitably you will experience moments that forever change the trajectory of your life. These are the dates we recall effortlessly, markers in time, that separate life into before and after. My most significant date is May 26th, 2016. Not even Adelaide’s death, Jackson’s birth, or Anessa’s arrival can compare to the change leveled on our family that day.
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.
