“My 38th turn around the sun was a year of grieving and healing, transplanting and adjusting. The once frenetic pace with which I had lived my entire life—seriously, there was a time where if my calendar wasn’t filled from dawn to dusk I felt wasteful—crawled to a sluggish stop.
On October 12th, 2019, just five days shy of her fourth birthday, my daughter, Adelaide, passed away from a neurodegenerative condition. Yeah, it was just as traumatizing as it sounds. Diagnosed at just nine months old with infantile spasms, a particularly devastating form of pediatric epilepsy, she would go on to have countless seizures, become a frequent flyer at the hospital, and eventually, develop significant breathing difficulties along with numerous other challenges.
In total, Adelaide was seen at thirteen hospitals in seven states. I would have booked passage on a boat to the far ends of the Earth if I thought answers could be found there. But as her symptom list grew, so did the list of failed treatments, diets, and therapies. My life revolved around her care, even giving up my career as the Director of Sales for a prominent restaurant group in New York City so I could stay home with her. She became my North Star, setting the course for every decision I made in every aspect of my family’s life. And then she was gone.
While Adelaide was alive and between her frequent appointments and hospitalizations, I joined the board of CURE Epilepsy, started a blog, hosted a podcast, and accepted every event and media opportunity to share Adelaide’s story. Thanks to my husband, Miguel Cervantes, owning the role of Alexander Hamilton in the Chicago production of the hit musical, those opportunities reached far and wide. In the month following her death, I was in shock and maintained my many activities, afraid of what I might find in the stillness.
Inevitably, the stillness caught up to me though, and with the power of an out-of-control freight train, it derailed me for months. Our once-bustling house, filled with the beeps of her machines, comings and goings of nurses and therapists, and ever-present whooshing and wheezing of her oxygen concentrator, had fallen eerily silent. The only sounds that penetrated the quiet were from life occurring outside our apartment: our neighbor’s dog barking, someone taking a shower—sounds I had never noticed before.
And then the pandemic hit.
In April 2020, on my 38th birthday, my dearest friends in Chicago ordered a rather large and slightly garish smiley face balloon display, which was assembled on the fence outside our condo window. We social distanced outside and drank plastic cups of—from there I continued to drink whatever was in arm’s reach for the rest of the day, hoping to blur out my grief in a continuous drunken haze. It worked: I had a great day, from what I remember. The day after my birthday marked six months since we lost Adelaide, and that marker weighed heavier than the case of wine I had attempted to drink my way through—or the hangover that accompanied said case. Basically, what I’m saying is 38 was filled with rainbows, sunshine, and cupcake-pooping unicorns.
Around this time, I was fairly certain being forced to grieve during a pandemic, where I was shut off from the world, friends, family, and distractions, was the next cruel phase of my trauma. But in hindsight, I’m able to see the time it afforded me as some sort of bizarre white elephant gift. There is a difference between feeling grief (drinking your way through your birthday) and processing grief. The former feels out of control, like it is something being done to you. But when you’re processing the grief—taking it apart, analyzing the why, the when, the how instead of pushing it down or manically exploding—it becomes something you can own. Most likely, the grief can never be controlled, but at least it can be understood.
I NEVER would have afforded myself the time to reflect and process Adelaide’s loss if I hadn’t been forced by the pandemic. I would have masked my grief with make-up and pretty clothes and attended all the events while popping dangerous amounts of Xanax to get me through. This was how I had always rolled in the past—go, go, go until you get sick or crash or both. But with Covid, there was nowhere to go, no mask to hide under, no excuse to avoid my grief.
Dare I admit this out loud…I’ve actually felt optimistic as of late. Sure, the vaccine helps, as does the warm weather and signs of life returning to some sort of new normal. But I also feel an internal shift—as if a new version of myself is gearing up for this next phase of my life. To get to this point has been no small feat, and if I’m ever going to take my own advice and celebrate the inchstones on the way to life’s greater milestones, this feels like as good a time as any to recognize my personal progress. I’m pushing forward and working toward greater goals, which is significantly more than I can say about where I was a year ago.
I can honestly report I am in a much healthier place. My husband and I have made a pact to only drink socially, and, since we’re still pretty careful about who we see, that is (unfortunately) rare. Leaving the house for any reason used to require multiple benzos and a long nap afterward. I couldn’t emotionally handle social outings two days in a row, let alone two in one day, without my anxiety catapulting to a critical level. I still require the occasional nap, and grocery stores remain a major trigger for me (grief is weird), but my benzo use is way down and being social no longer requires bed rest.
I can see the progress I’ve made, and I’m proud of myself. This doesn’t mean I’m better: there will always be dark holes I crawl (or trip) into down the road. I’ll never live without this grief, but I can try to not let it be solely responsible for dictating my life. I still surround myself with her pictures and watch old videos stored on my phone. I go back and read my old blog posts and share memories with any available ear. I haven’t let go of her at all; she is just as much a part of my thoughts and my day as she was the day after she died. I do still cry for her most days, but it’s not the debilitating grief it once was. As everyone said I would, I am learning to live with her loss (curse them all for being right!).
So, bring it on 39—I am battle-tested and can likely manage just about anything thrown at me—but if perhaps we could pepper in a bit more good this year, it would be greatly appreciated. I’m not asking for the cupcake-pooping unicorn, but some more sunshine and uncontrolled laughter would be a welcome reprieve.”
This story was submitted to Love What Matters by Kelly Cervantes. You can follow their journey on Instagram, Facebook, Twitter, and their website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more stories from Kelly here:
‘My psychiatrist called to ask about Mother’s Day. ‘Can we just skip it this year?’ My mom’s response was an emphatic, ‘No!’: Mom who lost daughter to epilepsy says ‘happy Mother’s Day to all, we’re with you’
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