Surviving the unimaginable with Chicago by our side

I was ecstatic when my husband, Miguel, took on the role of Alexander Hamilton in the hit musical “Hamilton.” Anxiety set in when I discovered this meant our family of four would be moving from New Jersey to Chicago.

That same week, our 7-month-old daughter, Adelaide, was diagnosed with epilepsy. At the time, I thought we would just give him some medicine, the seizures would stop, and we could move on with our lives.

I would soon learn that one-third of people diagnosed with epilepsy never get their seizures under control, and even if they do, the side effects of the medications can be just as debilitating. Looking back, it seems like the stars aligned so that we could be exactly where we needed to be to best care for our family, especially Adelaide.

“Hamilton” on October 19, 2016 Opened to rave reviews in Chicago – just two days earlier, we had celebrated Adelaide’s first birthday: a bittersweet occasion because our daughter was still having seizures and was months behind the traditional 12-month milestones. Miguel would later describe our time in Chicago, especially the early days, as holding a rocket in one hand and a parachute in the other.

Between Miguel’s performance schedule, living hundreds of miles away from our support system, and being thrust into the depths of the medical world, I’ve never felt so alone. It didn’t help that I suffered with both our daughter and the life I dreamed of for our daughter. Accepting our new reality will be an ever-evolving journey.

Isolation will be short-term. From the non-profit CURE Epilepsy, with whom we quickly began working and fundraising, to our friends with disabled children who fill our home for Adelaide’s future birthdays, to the teachers and neighborhood friends who help care for our son Jackson during Adelaide’s frequent hospitalizations – What we found: We quickly surrounded ourselves with care and friendship.

It was our Chicago community that allowed us to maintain a semblance of normalcy while straddling the line between “Hamilton” appeal and epilepsy appeal. And even after Adelaide’s death and our departure from Chicago, it continues to be a guiding hand that supports us on the balance beam of life.

Hamilton, Adelaide and Chicago are so intertwined in these four years of our lives that sometimes it is almost impossible to unravel them.

This impact culminated after Adelaide passed away on October 12, 2019.

The city of Chicago has emerged in ways we could never have imagined. When we arrived at the Harold Washington Public Library (all logistical details graciously managed by Broadway in Chicago), we were greeted by 400 people who collectively supported our family when we needed it most and the cast of “Hamilton” serenading us. Songs from Adelaide’s favorite children’s movies.

When Miguel returned to the theater ten days after Adelaide’s death, Chicago was there, too.

The audience cheered and told our family that they would always remember our daughter. I guess it’s no surprise that one of the questions we get most often is how Miguel managed to sing “It’s Quiet Uptown.” For those who haven’t seen the show yet, this gripping ballad occurs after the death of Hamilton’s son and addresses the loss of a child as “unimaginable.” Miguel answers this question by explaining that performing in “Hamilton” has been Adelaide’s escape throughout her life. A place where he breaks away from his own life and takes on someone else’s life for three hours. Even if the other life was complicated, it wasn’t his.

I always wished I could fast forward “It’s Quiet Uptown” and the previous death scene before Adelaide died. Or, I just hoped in vain that this time the end result would be different (come on A.Ham, are you really supplying the guns…again?!). Since Adelaide’s death, I have actually begun to accept the beauty of song and the transience of life.

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The song that moved me the most comes much earlier in the series: “Dear Theodosia,” in which Hamilton and Aaron Burr sing a lullaby to their newborn child. They have so much hope for their children’s future and their collective life as a family. They are unaware of the tragedy that awaits them.

This was my most challenging moment, and so when “Hamilton” producers called Miguel just a few days after Adelaide’s death to offer him the role on Broadway, I initially resisted the inevitable move. I didn’t want to go back to New Jersey, where our family was full of ignorant hope. I wanted to stay in Chicago with the incredible community we’ve built that supports us, knows Adelaide, and loves her for who she is. But with Hamilton closing in Chicago on January 5, 2020, we would need the revenue, and let’s face it, there was no way Miguel would refuse to play the role on Broadway.

Between CURE Epilepsy, the world-class medical care Adelaide received, especially at Rush University Medical Center, and the enduring love and support of Chicagoans, there could not have been a better city for our family to spend those years of our lives. So when planning the tour for my book, it felt natural to start in Chicago.

I started in Adelaide’s hometown.

There is no way our family can fully express our all-encompassing gratitude to this beautiful city. But add this love letter one more drop to the thank you basket that we will continue to fill for the rest of our lives.

Kelly Cervantes, author of:Normal Fracture: The Grief Companion When It’s Time to Heal But You’re Not Sure You Want ItIt will be published in November. He is an award-winning author, speaker, advocate and board member of the Chicago-based nonprofit organization CURE Epilepsy.

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