Shoes Worthy of a Heart Hero

The Pediatric Congenital Heart Association celebrates creative efforts to raise awareness and educate the public about congenital heart disease.  This post was written by Jacob’s mom to recognize his incredible achievement!  

In September 2014, Jacob Burris was unexpectedly diagnosed with a CHD known as a coarctation of the aorta.  His disconnected aorta was repaired surgically last year at the Oregon Health & Science University, OHSU Doernbecher Children’s Hospital in Portland, Oregon. The medical care he received was amazing.  Since then Jacob has become a heart health advocate for checking blood pressure since detecting his high blood pressure is how his CHD was discovered at the age of 12.  At home in Eugene, Oregon, Jacob passes out 1” pins that remind people in our community to ‘Check Your BP.’

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Thanks to an incredible partnership between Doernbecher Children’s Hospital and Nike, Jacob is one of six patients out of hundreds of thousands that were given the opportunity to design a one-of-a-kind pair of shoes & apparel that will benefit the hospital that saves children’s lives on a daily basis. Jacob took this opportunity to advocate for heart health and also, to share his CHD story with the hope that it will inspire others who are affected by CHDs to find strength and persevere through the rough times. Jacob designed a classic- the Air Max 95 Premium. His shoe design has a lot of ‘double meanings’ that he hopes will strike a chord with the CHD community.

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The shoe features a custom made circuit board pattern with his name worked secretly into the circuitry. The toe of the shoe is blue and transitions to red by the time you get to the heel. For Jacob, this represents his blood flowing strong through his once obstructed circuits.  The colorway doubles as a nod to his favorite superhero and inspiration, Spider-Man. On the back upper you will find Jacob’s two thumb prints overlapped into the shape of a heart and the sock liner has a heart rate monitor that says ‘I walk to my own beat.’ Jacob plays the drums and he loves that the drum beats, and so does his heart. The tongue has a “JB” logo, representing his initials. But, if you look closely you will see that the ‘B’ isn’t quite connected all the way – just as his aorta was disconnected, it actually forms a 13 which is the age Jacob was when he got to create this shoe.

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Jacob’s shoe also features the signature of Stan Lee – Spider-Man’s creator –  in the air pocket on the sole!  When Make-A-Wish granted Jacob’s dream to meet the legendary comic creator earlier this year, Jacob took the opportunity to ask ‘The Man’ if he would lend his signature to his custom shoe. Jacob is likely the biggest Spiderman fan you will ever meet and getting his ultimate hero, Stan ‘The Man’ Lee to sign off on the shoe was absolutely excelsior! Jacob also had the opportunity to work with his team of Nike designers to develop a very stylish hat and hoodie, which go great with his Air max 95 Premiums!

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Jacob hopes people in the CHD/heart health community will want to help him spread the word by wearing some of his custom designs. You won’t have to wait long; the collection will be available November 21st in select Nike stores and online at Nikestore.com with 100% of the proceeds going directly to OHSU Doernbecher Children’s Hospital.To date, this partnership has raised over $11 million for OHSU. Our family is very thankful to be part of a community with CHD heart heroes and warriors that fight for a better future for kids and adults living with CHD.

For more information about Jacob’s incredible story visit his website at www.jacobsheartstory.com and ‘like’ our page – Jacobs Heart Story – on Facebook to show your support and stay updated on Jacob’s mission to spread the word about CHDs and heart health!

It’s In Your Hands

Being a heart parent isn’t easy. That’s no news flash. You’ve run the gamut of emotions from scared, to sad, to angry, then rinse and repeat. Oh yeah, and life doesn’t stop and wait for you to get it together either. There are days where you feel like maybe you’re starting to get it together, then comes a week where you’re feeling like the worst parent in the world. Through it all you try your best to hold on, and in this whirlwind of craziness that is our life we find ourselves craving encouragement. Well, Mom and Dad: I’m here to encourage you today.

I want you to take a deep breath, let it out, and then think for a moment about your hands. Think of all the things you use your hands to do. Next look back on this past week or two and remember a time where you used your hands to do some good. Maybe you used them to calm your heart warrior after a fall and a scrape. Maybe you placed a hand on another parent’s shoulder to let them know you’re there with them in their struggle. Maybe you’re making your famous spaghetti and meatballs that your kids love. How do you feel when you think of that moment? Let yourself be filled with that feeling.

