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3forCHD Project Wrap-Up

Hey everyone!  I hope all my friends out there are doing well: I decided to take a little break from the blog after the awesomeness that was the 3forCHD Project…but now I’m back!  So you might be wondering – how did the 3forCHD Project go?  I have to say it was fantastic, inspiring, moving, exciting, and all sorts of other great adjectives.  People all over the world participated and shared on social media and on our Facebook event page and it was just really touching to see how people were joining together to do some good in their world.  People bought food for others, shoveled snow, made cookies…it was just incredible.  I also wanted to share a little bit about how it went for my family:

We kicked off early as my oldest son Hudson was really excited and wanted to set up a free drawing station at the 7th Street Public Market in Charlotte.  It’s a busy place where people can come and get food from all sorts of different vendors and it’s a place we love to go.  So Hudson set up shop and made drawings that he gave away to people to bring smiles:

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He did a really nice job and I was really proud of him for being so kind and for helping share information about his little brother’s CHD.

A couple days later while in the drive-thru for Dunkin Donuts, I decided to pay for the couple behind me – they got the hook up:

3forCHD DD

Hudson was at it again as we both volunteered at a friend’s church for a program they have called Room at the Inn: they bring in homeless people from a local shelter and give them a home-cooked meal, showers, a warm bed, and a roof over their heads for the evening.  Hudson is really passionate about helping the homeless, which is amazing for a 6 year old.  He worked really hard setting up beds and helping serve food:

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Finally, Hudson brought some chocolates to his teacher:

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One of the activities I did was to volunteer for a few hours at one of my favorite organizations called Bright Blessings.  They provide birthdays for homeless kids in the Charlotte area, and it’s since expanded into providing snacks at schools for kids who may  not have them, toiletries, and even baby supplies for new moms who don’t have resources:

3forCHD BrightBlessings

I spent most of my time prepping goodie bags for the birthday parties and then moved to packing snack boxes that would go to the local schools:

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I can’t say enough about how much I love what this organization is doing!

Our family continued to do some other kind acts together, like giving chocolates to our mail carrier and bringing donuts to our local firefighters.  The kids especially loved that part…sorry, I didn’t get pictures for that one!

Next, I was off to volunteer at an organization here in Charlotte called Project 658.  They provide resources and support for our refugee community.  It’s easy to see why this population needs a lot of help, especially lately.  My task for the day was to assist with their free store, where clients received credits each month so they can come “buy” clothes.  It encourages them to learn budgeting and some responsibility:

3forCHD Project 658 -2

I spent the time sorting clothes and hanging them up and chatting with shoppers…I found it was a great way to help them with their English, since many of them were in ESL classes as well.  There was also a sewing class going on in the back, which was very cool to watch.

My final kind act for the 3forCHD Project just might be the one that had the greatest overall impact on me personally.  I collected some food items to donate to a local Mosque’s food pantry: when I was corresponding via email with the Imam, I also asked if I could just spend some time chatting with him and learning about his faith.  He readily agreed to have me visit.  I’m not a Muslim and what I know of the faith is really just the few things I learned at school, so it was a very cool experience to go to a mosque – I’d never been to one before – and learn.  Everyone there was so friendly and welcoming and made me feel very comfortable.  The Imam gave me a crash course in Islam before inviting me to observe their prayers.  As I sat in the back of the room, I felt very privileged to get the chance to be there and watch all this happen.  I got to see all these people – from different backgrounds, different races – standing shoulder to shoulder and praying together.  It was peaceful and very moving: I was so glad to get the chance.  Afterward I chatted with the Imam some more and someone brought me some Pakistani tea, which was AMAZING.  I’m not a tea drinker but this stuff was fantastic.  But aside from the tea, it was such a great experience:

3forCHD mosque

Around the time I did this, there was a lot going on in the media with the travel ban and a lot of fear of Muslims.  I wanted to do this to show people in my community that our Muslim friends are just like us: nothing to be afraid of.  In fact, lots of Christian churches could stand to learn from the kindness I was shown at that mosque.  I firmly believe that we need to build bridges, not walls!


Overall, the 3 for CHD Project was a really great success: we got to do kind things for others while spreading the word about CHDs.  I truly believe it has an impact and I can’t wait to do it again next year!  Are you with me?

And if you didn’t get to participate this year, don’t worry: don’t relegate kindness to one week in the year.  Make the 3forCHD Project a living thing that goes on and on and on!  Keep being kind, never stop!

