Friday, December 30, 2011

Ben.

This past week, through Facebook and other forms of social media, I became aware of the story of Ben Breedlove. He was an 18-year old young man from Austin, Texas who suffered from hypertrophic cardiomyopathy (HCM). On December 18th he posted a two part video telling his story on a series of handwritten index cards. He talked about the times he had cheated death and how his life was spent coping with his condition. I saw the videos posted from several heart families that I am friends with on Facebook who made a point of stating not to watch them unless you had your tissues ready. I haven't watched them until today for this reason and I have to say, they were right. 



   

These videos really hit home for me. While Lukas' heart condition is very different from HCM, seeing those words from this brave young man struck me deep. Through my tears, I couldn't help but think of Lukas. Someday, he is likely going to feel some of those same things. The disappointment of not being able to play some of the same sports as his brothers, being fussed over, getting sick, having surgeries, doctors appointments, the whole nine yards.  With each card, all I could do was look at Lukas and think of him; how his heart condition will affect him and how his feelings toward that condition will develop and change over the years. I can't say I know what it feels like because I've never walked in those shoes myself. But seeing him, seeing Ben Breedlove on that screen telling his story...well it puts things in perspective. 

Today, I'm snuggling my boy extra tight. I'm sucking the marrow out of life and relishing in every good day he has. Mostly, I'm thanking God that he's still with us. I will spend everyday for the rest of my life being grateful and feeling blessed that I get to know this darling boy and call him my own. Seeing Ben's story left me with a new perspective today. What these kids deal with is real and its so hard. They don't get to breeze through life. They cope with things that are far beyond my level of comprehension. They feel fear and worry over things that children their age shouldn't have to.  Yet somehow, despite it all, these kids keep going. They cope and they go on living. They show people like me what it means to really live. What it means to never take things for granted. These kids do big things and they make their mark on the world. They take each day as it comes and they learn to shape their world despite their heart conditions. They possess courage and strength that can't be depicted in words, only felt in the heart. That's something to be admired. 

So to Ben Breedlove and all the other heart kids in our world - you guys are heroes. You don't have to be invincible or bulletproof to be miraculous. You guys are real life heroes. Each and every one of you. 

Happy Friday friends. Until next time...

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3 comments:

  1. I loved these videos and have to agree...these kids are heroes. I hope my daughter will be as inspirational to others as Ben was to me.

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  2. I watched this earlier today here on your blog and then I read on People.com (of all places!) that this young man passed away on Christmas day.

    Here is a link to the story if you have not yet seen it.

    http://www.people.com/people/article/0,,20557728,00.html?xid=rss-topheadlines

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  3. Hi LukasMy name is Jenna and I came across your site. You are an amazing, precious gift and special earthly angel. You are full of courageous, strength, determination, and fight. You are a brave warrior, smilen champ and an inspiration. You are a super hero, super trooper, and a tough cookie. You are full of life, spunk, joy, smiles, and sunshine. You have taught everyone about life, and the gift of life. You will be in my thoughts and prayers. http://www.caringbridge.org/visit/champ291 I love it when people sign my guestbook. i was born with a rare life threatening disease, and 13 other diagnosis.

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