Monthly Archives: January 2015

What’s the HLHS Dad Up to for Heart Month?

Hey friends, I hope you are all enjoying a superb new year so far!  It continues to be a good one for us! So February is right around the corner and you know that means Congenital Heart Defect Awareness Week (7th-14th) and Heart Months as a whole.  Last year was a blast as I got to do the #32for32 Project and this year there’s a lot of good stuff going on too:

 

Camp Luck Conference

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On February 7th I will be participating in the 5th annual Camp Luck Conference!  This is an all-day, interactive event here in Charlotte where we’ll talk about the CHD Program at Levine Children’s Hospital, sports for heart kids, dental work for heart kids, yoga/relaxation, transplants, heart mom/dad-related subjects…it’s going to be awesome.  And I am also very honored to add that I’ve been added as a guest speaker as well….ohhhh if they only knew what was coming!  I kid, I kid…it’s gonna be great and I’m looking forward to connecting with other heart families and caregivers.  I will promise that we’ll laugh and there will definitely be memes involved.  If you’re in the area and want to attend the conference you still have some time!  Oh, and it’s FREE!  And for the college kid in you, that includes free breakfast and lunch…WHAT?  So what are you waiting for?  Sign up now: http://www.campluck.com/news-and-events/2015/2/7/5th-annual-camp-luck-conference

 

The HLHS Dad Goes to Washington

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So part of the reason I started this blog was to connect with other heart dads (and moms too) and to hopefully play a role in making a better world for Nolan and his fellow heart warriors.  I’ve been blessed with the chance to talk to many people about this, including fellow heart parents, medical professionals, the media, etc.  This time I get to take Nolan’s story to the next level: on February 25-26 I have the amazing opportunity to participate in the Congenital Heart Legislative Conference in Washington DC!  Thanks to an generous opportunity from the Pediatric Congenital Heart Association I will join up with other heart families to advocate for more CHD research and funding on Capitol Hill.  I will get the chance to share a small portion of Nolan’s journey with my member of Congress and hope to inspire some change.  It is going to be a whirlwind 2 days but man I am SO excited….I plan to pack my red bow tie and my blue shoes to represent CHD Awareness colors on Capitol Hill and make sure everyone who will listen hears about our heart warriors!

I’d love to know what my readers are doing for CHD Awareness Week and Heart Month: please share in the comments!

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Preemptive Love

In today’s post I will be reviewing the book “Preemptive Love: Pursuing Peace One Heart at a Time” by Jeremy Courtney.  In the end of the post I will talk a bit about this year’s project for CHD Awareness Week, it will all tie together, I promise!

Congenital Heart Defect Awareness Week in 2014 was a really special one: I got the opportunity to spread awareness via the blog and the 32for32 Project.  One day I noticed online that a group called the Preemptive Love Coalition was asking heart families for their CHD stories, and in exchange they would send the families a book called Preemptive Love: Pursuing Peace One Heart at a Time by their co-founder Jeremy Courtney.  I knew nothing about the Preemptive Love Coalition, but I thought, why not?  I love to share Nolan’s story, plus when it comes to books I’m totally like this:

BookNerd

So I sent along my story and even offered to write up a blog review of the book.  I received a reply from Cody Fisher, a co-founder of the group, who was excited to send me a copy of the book.  I know a lot of time passed between then and now, but I did finally get to read the book and want to take some time reviewing it:

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This book tells the story of Jeremy Courtney, a man who moved his family to Iraq with the intent to work with war widows.  As you know from reading this blog, life doesn’t always go by your plan…and this was very true for Jeremy.  While sitting at a hotel’s cafe doing some work, a local man came up and asked him, “Can you help my cousin? His daughter was born with a huge hole in her heart, and no one in all of Iraq can save her life.  Can you help?”  This request would change the course of his life.

This individual was quite convincing…Jeremy originally said he couldn’t help, after all: his organization wasn’t aimed at helping that type of population.  But in the end, he agreed to meet the father of the little girl, even though he knew nothing about this field of work.  After meeting the father and his daughter, Jeremy writes, “…I was moved by the idea that this little girl could die without someone who would take the risk and intervene.  And I knew I would want someone to take a risk for me if I was the one holding my Emma in search of surgery.”  The book goes on to chronicle how Jeremy took the girl’s medical file to Cody Fisher, who also worked for the same, larger relief organization.  It was through this meeting that Jeremy found out the real problem of congenital heart defects in Iraq and the massive backlog of needed surgeries for these kids.  Pediatric cardiology was nonexistent in Iraq at the time, and the existing facilities in the country could not properly diagnose or treat these cases.  Further, Jeremy learned that these heart defects were most likely due to a country torn apart by war, U.N. Sanctions, and – most terribly – Saddam Hussein’s use of chemical weapons on his own people.  In the last decade, Iraqis report 10 TIMES more CHDs than world averages.  That is astounding.  So what to do about this?  Would Jeremy Courtney pass the buck?  Spoiler alert: no he wouldn’t.