Hendrix

The 3forCHD Project

You guys, I am super excited about this post because I get to announce a really awesome opportunity to spread CHD Awareness.  So about 3 years ago I did something called the 32for32 project, where I did 32 acts of kindness for my 32nd birthday in order to raise CHD Awareness.  The following year I was able to do some lobbying for CHD research in Washington, DC, which was amazing.  Last year I did 10 acts of kindness in 10 locations in the area and when you looked at them on a map it made the shape of a heart.  Each of those projects gave me a really great chance to teach people about CHDs while doing some great things for people in need in my community.  Over time I’m heard from people who were inspired by this and wanted to be a part of it somehow…well here is your chance!

I’m happy to announce the 3forCHD project!

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During this year’s CHD Awareness Week, February 7-14, I want to unite heart families and friends all around the world and encourage them to do three acts of kindness in an effort to educate people about congenital heart defects and hopefully play a part in finding a cure.

Three.  That’s it.

Three things: that can be feeding the homeless, volunteering at a nonprofit, bringing treats back to the staff at the children’s hospital where your heart warrior got their care. It can be anything!  It doesn’t matter how much money you have, it doesn’t matter where you live.  All I’m asking is for all of you to join me during that week to make a real difference in people’s lives.  Imagine if 100 of us do this: that’s 300 acts of kindness…300 real, tangible ways for us to help people in need!  That’s AMAZING!

So I need you to step up and do this with me, I need you to be excited about this with me: I want you to share this with your friends and family.  Invite them along: maybe partner with other families where you live and do something awesome together.  Whatever it is, I know that together we will make a big impact!

I’ve made a Facebook event page where you can “join” the event (keep in mind you’ll be doing all these activities right where you live) and post pictures, videos, and stories of your acts of kindness using the hashtag #3forCHD.  You can use the same hashtag to share throughout all of social media leading up to and during the event.  Let’s take this thing worldwide!

I’ve also made up this handout for you to use:

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Print some out and give them out when you do your 3 acts of kindness.  Once Feb 7th hits, I will add a “sticky” post to the top of my blog that will welcome anyone who has received this handout and is brave enough to come here to this blog.  It’ll have more information about CHDs and what they can do to continue being involved.  It’ll remain there for a couple weeks after the event, too.

Will this require some money? Maybe.  Will this require your time? Yes.  But what we need – most of all – is your heart.  I believe that if we give back, with all our hearts, we will create a movement where people know about CHDs and will help us make enough noise to increase funding for research and one day find the cure.

So I have just one more question for you…

WHO’S WITH ME?

 

 

CHD Awareness Week: A Recap

So before you say anything, I realize I am WAY late on this post.  Better late than never, right? It occurred to me that I never posted any kind of recap on what I was up to for CHD Awareness Week, which – if you remember – was waaaay back in February.  So here’s some background:

I wanted to do something that raised CHD Awareness but also gave back to the community.  Sometimes that’s a really difficult thing to do.  A couple years ago I did 32 acts of kindness for my 32nd birthday and it was amazing, but it also talk almost all of 4 days to complete and I needed something that could be accomplished in one day but was still impactful.  The problem was, I couldn’t think of a single thing.  I loved the idea of acts of kindness but how to freshen it up for 2016?  Then the answer came…a heart.  But not just any ol’ heart: a heart that gave back and raised awareness.  You see, the plan for this year was to do 10 acts of kindness in my area in 10 specific locations…and when it was all said and done and all those locations were mapped out, it would look like this:

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At each location I would leave behind information about Congenital Heart Defects.  So after coming up with a plan and coming up with all my stops, it was time to kick it off on the morning of February 10th, which was right in the middle of CHD Awareness Week.

Stop #1: Nolan’s preschool

The first stop was to Nolan’s school: we wanted to bring some heart balloons and treats to his teachers to show them how much they really mean to us.

Admit it, he's stylin'

Admit it, he’s stylin’

There are not a lot of preschools lining up to take a kid with a heart defect AND a feeding tube.  But they graciously took Nolan once they saw he so desperately wanted to be with his twin brother in school.  And it’s been so great for him: he has learned a lot and his teacher is the BEST.  The visit went nicely and I think Nolan enjoyed giving out the balloons and CHD awareness info.  And then we were off to the next stop!

Stop #2: Mint Hill Public Library

This stop was a lot of fun because we made some really cool sun catchers out of red and blue beads (CHD Awareness colors) to bring to the library so they can be displayed in their front window.

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We also donated a few books, including “My Brother Needs an Operation,” which is a CHD book that was donated by the super awesome Baby Hearts Press (please visit them here, and buy like 10 books!).  Nolan loves books and was excited to bring some to their staff.  Wanna know something wild?  So while I was planning this particular stop, I was emailing the manager of the branch, who was very helpful but wasn’t there yet when we arrived.  When I followed up with an email thanking him, he told me he also had heart surgeries in his youth, “with the scar to prove it.”  How awesome is that?  It’s amazing the connections you find out there!

