A couple of weeks ago I saw a video circulating on Facebook titled “The Butterfly Child”. The screen shot and headline of the video told you pretty much what it was all about. We’ve all seen this video before.
A kid suffering.
We watch it, feel for the child, cry, get inspired and forward it to friends and family.
I wasn’t so much in the mood of seeing a child in pain, so I never clicked.
Time out, for a quick sidebar.
Nowadays, you can’t just casually peruse the web.
A casual wait at the bakery. A glance at the news. Boom. Slam to your kishkes as you read a heart-wrenching story. These punches to the gut come without any warning. It’s a beautiful day, the world is smiling and within one glance at our phone, we are thrust into this painful place, completely unprepared.
Eating breakfast and casually perusing a news site? Not a good idea.
Instead of being judicious in our consumption of media, we build defensive walls or try our best to mentally and visually skip over these types of stories.
A few days ago this video with the child in pain showed up in my inbox from my older brother, Zalman. Rabbi Marcus, as his community refers to him, is a busy dude. Teaching, counseling, hospital visits, raising a family, leading a community, he’s not the “let-me-send-anything-that-is-remotely-interesting-to-every-person-i’ve-ever-gotten-an-email-address-from” type.
I watched it.
Have a look.
Just be aware that this isn’t a casual video to glance at while you scoop another spoonful of cereal. It’s powerful and inspiring. But if you can’t handle watching a child endure excruciating pain, daily, don’t watch it.
If you chose not to watch it, this is an exceptionally produced video by The Sports Network (TSN), about a very special soul named Jonathan Pitre. For reasons beyond our comprehension, he suffers from Epidermolysis Bullosa, one of the most painful conditions known to modern medicine. Kids with this illness are called Butterfly Children, because their skin is as sensitive as a butterfly’s wings. Watching Jonathan and his mom doing the bath and bandaging ritual is excruciating.
Despite the unimaginable pain Jonathan faces every day, he tells us in his articulate, wise-beyond-his-years voice, that “I’m here, and I’m going to go step by step, day by day, and you never know what the future holds. I may live to 100….I’m not going to stop anytime soon, I’m going to keep going.”
Jonathan loves sports and when the NHL’s Ottawa Senators find out about his love for hockey, they graciously invite him to be a scout for a day, sit in the owners box and hang out with the players. He also gets to spend some quality time with the NBA’s Toronto Raptors.
There are so many things to say about this story.
Theodicy. How can He do this?
Courage, strength and character. Where does Jonathan draw the strength from?
Moms. G-d’s most important creation?
I would like to focus on a different part of this story.
There’s a moment in the video when Jonathan comes into the Senator’s media-room, for what looks like a surprise press conference with the Ottawa Senators’ General Manager, Bryan Murray, to announce Jonathan‘s signing with the Senators as a scout for the day. The media-room looks like all the others we see after games when the players and coaches weigh–in on the game that just was. There’s the press wall background, flashing bulbs and table with microphones set up.
But something happens in the moment when Jonathan enters that room that causes him to shyly smile, put his hand to his forehead and shake his head. As if to say “I can’t believe you guys did this for me”, a gesture that engenders laughter and a giant smile from Jonathan’s mom.
It’s a genuine moment captured by an excellent production team.
Something about that moment brought tears to my eyes and reminded me of something we often lose sight of.
Did the Senators and Raptors do something really nice to help a kid with an awful illness? Or did a bonafide hero grace these teams with his presence?
“Strength. Character. Courage. These are the qualities we worship in our sports heroes.”
Whoever wrote the opening line of the video might have been reaching a bit or perhaps channeling his ability to only see the good in people.
The word that most applies to our society’s relationship with celebrity is “worship”.
I’m afraid though that much of athlete and celebrity worship is a far cry from appreciating courage, character and strength.
Did the celebrity, mega-millionaire athletes, who appear on MTV Cribs with garages bursting with cars, act magnanimously?
Or did Johnathan give the celebrities a raison d’etre?
Amongst many other things, this video serves as an important reminder of who the real celebrities are.
And that when it comes to celebrities, the only thing that’s worthy of envy, is their enormous ability -and responsibility- to bring so much joy and light into other people’s lives.