With the motto of “Love first, ask questions later,” Jeremy, his wife, and Cody began the Preemptive Love Coalition, which worked to provide live-saving heart surgeries for children in Iraq…but it wasn’t that simple.  I don’t want to spoil the book because you absolutely HAVE to read this story, but Jeremy and his band of heroes face so many crazy odds while making this work: they have to fundraise overseas and then travel throughout Iraq, even to areas considered completely unsafe.  Then they worked hard to start making these surgeries happen, successfully, only to meet a very difficult road block.  Still, they pressed on and other opportunities presented themselves.  But these challenges were very real, and definitely not related to mere paperwork or red tape…this was some serious, dangerous stuff.  I often found myself putting down the book and saying “Goodness, that’s CRAZY!”

And Jeremy Courtney: you are crazy…but in a good way.  He pressed on, and helped save countless lives.  Eventually the Preemptive Love Coalition began flying surgeons in to Iraq to perform surgeries and eventually train staff at medical facilities within the country: they call these Remedy Missions.  Since then, the Preemptive Love Coalition has helped provide surgery for well over 700 children.  AMAZING.

This book is compelling and inspiring, and it’s one you need to read.  Jeremy Courtney does an excellent job of outlining the problem with CHDs in Iraq and their effort to eradicate the backlog of children awaiting surgery.  This group sees this effort as a way to promote peace by bringing different cultures and belief systems together towards a common goal: saving children.  I encourage all heart families to get a copy of this book and read it with an open mind and an open heart.  While our struggles as heart parents are very real, without a doubt we take for granted the blessing of living in the U.S. or other developed countries, where access to hospitals with great equipment and well-trained cardiologists is relatively easy.  This will take your thoughts about CHDs beyond the borders of the country where you live.  It will make you see that this problem is so real and so painful in other parts of the world.

I’ll say it again: buy this book.  You won’t regret it.  To learn more about Preemptive Love, check out their website: http://www.preemptivelove.org/

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So here’s where everything is coming full-circle.  I got a copy of this book during CHD Awareness Week 2014…and I want to do something special for CHD Awareness Week 2015.  When Jeremy Courtney met the dad of their first heart patient, he put himself in his shoes…picturing himself standing beside the road, begging for every penny possible to get his child some help.  This is an image that I absolutely cannot get out of my mind…because I can see myself in that position too.  Would I beg on the side of the road to get him life-saving help?  You bet I would.  But do I?  Of course not, because a stellar children’s hospital is a 35-minute drive away.  It’s clean, well-staffed, and has state-of-the-art equipment.  I don’t know about you, but after reading this story I’ve realized that I take this access for granted.  Yes, the journey of a heart parent is a tough one regardless, and yes there needs to be much more research done for  CHDs.  But why don’t we stop for a moment and move our thoughts beyond our own borders?  What if it was you beside a dusty road in a war-torn country, clutching your heart baby to your chest, begging for someone, anyone to help.  You feel me?  SO LET’S HELP:

In the weeks leading up to CHD Awareness Week (Feb 7-14) and throughout the month of February, I will be raising money to send to the Preemptive Love Coalition.  I don’t intend to keep any of the money we raise…100% of it will go to help kids in Iraq.

I would like to challenge fellow heart families and other families to donate $5 toward this fundraiser.  That’s it…$5.   If you want to give more, that’s fine, but the goal is to initially raise $100, then find other individuals or businesses to match the $100 to see how much we can raise to help kids in Iraq.  Here’s how our money can help, according to the Preemptive Love website:

PreemptiveLoveDonation

So even if we only raise the $100, we can still do a great thing by providing some medical supplies!  So let’s do this, friends!  Go to this link where you can donate by credit card, even internationally: http://www.youcaring.com/other/help-provide-life-saving-heart-surgeries-for-kids-in-iraq/293306

Let’s think beyond our borders and support our friends in Iraq during the upcoming CHD Awareness Week…and please share the story of Preemptive Love and the amazing work they’re doing!  Thank you all in advance for helping with this fundraiser!