Stop #3: Robinson Presbyterian Church

So we were doing well on time (I was trying to keep on a schedule) and everything was going quite smoothly.  This stop, though, was one I was really unfamiliar with and ended up being one of the most touching. You see, when I came up with this plan of a heart-shaped map, I drew the heart first around the city then worked on figuring out what fell along that route.  Sometimes that was easy, sometimes it wasn’t.  In this case, my Google maps search found this church in Charlotte.  I’ve never been there and to be honest I can’t recall ever even passing by it before.  But I found out that they had a ministry called Room at the Inn, where during the colder months they bring the homeless in and give them a warm meal and a warm place to sleep before loading them up with more food and some toiletries.  I offered to collect some toiletries for their program, which they were happy about.  I collected these by hosting a pizza party at our house and having attendees bring some toiletries to be donated.  So we ate good and we did good: thanks all my friends and neighbors!

Just a few of the items we collected

Just a few of the items we collected

Anyways, while I was arranging this drop-off, the guy on the phone told me no one would be in the church office, but the lady who ran the church preschool would be there and to drop off the items with her.  No problemo.  When I arrived at the church, I was also greeted by a reporter from our local NBC affiliate, WCNC.  He was really awesome and wanted to share our story and follow me around a little bit.  Nolan thought that was awesome.  I walked up to the preschool door and rang the bell: holding a big bag of toiletries, a toddler, and being followed by a cameraman.  This was gonna freaking this lady out, I was sure of it.  But when I explained to her what I was doing, she was overcome with emotion.  Apparently she was just told “Some guy is dropping stuff off for the homeless” but she got no other info.  Turns out a very good friend of hers in another state had a child very recently who was born with a CHD and just went through their first heart surgery.  I totally didn’t expect this.  We chatted for a bit and she got to see Nolan and how well he’s doing.  At the end I gave her a big hug and thanked her, and she instead thanked me…she told me it was the best part of her week.  I can’t express how touching this was…and how clear it is that CHDs affect us all!

At this point I said goodbye to my wife and Nolan so they could head back home and get out of the cold.  Off I went with the cameraman to more stops!

Stop #4: Center for Community Transitions

This is another group I had heard of before but didn’t know much about.  When I looked them up online I found that they’re a program to help those with criminal records and their families turn their lives around.  A big part of the work they do revolves around schoolwork and tutoring for kids whose parents might be in prison or just getting out.  For this program they needed school supplies and I was more than happy to help.  So I brought a couple bags of supplies to the Director and Volunteer Coordinator:

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They were so thankful for the items and I told them this, and I will forever believe it: I hope that those supplies can lead to a child somewhere in our community being VERY successful in school…and I hope that kid grows up, goes to med school, and finds the cure to CHDs.  Wouldn’t that be amazing?!  It sounds corny, but I truly hope and believe!  To find out more about the amazing work of this group, click here.

Stop #5: Urban Ministry Center

This was my final stop with the cameraman and he was a lot of fun to hang with.  Urban Ministry Center is an amazing program that seeks to end homelessness in the Charlotte community by helping the needy find homes, providing food, helping with access to healthcare, and providing laundry and shower services.

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This day in particular was pretty freezing, even for Charlotte, so as you can imagine the line to get in this place was super long.  My job for the hour was to work in the mail center, which I found interesting.  They allow the homeless to use their location for a residential address, so they can apply for jobs, receive important mail, and even apply for a free government cell phone so they can call about jobs and schedule interviews.  That’s pretty awesome and I never thought about how much power was tied to having an address.  So I hung out there behind the desk and whenever a neighbor would come asking about his or her mail, I’d check their ID and see if there was anything waiting for them.  Some people didn’t have anything and they were cool with that…some people had stacks of stuff…some people were upset because they were waiting on something.  Nothing too out of the ordinary, though, and I really enjoyed my time there.  There were SO many people waiting for a hot meal and for other services…it really made me focus on just how good I’ve got it in my life, even on my absolute worst day.  I still have a place to sleep, food to eat, and clean clothes.  We take so much for granted.  To learn more about Urban Ministry Center, click here.

