The Sports Network's, “The Butterfly Child,” video caught my attention and heart for the past 12 minutes and 43 seconds. If you look at me, in this moment of reflection, sadness and peace, you’ll see my flushed cheeks glowing from the tears that have been making their way down my stunned face.
“The Butterfly Child” is a short documentary that captures the life of 14-year-old Jonathan Pitre, a devoted hockey fan who suffers from Epidermolysis Bullosa (EB), an extremely rare and painful genetic medical condition. EB creates fragile skin that can be easily injured, causing extremely painful blisters both on and under the skin. Those suffering from EB are known as Butterfly Children because their skin is as delicate as the wings of a butterfly.
I had never hear of Jonothan or his illness until this assignment. My friend Lindsey, both my sorority sister and fellow J202-er in another section, thought it would be entertaining to watch me experience “The Butterfly Child.” Lindsey knows I am a sucker for non-fictional, child-focused, sad stories. When she saw “The Butterfly Child” on the bottom of the spreadsheet, she knew I was going to be hooked and devote my blog post to Jonothan’s story. Once I got her text with the video’s link, I ran to Lindsey’s room, sat myself on her bed, cuddled right next to her, pressed play and cried for 13 (ish) straight minutes.
If you know me, like Lindsey does all too well, you know that sob stories get to me and I am an emotionally wreck for them. Weather it be “The Titanic’s” over-dramatic love plot, to videos of soldiers coming home from the army, to “The Butterfly Child’s” rarity, that shit hits me and it hits me hard and I love it.
Jonathan’s ability to let his love of hockey and devotion of never giving up exceed his excruciating pain inspires me. His mature views on life, living and appreciation are well beyond his young age. In addition, his maturity and wisdom are why I spent most of the video crying.
I love surrendering myself to someone else’s story and losing control because I am struck with emotion. I love the novelty of a new story and the feeling of discovering someone else’s fight. The raw emotion I get from another persons life is why I love stories like Jonathan’s. “The Butterfly Child,” and other stories in this documentary category, move me because throughout the video I become someone I am not—relaxed, saddened, speechless but I love it. I like finding peace and emotion in someone’s story.
I felt a constant discomfort while watching “The Butterfly Child” that allowed me to appreciate Jonathan’s battle. Throughout the 13 minute video, I got a small, but incomparable, glimpse of Jonathan’s battle through the emotions I felt for him. My ability to feel for him helped me connect with him. The “Butterfly Child” is amazing because it inflicts emotion, ethos and a small dosage of discomfort in its audience. I value the discomfort Jonathan’s story gives me because I feel humbled by feeling for his battle.
Jonathan’s story is why I am in the journalism school. He is what drives me to be at the other end of the screen and instill rawness, emotion and that humbling discomfort in an audience. I want to go beyond viewing and begin telling. Since J202’s start this semester I have struggled with finding my “why: “why” am I here and “why” am I a journalism major? The last few weeks have been hectic and overwhelming and I have not yet felt passion or fire. But after learning about Jonathan’s case and discovering him, I’m feeling myself, my excitement and my fire again and that puts me back on track.
Jonathan reignited my purpose and excitement of telling stories, and I am grateful for that.
Thank you Butterfly Child for showing me what I want to do and who I want to be. I’m looking forward to personally sharing stories like yours with the world.
Check out the Butterfly Child here:
