Adelaide, who died on Oct. 12, spent nearly her entire life battling seizures no one can still quite explain
It’s been one month since the death of little Adelaide Cervantes, and her parents are still deep in mourning.
“I’m a wreck,” a tearful Kelly Cervantes tells PEOPLE about her late daughter Adelaide, who passed away Oct. 12, just a few short days before her fourth birthday after spending nearly her entire life battling seizures no one can still quite explain.
“My experience with all of this has been markedly different because I have the show,” adds Miguel, 42, who returned to his leading titular role in the Chicago production of Hamilton, just ten days after his 3-year-old daughter’s passing.
“Call it a distraction or just the other part of my life that gives us a platform to speak about our daughter,” he says. “But yes, the show is a little piece of normalcy for me. When I decided to go back, I found some comfort. Sure, there are parts of the show that can be difficult, but it gives me some time to go be Hamilton and not be Miguel for a little while.”
“With every day that passes, it just seems like that was some other life or at least, some other version of our life,” continues Miguel, whose daughter Adelaide experienced her first seizure at just 7 months old.
Adelaide’s story had been documented through the years on her mother’s popular blog Inchstones and through the family’s work with the CURE, which raises funds for research into a cure for the devastating illness.
Says Miguel, “My wife (Kelly) was in the trenches every day and we would just all keep moving. But now, with each day that goes by, we realize that wasn’t normal. We realize now how difficult it was. It’s really hard to describe what we are going through at the moment. As much as we are relieved that the pain is gone for her, we are just so sad that she is not here.”
However, with each passing day, they find a little more strength. And much of that strength is coming from their 7-year-old son Jackson.
“He is our little beacon of light,” gushes Miguel. “Him and his goofy self. He gives us this perspective that we are going to be fine. We are going to figure all of this out. Plus, he has school and a life to get back to. It’s very clear that he has a very clear understanding of what all of this is.”
In fact, during a recent family outing, Miguel offered to let his son sit in the second row of their van, the place that Adelaide used to sit during family car trips.
“He told me, ‘No dad, let’s keep Adelaide’s seat there for a little longer,’” Miguel tearfully recalls. “I was like, ‘Yeah dude, OK.’”
In certain ways, life has gone on for the Cervantes family. Earlier this month, the entire family travelled to Disneyland to celebrate Epilepsy Awareness Day with other families touched by the dreaded neurological disorder.
It was to be Adelaide’s Make-a-Wish trip.
“We are always going to be a special needs family, that is never going to change,” says Miguel, who joined with family and friends to remember Adelaide at a Celebration of Life service on Oct. 20. “But our physical connection to a special needs child is no longer there.”
They also have found it somewhat comforting to look at pictures of little Adelaide at happier times. But then, in a cruel coincidence, they too discover pictures of Adelaide as she grew more sick.
“It’s weird to look back and see how bad of shape she was in,” Miguel admits. “But then there are the pictures where you could still see the sparkle in her eye, and that’s what hits us. Her suffering is gone and that girl with the sparkle in her eye? That’s the girl we can now feel. Our little girl is free of pain.”
So with all the strength they can muster, Kelly and Miguel wake up and smile as Jackson comes bursting into their bedroom every morning — and then they spend the rest of the day trying to envision their new life.
“People are always asking us how we can be so strong but the reality is that we have been mourning Adelaide for a very long time,” says Miguel. “We have been sad and angry for a very long time. We have been feeling all of those things for many years. The grieving process has been so prolonged.”
It’s not lost on them that the holidays are coming up and Jackson, like any boy his age, has much to look forward to.
“We are going to live a life, it’s just going to be a new version of that life, and Jackson is definitely going to lead the charge,” Miguel says.
And on January 5 of next year, Cervantes will play the role of Hamilton for the final time in Chicago.
“Hamilton and Chicago has been a part of our life, but that is going to be over soon,” says the native New Yorker. “This will most likely be the last Christmas we spend in Chicago. That is going to be a huge change.”
But some things won’t change at all.
“We have been so vocal about her situation and advocating for her,” Miguel says. “I mean, it helps us get up in the morning. We feel like this is what we should be doing. We are not finished. We are still fighting for her.”
“Just because she’s not here doesn’t mean we are going to stop fighting,” adds Kelly through an onslaught of tears. “There are so many families struggling. There are so many families dealing with epilepsy who will put their kids to bed tonight and won’t be sure they will wake up in the morning. We still fight because a cure needs to be found. That’s the promise we made to Adelaide.”
November is National Epilepsy Month. To make a donation in Adelaide’s name that will go to support Citizens United For Research in Epilepsy (CURE), visit this website. CURE is also holding the My Shot at Epilepsy Raffle where one can win a VIP Chicago Hamilton prize pack. For more information, head to this website.