Stop #6: Levine Children’s Hospital

You know there wasn’t any way I was doing all this and not giving back to the place that saved Nolan’s life, right?  I always love going back to visit our “family” in the CVICU.  As a visitor, of  course.  I brought the CVICU staff some more of those sun catchers as well as the heart balloons.  But the big part of my visit was to present them with a very special book.  In the days leading up to this, I reached out to heart families in our area whose kids were treated in that particular CVICU.  I asked for stories, notes, and photos to be included in this book of thanks.  The goal was for the book to be kept on the unit so that whenever the staff was having a hard day or was feeling down, they could flip through the pages and see the proof of their hard work and the many lives that were saved.  It made me so happy to share this with the staff and I could tell they were genuinely touched by it.  We wanted to provide something with real meaning for these folks, and I think we did well.

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It’s always crazy to be back on that unit and hear those familiar sounds.  I told them Nolan and I would be back soon…but not for long.  And that hopefully we’d never have to see them again (of course I meant that in the nicest way possible).  Love you guys!

At this point I realized I was starving like a BEAST.  So after getting some grub, I was off to the next stop.  And I had to hurry because I was a little bit behind schedule now.

Stop #7: Police & Fire Training Academy

In a past life I used to work for the police department as a civilian employee and enjoyed my time there.  One thing I realized was that police officers really like to eat good stuff.  So I stopped at a local Panera and picked up a bunch of bagels to bring to the Police & Fire Training Academy for the staff and recruits.  It was pretty fun to be back in this place, it’d been so long

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The receptionist in the lobby was so friendly and we spent time talking about Nolan and his journey.  She said she was so happy someone came to do something nice for their team and that it would go a long way.  She said she’d share Nolan’s story with everyone and their thoughts would be with him.  Can’t ask for better than that, right?

Stop #8: Someone’s About to Get Caffeinated! 

So this is the point where the stops became quicker and I don’t have any more photos, but they were still fun. At this stop I pulled into the drive thru at Starbucks and ordered for myself and then paid for the person behind me, leaving behind some CHD info.  The barista at the window read over the little card I gave him and he was like, “This is really cool…my daughter works at the ICU at Levine Children’s”.  Small world, right?

Stop #9: Another Panera

This stop was kinda funny because I planned to buy someone’s lunch at Panera but didn’t exactly know how to execute the plan since when I got there I was the only person in line.  Whoops.  So I acted like I was pondering the menu…for a looooooong looooong time.  Finally a man came in with his mom.  That’s when I pounced: I ordered a gift card and then turned it around and handed it to the woman with the CHD info and said “Enjoy lunch: have a great day!” and left.  She looked at me like I was NUTS.  And yes, I am.  I ended up getting a very nice email from that gentleman about a week or so later.  It was really cool of him to reach out to me!

Stop #10: The Final Stop – Charlotte Pediatric Clinic

While Cardiologists get all the fame and the glory, I wanted to take some time on this day and recognize Nolan’s pediatrician, who is an amazing doctor…and an amazing human being.  Seriously, Dr. Prosser makes sure that there’s always an extra nurse available to help when my wife visits and so she won’t have to wrestle all 3 kids during the whole visit.  She’s super flexible and kind and makes us feel welcome and like we’re family.  So we brought her and her staff some flowers and balloons and cupcakes.  A very sweet ending to the day!


 

I was thankful for the opportunity to take a day off work and run around the city doing fun, nice things for people.  It’s grounding for me to know that there’s so much need and so many great people doing hard work to meet those needs.  Puts my struggles into perspective for sure.  Plus I was able to spread the word about Congenital Heart Defects, and I know deep down inside that will make an impact too.  What will CHD Awareness Week in 2017 hold?  I have no idea, it’s too early for that.  So in the meantime, please check out the WCNC story on my CHD Awareness Project: Charlotte Dad Honors Son.

So You’ve Just Become a “Heart Friend”…

Hi friends! Guess what: it’s Congenital Heart Defect Awareness Week! During the week of February 7-14, heart families around the globe will be celebrating their heart warriors and raising awareness in their communities. I am going to be posting several entries this week so please make sure to come back often and share this blog with others!


 

Today’s post is directed towards a group I haven’t really addressed on this blog: friends. Maybe you know someone who has just found out they’re about to have a baby with a congenital heart defect. As they become Heart Parents, you will now become “Heart Friends.”  Soooooo…now what?  I mean you’ve heard the news, you’re devastated too, but deep down inside you have no idea what to say or do. Well you’ve come to the right place because I want to give you some pointers from a heart parent’s perspective.

