My Life Is Going To Be Short, So I Refuse To Live In A Bubble
Despite her terrifying condition, Lucy has no intention of spending her life hiding from everything. "From a very young age, my mom understood that I would get hurt very badly, but, to her, it was important for me to experience things as long as it was worth it. She understood that my life was going to be short, unfortunately." As awesome as Lucy's mom is, she's still a parent with all the fears and overprotective nature inherent to that job. And despite her advanced wisdom, Lucy is still a teenager. So, when her mom tells her she can't do something, she just does it anyway.
"My mom wouldn't let me ride a bike, but I really, really wanted to ride a bike so badly. Everyday she went to the grocery store, I would practice [riding] while she was gone ... she came home one day, and I told her, 'I know how to ride a bike now. I taught myself. You have to let me.'"
Lucy's Own Photo
A hero of our time.
Bandages, scarring, and exposed arm bones are one thing, but Lucy won't be caught dead looking like a dork at a pool party. "I wasn't supposed to go swimming in anything other than this god awful wetsuit," she says. "But, I was going to a swim party in sixth grade, and I didn't want to wear a wet suit, so I secretly went in a bikini. It was fine. My mom was like, 'Well, that was that.'"
Occasionally, Lucy and her mother have to come to a compromise. Unfortunately, that doesn't always work out. "Every girl wants to learn horseback riding, so my mom got me a miniature horse instead, but the horse was so mean. One time I was riding, and I fell and ripped off all the skin on my knees. My mom was horrified." Lucy has since learned how to ride, so her mom now lets her ride standard adult-size horses. However, no amount of lessons could have convinced Lucy's mom to allow her to cliff jump, so Lucy just went ahead and did that without telling her. "I went cliff jumping without my mom knowing. My friends posted it on my social media, and my mom was like, 'Oh my god.'" So, at the very least, that aspect of Lucy's teenage life is perfectly normal.
Eryck Quesada/iStock/Getty Images
Best of luck, Lucy. We're all behind you ... just not on that cliff. That looks scary as hell.
Lucy would love it if you'd consider donating to Debra Of America. Carolyn thinks Lucy is goddamn adorable and would love to hear your stories at firstname.lastname@example.org
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