A day in the life of Adelaide Grace

On Monday, CURE Epilepsy will release a short documentary about a day in the life with Adelaide. It focuses mostly on an average morning in our home circa February 2018 – six months before I even started this blog: medication prep and delivery, a tour of Adelaide’s room, getting Jackson ready for school, a physical therapy session, downtime and yes, a seizure. For many reasons, it is not an easy watch: outside of an epilepsy monitoring unit, no one wants to see someone have a seizure. But it was also one of Adelaide’s last good months before her fatal decline. Of course, the Kelly and Miguel in the video don’t know that. They still have hope for their daughter’s health, no matter how strained that hope may be.

We have been sitting on this footage for nearly four years. Originally, the CURE Epilepsy team was going to come back and film the last half of our day. But Adelaide’s health devolved, her infantile spasms returned, her oxygen needs increased, and the reality of her prognosis began to set in. We thought we would take what we had and use it for a Seizing Life podcast episode – but it didn’t lend itself to an audio only format. I also had dreams of pitching it to a national news network, but by that time Adelaide’s care was requiring most of my time.

Following Adelaide’s death, and still with no clear purpose for the footage, it remained largely unedited. Then in early 2020 CURE Epilepsy’s incredible editor and producer, John Boston, sent me a rough cut which I wouldn’t be able to bring myself to watch for several months. Over the next two years, I would go back and forth with John and CURE’s Director of Marketing, Debby Hecht, every six months or so trying to figure out what, if anything, to do with it. This 30-minute time capsule of Adelaide’s life felt sacred – how could we ever do it justice?

Still, I knew it needed to be seen, that it was powerful and would leave a strong impact on all who watched it. So, when John and Debby proposed earlier this year that we release it during Infantile Spasms Awareness Week, I said yes. While Adelaide did not currently have infantile spasms when the video was recorded, its lasting effects on her cognition and development are undeniable.

What struck me the most rewatching the film this week was how normal that life was to those people in the video. The wild thing is that when we recorded it, I knew our life was different. That was the point of sharing it with people. But I had lost all gauge of just how different it was, how not normal it was, how freaking hard and fucked up it was. I mean, there we are going about our morning routines and Adelaide has a seizure. Everybody stops what they’re doing and assumes their well-known positions. Like a team working to disarm a bomb, except the bomb is my daughter’s brain and detonation is inevitable. Then, when it’s over, and Jackson’s out the door to school and Adelaide’s is stable, I’m making jokes about how I need more coffee. Because that is how you survive daily trauma: you make jokes, you play it down; you do whatever you need to do to survive and push forward.

I am about as ingrained in this epilepsy community as one can be without having a living child affected by the disease. And yet, even I can feel my sense of urgency slipping. I raise money and awareness and do what I can, but also accept that science takes a long time to advance. Part of that is just realistic and rational but also, come on! Why hasn’t there been more progress?! Why isn’t more research being funded? Why are we STILL accepting death at the hands of epilepsy?!?!

The emotions this video stirs in me are too many to name, but I’ve given each of them their space over the last 24 hours: from despondent over a cup of coffee to crying in our closet. As I’m writing this, I guess I’ve settled on a desperate and frustrated anger. Anger that more people don’t care, that more effort isn’t being made to help people treat epilepsy. But I’m not sure what else to do – how do you cure apathy? Well, hopefully, by forcing people to watch a short documentary about the real-life situations and decisions that families like ours are making daily around the world.

This Monday, CURE Epilepsy will release the documentary at 2pm EST on their YouTube channel and it will be available to watch forever after. I’ll post the link on my social media and website as well. Please watch and share, then share your stories alongside it: what is similar in your home? What is different? How can you relate? What was your biggest take away? I recognize our story can be frightening to some people, that we are an extreme and a worst-case scenario - but someone has to be.

Please excuse my allergy sniffles throughout. It would be a year after Adelaide died before I finally made an appointment for myself to see an allergist. Like many caregivers, my personal medical care fell low on my priority list. If watching a seizure is too difficult for you, I won’t judge you for fast forwarding. But please watch the rest, get to know Adelaide in a way you never have before, and remember her, honor her, and the 65 million people still fighting epilepsy worldwide.

Image description: Kelly wearing a grey t-shirt is kissing Adelaide's cheek as she holds her on Adelaide's bed in her bedroom. Adelaide's eyes are closed and her tongue is slightly sticking out of her mouth.