You Don’t Need to Know What to Say

I think human beings are wired with this need to say something – anything – when faced with difficult news.  This is how we’ve arrived at those wonderful, brilliant phrases like “Well you know…God will never give you more than you can handle!”  Mmmhmm.  Or how about this one: the Facebook “like” button.  How many times have people responded to a serious or sad facebook post with a “like”?  I mean you don’t actually like that someone had to put their dog down, right?  But we feel like we have to say something, because if we don’t we’re cold-hearted – or at the least – very awkward.  I understand: you want to be a good friend, and you want your friend to feel better, so you desperately search for the right thing to say.  Most times, however, there never is a right thing to say…sometimes you just need to listen, and sometimes you just need to be there.  And don’t forget the hardest part: try to put yourself in people’s shoes, if you can.  It can change how you think about a situation.  This is what’s called empathy, if you’ve never heard of it.  So what is empathy?  If you’re tired of reading and prefer learning about things through cartoons, then you’re in luck:

I love this video.  The biggest takeaway for you is this: rarely does a response make everything better.  What matters is connection.  The good news is that you’re already a friend: you already have that connection.  So just be there, just listen.  Bring tissues…and chocolate.

Educate Yourself

Your friends are going through emotional and informational overload.  As they learn their way through this, it might be helpful for you to do the same.  Check out this fact sheet from the Pediatric Congenital Heart Association: CHD Facts.  Did you know CHDs are the most common birth defect?  Do you know there’s no cure?  Do you know about needed surgeries?  If you don’t, you can definitely find out more: get online and do some research instead of taking your 57th Buzzfeed quiz of the night (no offense to Buzzfeed, of course!).  Listen, you don’t need to become some kind of overnight medical professional: heart parents aren’t either.  But what you can do is show how much you care by at least trying to understand what’s going on.  It goes back to empathy.

Sometimes Being There For Your Friend Doesn’t Actually Mean Being There

Being a good friend is a great, important thing.  You wanna be there during this tough time; you wanna be that rock.  You got this.  And this is awesome, please keep that attitude going.  While your friends are running around to appointments or living in hospitals, though, sometimes the best way for you to be supportive is away from your friends.  Listen, your friends aren’t gonna ask for you to help with things like mowing the lawn or cooking meals or playing with their other kids.  But think about it: who the heck is gonna do that stuff while they’re at the hospital?  Oh yeah…YOU.  Go mow the lawn, make a few meals to stash in their freezer.  Offer to pick their other kids up for a play date.  Go clean their house.  Run an errand, pay a bill, anything…you don’t necessarily have to be there to be there.  This is so important, friends, because this is something all heart families need, but they won’t often tell you about it.  So be a cool friend and just do it!

Be a Good Example: Know When to Stay Away

There will be an exciting time when your friend’s baby comes home and you cannot wait to go over and snuggle that little warrior.  But let’s pump the brakes a little, homie.  Coming home from the hospital is a crazy time: we crave the assistance and connection from people, but it’s also a time for us to learn the “new normal” and to be scared to death of illness and infection.  So we get a little stank and tell people to stay away.  It’s alright.  Just know that you’ll need to sanitize when you come here, and if you have a cold – well – a call or text will work wonders.  It’s a tough time for parents because we desperately want to see people but we also desperately want to avoid going back to the hospital with our little ones.  So we spend months fighting off those well-meaning friends and family members who ignore our rules and come over with their coughs and snot-nosed kids.  Heck no.  Be the best friend you can and know when to stay away.  Your friends will greatly appreciate you for it!  We have some amazing friends that we never met before they just came to our house to drop off food while Nolan was in recovery.  They were new members to our church’s small group and they just signed up to bring us food, and we never even met them before.  It was such an immense gesture of kindness and it will always mean so much to us…we’re so glad to call them friends.

Keep it up, Even When Things Seem “Fine”

Surgeries and hospital stays are scary times.  Once those have passed, it’s easy to look at things and see that things are “fine.”  I say “fine” because nothing’s ever 100% fine.  While the surgery might have been successful, and the therapies might be working, that doesn’t mean the child is cured, that doesn’t mean the parents aren’t scared, and it doesn’t mean things will always be in the clear.  Things can change overnight, and that’s always on our minds.  There are times where we get overwhelmingly sad, there are times where we are exhausted, there are times where we’re just trying our best to get out of bed in the morning…that’s when we need our friends.  This is so important!  Keep being there!

Things Won’t Always Be the Same

Having a child with a CHD means you’re going to live with a “new normal.”  This applies for friends, too!  You’ve got your friend’s back and I’m glad you do, but please don’t expect that after a little while things will go back to the way they were.  I’m not saying a heart parent will stop being your friend, what I’m saying is that their ability to spend copious amounts of time away from home will be less.  Believe me, they want to hang out the way they used to, it’s just not possible.  That, and they’re tired…always, always tired.  But hey, we can’t help it.  Just be flexible, be understanding, and please never stop inviting them to stuff, even if they can’t come over and over.  They’re not being mean or messed up or lazy.  They just can’t.  And when they can, it’s awesome for everyone, especially the heart parent.  It’s like freedom.  So don’t give up!


