"I imagine this may be as tough to read as it was to write, but it’s time," begins Kelly Cervantes' open letter to her and her husband Miguel Cervantes' 4-year-old daughter Adelaide.
The letter posted late last month on her "Inchstones" blog - chronicling Adelaide's life with epilepsy and their family's journey after her diagnosis - reveals a heartbreaking update: Adelaide has been transitioned to hospice care.
"In May, after a brain MRI, we received confirmation that Adelaide’s brain was smaller than it was in December," Kelly Cervantes wrote, calling her daughter's condition "neuro-degenerative."
"The word that has haunted us from our earliest days on this journey, our worst nightmare, has come true," she continued. "There is no cure and no way to reverse it, her brain is deteriorating and we can’t stop it. When we received this news, Miguel and I were still determined to fight and do everything we could to provide her with the best quality of life available to her, but several events over the course of the summer changed our position."
Miguel Cervantes may be most widely known for his starring role in Chicago's production of the hit Broadway musical "Hamilton," but he and his family have emerged off the stage as some of the most vocal and passionate advocates for raising both awareness and funds for epilepsy research.
The couple has championed the cause since Adelaide was diagnosed with a severe form of the disorder, characterized by seizures, in 2016 at just 7 months old.
Kelly Cervantes has documented her family's journey with weekly blog posts for more than a year, even as Adelaide's health declined.
"We realized we had to listen to what her body was telling us and, last month, we shifted our goals from improving her health to keeping her as comfortable as possible," Kelly Cervantes wrote on Sept. 27, adding that there was no way for her family to know how long Adelaide might have left.
Speaking to their daughter, Kelly Cervantes wrote, "You have been stronger than me every step of the way."
"I’ve allowed myself to be comforted by denial asking you to wait until I’m ready. Though, I realize now, I’ll never be ready and even more so, that the timing is not up to me," she continued. "You’ve been fighting for your life for so long and I can see now that you are tired. It is my turn to be the strongest... and let you go."
"As we make this transition I will be trying to understand what you want and need to keep you as comfortable as possible," Kelly Cervantes wrote. "Please forgive the extra pictures and videos I’ll be taking, I know I’ll want to hold on to all the memories I can. It’s the things I can’t capture that I will miss the most: the way you smell, and not just after a bath, but your sweet, 'just you' smell. The feel of your forever baby soft skin and how tightly you squeeze my fingers even still. The way your hair feels when I run my fingers through it trying to comfort you and the weight of your body against mine in those rare moments when you let me snuggle you."
Miguel Cervantes shared his wife's blog post on Twitter, writing, "my wife and I have been happy to share our story of love & pain & struggle over the past few years as we have fought for & with our baby girl to try to make a difference."
"Sometimes even the hardest love & the strongest fight isn't enough," he added.
The couple has been active with the non-profit Citizens United for Research in Epilepsy (CURE) and the Epilepsy Foundation – who emphasize that one-third of all epilepsy patients in the U.S. don’t respond to current treatments, meaning more funding for research is desperately needed.
In an update posted Friday, Kelly Cervantes thanked readers for the outpouring of support for their family following the news of Adelaide's transition to hospice care. She detailed the change in treatment and services, including her family's use of "child life services" for their son Jackson, giving him "someone to talk to and play with who can help him make sense of the inevitable."
Kelly Cervantes also wrote that the child life specialist facilitated an "absolutely perfect mold" of Jackson and Adelaide holding hands that she will "treasure forever."
Miguel Cervantes changed his profile picture on Twitter to a photo of the mold, writing that his wife had "used some VERY STRONG language warning [him] not to break it," a directive he was following by not touching the mold at all.
"Apparently, beautiful things can come out of hospice!" Kelly Cervantes wrote of the mold, adding that the family is taking it "a day at a time" and stripping away medical procedures that had become their routine.
"I promise you, my angel baby, that your efforts, your fight, your life will not have been in vain," Kelly Cervantes wrote in closing her letter to her daughter last month. "We will take the eternal lessons you taught us and continue to plant your seeds in the hearts of anyone who will listen."