All along, you are asked to maintain an objective arm’s-length from the emotional pain and suffering of those around you. Do your best work, we are told, but don’t get too close. The problem is that I often dive in headfirst, and not only do I get close, I embrace and hold tight. Such was the case with sweet Charlotte Figi.
Charlotte Figi was more than an individual, she was an entire movement wrapped up into a sweet girl with a big smile and an even bigger heart.
Yes, I got close. It’s hard not to when her mother, Paige, described holding baby Charlotte and feeling her seize every few minutes, wondering if this would be the last movement she would ever sense from her daughter. Yes, I embraced, when I saw Charlotte healthy, and she took me by the hand, walking me around a holiday party in Colorado. Yes, I held tight. Paige reminded me that I once asked to turn off the camera during an interview because my tears flowed too freely and my heart ached at the injustice being heaped on this little girl.
Charlotte passed away Tuesday after battling pneumonia. The underlying illness once again unleashed her seizures, which CBD had kept at bay for years. The suspicion in the middle of this coronavirus pandemic was that she, too, had been infected, but that was never confirmed. She had worsening symptoms of fevers, cough and shortness of breath, tough for anyone to endure, but overwhelming for someone with Dravet syndrome’s intractable seizures.
Melissa’s text simply read: “Charlotte died. Please call me.” I had known that Charlotte had been ill but also believed she was on the mend, having been discharged from the hospital days before. I texted Paige, who sent me a heart and said “no more seizures. No more suffering.” Once again, the tears, which flowed freely, had to be dabbed away so that I could file my report for television. Once again, I worried that my personality would betray me. As soon as I was done with the television appearance, another text from Paige appeared. “She adored you. You were family. I gave her a good life.”
Paige, today we grieve with you. You lost your daughter, and as a parent of three daughters myself, I cannot imagine the pain of that loss. It is the one place I never let my mind go. I spent all night tossing and turning and wondering if there would ever be the right words to say or write. And I am still not sure. So, let me say thank you instead. Thank you for sharing your beautiful Charlotte with the world. She taught us so much and we are all better for it. We are more knowledgeable. We are more enlightened. Thank you for letting me into her life and into her heart. I got close to her and I will never regret it. I adored Charlotte deeply and will miss her even more. And yes, you gave her a wonderful life.