 

I always contend that each heart kid needs a good team around them, whether it’s medical professionals or family.  Friends are often the forgotten group in this whole equation.  So Heart Friends, I want to tell you that you’re also part of this team…and an important one too!  Keep being there, be strong for us: keep listening and keep loving.  You mean so much more to us than you’ll ever know!

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Let’s Hear it for Charlotte!

Happy CHD Awareness Week, friends!  I hope everyone is doing their part to make people aware of CHDs and fight for more research and funding.  I wanted to take a moment and brag on the city of Charlotte, which has been home to some amazing people and providers that further the cause of CHD Awareness:

Camp Luck Conference

As I mentioned in my last entry I had the awesome opportunity to participate in the 5th Annual Camp Luck Conference on February 7th (I was even a speaker too!)

CampLuckConference

It was a really awesome time as over 90 people registered for this full-day conference to learn about CHDs.  I got the chance to see lots of friends and even meet some new people.  My son’s Cardiologist, Dr. Sliz gave a really wonderful presentation about CHD Kids and Sports:

Sliz

It was really great how he broke down the suggested types of competitive sports for each kind of CHD.  I’m hoping to flesh out a blog post for another time based upon his presentation, so look out for that!

I also had the chance to learn about the development of the human heart, how it functions, how CHDs can develop, and the future of heart research from Dr. John Klingensmith from Duke University:

Klingensmith

I found it absolutely fascinating and I’m looking forward to seeing what strides we can make towards heart repair!  Kudos also go out to Dr. Klingensmith for staying and sitting through my wacky, meme-filled presentation!

This year’s conference also featured a trio of teens on the Heart Kid Panel who talked about their experiences and live with their respective CHDs.  This was really inspiring and I applaud these heroes for stepping up to share their stories…for a father of a very young heart kid, it’s REALLY encouraging to see teens who have made it through their surgeries and are doing SO well.  Trust me, it’s such a good feeling to know success for our kids is out there, it’s attainable!

Finally I got to give my presentation (sorry I don’t have a photo) to a group of victims captive audience and I have to say, it was actually a lot of fun.  Or, at least, I had a good time!  I’m not going to spoil my presentation in this post, as I’m trying to think through how to best present it on this blog.  But if you missed it, hopefully there might be a chance for you to catch it again another time.  Just sayin 🙂

Anyhow, it’s really awesome that such a conference exists in Charlotte.  I remember attending my first one last year (which was interrupted by Nolan’s admission to the hospital for low o2 sats…because that’s Nolan!) and this year’s group was WAY bigger, so kudos to everyone from Camp Luck who played a part in putting this together.  I hope this Conference continues on for 50 years and beyond, because it’s a great way for heart families in the area to learn and support one another.  I’m already looking forward to next year’s conference!

Levine Children’s Hospital

If you read this blog for, like, more than 5 minutes you know this is where Nolan’s had his surgeries and you know how I feel about this hospital.  The.  BEST.  An amazing group of surgeons, nurses, physicians, etc., working together to get CHD kids to survive AND thrive.

LCH Awards

I can’t say enough how fortunate I am to live here and have access to such a great facility.  And to think, this hospital hasn’t been around all that long…so the way I see it, they’re just gettin’ started!  I can imagine (and hope for) a future where CHDs don’t exist or total heart repairs are an easy reality, and these things will be lead by the wonderful people at Levine Children’s Hospital!

The Cookie Cult

Guys….seriously.  Who doesn’t like cookies?  Amirite?  If you want the BEST cookies, they’re right here in Charlotte, courtesy of The Cookie Cult (http://www.thecookiecult.com/).

CookieCult

This is a wonderful business started by a local heart mom and the product is beyond addicting.  If you eat one, you’ll want to eat 41, I’m not lying.  Do yourself, and your taste buds a favor: put down those dusty Chips Ahoy, tell the Saulsalitos “see ya later”…this is the cookie you want.

Wells Fargo’s Duke Energy Center

This is one of our newer skyscrapers in Uptown Charlotte, sometimes nicknamed “Voltron”.  It’s actually a cool building and lights up in different colors at night, adding a really cool visual to the city skyline.  From what I understand it uses a lot of new technology to be energy efficient and I hear a lot of people love working there.  Last year I found out you can reach out to them regarding lighting the building for a cause.  I thought, “Oh snap, how awesome would a red and blue building be for CHD Awareness Week?”  So in November I emailed them with some facts about CHDs and giving my ask.  After review, they agreed to light up to represent the Heart Warriors on Sunday, February 8th!  Just…look…at…this:

WellsFargoAwareness

I big shout out to Wells Fargo’s Duke Energy Center for doing this…I can’t look at this picture and not feel proud that I live here.  The city looks gorgeous!

