The Boy with the Golden Heart
Juvenile Batten disease is a rare and terminal condition that causes blindness and seizures and is mentally and physically incapacitating with an average life expectancy of late teens or early twenties.
If you never believed in fairy tales, this may change your mind. On June first, my daughter, Christiane, who suffers from Juvenile Batten disease graduated from Austin High School. Against all odds, she walked in her class processional and made her way across the stage to claim her diploma. It was a milestone we could have only dreamed of 13 years ago when we received her diagnosis. We never imagined that the happy day of her high school graduation would come and that our tears would be tears of overwhelming joy and gratitude.
When Christiane came home from school one day before graduation, she announced that she was going to the Senior Prom. She had already imagined her dress and reported that she only needed help narrowing down her choices for an escort. Christiane had always been self-determined and independently-minded, so I flashed back to her sixth-grade year on a similar afternoon when she came home from school and pulled a yellow sheet of paper from her backpack announcing that she would be trying out for cheerleader.
A thousand logistical questions raced through my mind as she confidently reeled off a Rolodex of possible escorts ranging from childhood schoolmates and family friends, to a very complete list of every accomplished and handsome boy on the Austin High football team. After careful deliberation, she landed on Beau Beathard, a handsome two-time Westlake State Champion football player, Eagle Scout, and a schoolmate she’s known since she was a child. “Wow,” I thought giggling to myself in amusement, “I better check it out with his mom.” After all, why shoot for the stars when you can land on the moon!? I decided to float the idea past his mother first, in an effort to avoid overwhelming Beau or putting him on the spot. The next day I received this text that read, “Hi, Mrs. Benson, it’s Beau Beathard. I would be honored to go to prom with Christiane! Just let me know when. So happy to do this and I can’t wait. Thank y’all!”
I will never forget her broad smile and the complete delight that illuminated her face when I told her that Beau would be taking her to the dance. Every morning after that, the first thing she asked when I woke her up, was, “Is today Prom”? Christiane spent the next month imagining the perfect dress and spent countless hours imagining her first date. She very specifically wanted a dress that didn’t touch the ground “so she wouldn’t trip while she was dancing.” Of course, she was imagining that, too!
When the day finally came, Beau came to pick up Christiane and I watched from behind as he guided her to the car. He so intuitively held her flowers so she had a free hand to use her cane, plus he seamlessly offered his arm to guide her as they made slow but eventual progress down the sidewalk to the car. There was absolutely not a single awkward moment or hesitation in initiation or leadership. With unflappable confidence, Beau spent the entire evening patiently and attentively attending to Christiane in every possible way with his fixed attention solely on her happiness. As I was a chaperone at the dance that night, I watched in tearful amazement at the incredible selflessness of The Boy with the Golden Heart. Knowing that Christiane loves to dance and sitting face to face in two chairs, Beau sweetly took Christiane’s hands and with absolutely no regard for how he may appear, he began dancing with her while she sat in her chair. After the first song, Christiane leaned over to me and while handing me her cane, she said “Hold this mom, I’m going to the dance floor!” Determinedly, she inched herself forward to the edge of her seat and while using the table for support, she pulled herself out of her chair with unprecedented enthusiasm. He held her hand over her head and in spite of her vision loss and coordinated efforts, Beau steadied her as she twirled around exactly as she imagined she would.
For the grand finale, Christiane was surprised when Beau escorted her to the stage to receive a crown and title of “Prom Royalty.”
The next day, I sent Beau a text to tell him that the evening had been the highlight of Christiane’s life, what a special person he was and that I believed God had used him in a special way inspiring many by his example. He texted back and said, “I’m just really happy Christiane got to have a fun night. Thank y’all so much for letting me go to prom with her. I’m always around if you ever need anything at all, so please do not hesitate to text me. I would be beyond proud if I inspired one boy to do the right thing!” I am sure he did. I know he inspired me and I am humbled to know an angel among us who could show us all what fairy tales are really made of.
I never saw Christiane’s smile leave her face that evening. Not once. I can confidently say it was the happiest occasion of her life and for an evening, she lived her own “happily ever after” in a beautiful story that only God could write. It was her very own fairytale that will forever be etched in her memory and The Boy with the Golden Heart will forever be etched in mine.
Written by Charlotte Benson, Christiane’s mother.