Parents, there’s something special in our hands: something that brings joy and peace and safety to others. And that – in turn – makes us better. Let’s face it, we’ve seen a lot of profane things in this world: the tubes, the monitors, the incisions, the open chest and beating heart. We experience real fears and anxieties, real trials and struggles. In the midst of these things, though, is the work of our hands…and that work is sacred.

So when you’re pumping in that last tube feed and you’re tired, or you hammering out a supportive text message to another parent, or you’re shaking the hand of a lawmaker as you advocate for heart kids, or you’re snapping a fussy toddler with a beautiful scar into a car seat, I want you to realize that it’s sacred work you’re doing, in the midst of all the profane things we face. And when you get down and you feel like it’s all for nothing, I want you to close your eyes, take a deep breath, and think about what your hands have done this week. Create a special place in your mind where that feeling resides and make sure you always go back to it. Because you’ll realize that after close inspection, your hands are often busy doing very sacred work. Stay strong, parents.

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BlogHeadshotChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

 

Where You Least Expect It

So I learned a lesson from a monkey…and not even a real one at that…

My son Nolan has been into a variety of toys and stuffed animals, but not really anything he’s latched onto.  Until he found the monkey.  You see, the monkey is a not-flashy stuffed animal that was actually part of a diaper cake that was made for us when we had a baby shower for our first son, who is now 5.  Somehow this monkey has traveled with us all these years, looking for the right child to obsess over him.  Enter Nolan.

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Needless to say, Monkey is Nolan’s homeboy.  Well one day things got interesting, because it occurred to us that we hadn’t seen Monkey in awhile.  Was he in the van?  No.  Was he under Nolan’s bed?  Nope.  In the wash?  Nah.  It was a great mystery.  The good news was that Nolan actually hadn’t been asking for Monkey, so we had time to figure it out.  What I was dreading, however, was the thought that Monkey was lost somewhere, like the grocery store or the mall.  Then, out of the blue one day, Nolan started asking for Monkey…and he walked around everywhere with my wife looking for him.  Oh boy.  So I ran upstairs and began looking myself.  I looked in the closets and in all the rooms, behind dressers, etc.  No Monkey.  I was exasperated.  Where the heck was the Monkey?

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Then I looked at the place I would’ve least expected it.  See, the underside of my oldest son’s bed is actually two big drawers that pull out.  Of course, I already looked in those drawers for Monkey with no luck.  Something told me to pull the drawers out and see if, by some CRAZY chance, the Monkey was back there.  I got down on the ground, looked, and there he was!  It was a triumphant moment as I bounded down the stairs and victoriously presented Monkey to my happy little boy.  YESSS.

So what on earth does this have to do with anything?  You see, as a Heart Parent sometimes things get difficult, sometimes they’re frustrating, and sometimes they’re just plain overwhelming.  There’s not enough time, not enough sleep, and not enough good news to go around and make things better.  We know what it’s like aimlessly roaming the hospital halls just waiting, or that nervous feeling in the pit of your stomach when the calendar inches towards the next cardiology appointment.  In those crazy moments, there exist other moments of joy, victory, and confidence.  We always want those things to exist in places where it’s obvious, almost like it fell out of the sky into your lap.  I wish I could say that’s always the case.  You have to find those moments…and often they’re not where you expect them to be.

It can be in the car, stuck in traffic, when the song comes on…you know, the one you haven’t heard in foreeeeever, that makes you smile.  Or it could be that other parent, you know, the one who has it all together while you’re a mess; and they tell you you’re doing an awesome job.  Or maybe it’s on that day you have to leave for work at 5am and you look up at the stars still in the sky and the beauty of it takes your breath away; and you realize that while your world isn’t always perfect, it can still be stunning.  Friends, don’t let those moments pass you by: they’re like little treasures that you stumble across from time to time and if you learn to appreciate them, you won’t be able to help but to smile and get that feeling like “Hey, I’ve got this!”  So don’t forget to look around from time to time, find moments where you can help others, find your “monkey,” and remember that it’s ok to just smile and laugh sometimes!

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 Chris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.