 

Charlotte, NC, I love that you love our heart warriors!

 

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

CampLuckConference

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

congenital-heart-legislative-conference-300x300

 

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!

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:

preemptive-love-9781476733654_hr

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/

_______________________________________________________________

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!

32for32 Project Complete!

For the past few weeks my wife and I have been doing these free youtube workouts from Fitness Blender.  They’re pretty awesome and you should check them out.  Anyhow, at the end of every nearly barf-inducing workout it will say “WORKOUT COMPLETE” on the screen and it feels like you made it.  Then you want to eat a whole pizza.  I’m just kidding. 

Anyhow, it feels good to accomplish something, whether it’s a workout, assignment, or a big project.  In my last post I wrote about my 32for32 Project: I was going to do 32 acts of kindness for my 32nd birthday in order to educate people about Congenital Heart Defects.  Well I did it!  PROJECT COMPLETE! 

I worked pretty hard to plan out this project, choosing where I would go and when, and I  did a lot of early legwork to download wish lists and contact the people I needed to contact.  I did a really awesome interview with the Union County Weekly, who posted a wonderful article on their front page, and I even did a quick radio interview with New Life 91.9.  As we got closer to the 14th, the day the project was to start, I ran into some problems…SNOW.

SnowInformer

No, not him.

So the Charlotte area decided to have the most snow in a decade.  A whopping 8 inches.  Now where I’m from in Connecticut, that’s child’s play…but here?  Freakin’ APOCALYPSE.  There’s no snow plows and everyone just gets stuck at home.  Well of course, the snow was still on the ground on Thursday, so I got several messages from my 32for32 stops that they would be closed on Friday.  Great.  I ended up having to be really creative with changing my schedule around to accommodate everything or even add new things.  In the end it all worked out.

So on Friday we decided to brave the snow together as a family (it was pretty melty by then) and hit the ground running.  By Monday the 17th at 4:30pm, I was DONE with the project.  Here’s the list from 1 to 32:

Excited to say the 32 for 32 Project is complete! Here’s the complete rundown of the 32 acts of kindness:

1. Welcome our new neighbors
2. Help a neighbor get her car up her snowy driveway
3. Giving scratch-off tickets to a waitress at a local pizza place (she won $20)
4. Buying someone’s meal at that pizza place
5. Buying a gift certificate from the pizza place and giving it to a cashier at Fami…ly Dollar
6. Bringing food and diapers to With Love From Jesus

7. Bringing donuts to the Hemby Bridge Fire Department to thank them
8. Paying for someone behind me in the drive-thru
9. Bringing fresh cinnamon bread to Union County Health Department Employees
10. Bringing clothes for a tough little heart baby
11. Donating food and other items for the Union County Community Shelter
12. Giving Blood with the Community Blood Center of the Carolinas
13. Going to Great Clips and paying for someone’s haircut
14. Bringing lunch to one of the Producers at church
15. Donating clothes to Goodwill
16. Giving a gift card to a Starbucks barista
17, 18, 19, 20. Cards for some special people
21. A card for a deployed soldier via Operation Gratitude
22. A gift for our mail carrier
23. Reading a story to kindergarteners at Poplin Elementary School
24. Donating formula to H.E.L.P Crisis Pregnancy Center
25. Bringing bagels and CHD Awareness bracelets to nurses at Levine Children’s Hospital
26. Gifts for a new heart baby in the hospital
27. Bringing donuts for the residents of Ronald McDonald House
28. Donating clothes to Crisis Assistance Ministry
29. Donating 20 pounds of items for Second Harvest Food Bank
30. Donating clothes to Second Chance Boutique
31. Bringing pantry items to Matthews HELP Center
32. Bringing 4 dozen balloons to abused & neglected kids at the Children’s Attention Home

WOW.  I was really humbled by the experience.  I met some great people, I hopefully made an impact, and I got to share the news about Congenital Heart Defects! 

 
I have to say that some of the acts of kindness stood out to me.  First was the Union County Community Shelter: I’ve volunteered there before, but this time I noticed 4 or 5 little children there…around 4 or 5 years old or so.  It was sad.  I have to say my family is blessed…we don’t have a lot, but we have food and a roof over our heads, thank God. 
 
The second, of course, is getting to visit the CVICU staff at Levine Children’s Hospital.  They’re like our 2nd family and we love them to death!
 
I never read to a classroom of kids before, and I was a little nervous about reading to kindergarteners.  Oh man, they were awesome.  We read a funny book and they were so well-behaved and polite.  I loved it and I can’t wait to do it again!
 
As I get pictures from the project, I will work on posting them here with some more stories from my experience.  I just want to remind everyone that the 32for32 Project wasn’t about me…it was about my son and all the other heart kids out there who need a voice.  It’s about those agencies who depend upon the kindness of others to help them feed the hungry and clothe the naked.  I want to encourage everyone to try their own Acts of Kindness Project for their birthday…it will really open your eyes to the needs right there in your back yard.  And I am a firm believer that when you give of yourself to do kind things for others, your situations don’t seem half as bad. 
 
Acts-of-Kindness

The 32 for 32 Project

Acts-of-Kindness

It’s hard to believe there are only a few days left in Congenital Heart Defect Awareness Week.  The great part, though, is not only did we have a great week, but that EVERY week for my family is CHD Awareness Week!  I wanted to send off the official CHD Awareness Week (and beyond) with a bang.  My 32nd birthday is coming up on Feb 17th and I wanted to do 32 acts of kindness for my 32nd birthday, in an effort to continue to promote CHD Awareness.  I’m calling it the 32 for 32 Project. 

From Feb 14-17 I will be running all over the Charlotte area doing kind things for others.  These include bringing bagels to the CVICU nurses at Levine Children’s Hospital, bringing donuts to the residents at the Ronald McDonald House, donating clothes to those in need, buying lunch for someone who is hungry, donating food to a food bank, thanking local firefighters, writing letters to special people, reading a book to a local kindergarten class, and the list goes on and on.  With each act that I do, I will leave behind a little card explaining why I’m doing it, and it looks like this:

CHD FLYER

 

I have to say I am VERY excited about it.  Please note, though, that this project isn’t about ME.  It’s about my Nolan and ALL the heart kids in the Charlotte area and beyond.  The whole point of this is to go above and beyond myself not to just help people who are hurting, but to make people aware of CHDs.  So far, the response has been overwhelming.  This past Friday an article appeared in our local free newspaper, the Union County Weekly about the 32 for 32 project…you can read it here: http://www.unioncountyweekly.com/news/2014/02/kindness-in-the-name-of-nolan/

I’ve also been contacted by a local news station, who wants to follow me on one of my excursions either Friday or Monday.  I will also be talking with a local radio station as well.  This is GREAT because it will provide a means for MORE people to hear about CHD Awareness! 

This project has been a lot of work, but it’s been a lot of fun to plan.  I know the 14th thru the 17th are going to be bonkers and I’ll be exhausted when it’s done, but it will be worth every single moment.  My hope is that people will strive to do the same thing, no matter their age.  Maybe you can’t do all those acts for your birthday….so instead, maybe you can do those acts of kindness throughout the year.  That would be awesome: if everyone worked to do nice things for one another, think about how our world will be changed. 

I am going to try my best to tweet all my stops using the hashtag #32for32 (@TeamNolan1) and I also plan to upload photos to Nolan’s facebook page as well (facebook.com/SupportTeamNolan).  I want to send a big thank you to everyone for the support!

20-week Questions

Continuing my posts for Congenital Heart Defect Awareness Week, let’s talk a little bit about pregnancy.  I hope that all pregnant ladies and all dads-t0-be get to read this, because it’s very important.  The 20-week ultrasound is the “big one” and often the one where you get to find out the gender of your baby.  This is also a crucial ultrasound for many people because it’s often where – unfortunately – they find potential heart issues with a baby in utero.  Also unfortunately, some heart conditions are missed during this ultrasound because they don’t always look as closely at the heart as they should.  I know, it’s sad…but it’s true.

So if you know someone who is having a baby, make sure they read this.  If you are having a baby, please read this and remember this.  Here are the questions you should ask at your 20-week ultrasound:

  1. Is the baby’s heart rate normal?  A normal heart rate range is 120-180 beats per minute.
  2. Did you look at the arteries?
  3. Are the heart and stomach in the correct position?
  4. Do you see FOUR chambers in the heart?
  5. Is the heart function normal?

Early detection of a CHD is preferable so you can prepare for the best treatment.  It’s not the best news to get, but trust me…it’s better to be prepared than shocked later.  And if your baby’s heart looks great, then GREAT!  Celebrate!  If not, please know that there great treatment opportunities in place, and advances are made all the time.

Moms, please be sure you ask these questions.  Dads, please be supportive and ask these questions too.  Dads, please be sure you’re actually AT this ultrasound…you need to be involved, healthy baby or not.  As parents, it’s your responsibility to advocate for the best care of your child; so ask those questions and demand they look more closely at the heart…every…single…time.

20 Week