Category Archives: awareness

Team Nolan T-Shirt Fundraiser

Hey Friends,

This post is totally a shameless plug, but I guess it would be crazy of me not to put it on here.  A few years ago we did a fundraiser where we sold Team Nolan t-shirts: they were great quality and everyone loved them. From time to time people have asked when we would consider doing it again, and we felt now is a good time!

This is what it will look like:

TeamNolanShirt2017

The fundraiser will end on June 20th and all orders will print and ship once the sale ends.  Note: we do need to sell a minimum of 11 shirts in order for the company to print and ship them, so every bit of support helps!

We’ll be using the funds from these shirts to help with the little things that always seem to come up: syringes for medications, supplies for school, clothes/shoes, etc.  They don’t seem like much but as you know, sometimes those things pile up.

Here’s the link for where you can get your shirt: Team Nolan Shirt Fundraiser

As always, we are so thankful for your love and support!  You guys are awesome!

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:

Hudson1

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:

3forCHD BrightBlessings2

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

So You Just Got This Flier…

 

So you’ve been going about your week and somewhere along the way you received an act of kindness and this flier…

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That means you received an act of kindness as part of the 3forCHD Project!  February 7-14 is Congenital Heart Defect Awareness Week and around the world people are doing 3 acts of kindness in order to raise awareness.

I really appreciate you taking the time to visit this blog and learn about my son Nolan’s story, which is just an example of what many kids with CHDs go through.  I encourage you to take a little bit of time and read through the posts on here.

Since it’s CHD Awareness Week, I want to also provide some opportunities for you to help spread the word:

  1.  Tell others about those facts that are on the back of your card.  CHDs are the most common birth defect.  There is no cure.
  2. Make some noise!  You can write to your mayor, governor, city council, or even local lawmaker to tell them about the act of kindness you received and that you want to make them aware of Congenital Heart Defects!  The reality is that we still don’t know the cause of CHDs and it’s going to take a lot of research and money to find that out.  Call, write, and email to your representative and ask them to support Congenital Heart Defect research.
  3. Learn more facts!  The Pediatric Congenital Heart Association has a great CHD fact sheet: read it here.
  4. Send your prayers and kind thoughts: there are lots of kids like Nolan out there who need all the prayers and positive thoughts they can get.  They are going through lots of scary things and so are their families.  They can use your support, even if they don’t know you’re sending it!
  5. Support a cause, if you wish.  There are two great ways to support organizations that help kids with congenital heart defects.  The first is Levine Children’s Hospital, where most local heart kids receive their life-saving care.  If you ever want to donate to them you can do so here.  Another great organization close to our heart is Camp LUCK, which provides support for kids and families as well as a medically-supervised overnight camp for kids with CHDs.  They do AMAZING work and you can learn more about them here.
  6. Continue to follow Nolan’s story.  I update this blog pretty regularly and also try to post pictures and videos on his Facebook page.  Nolan is one tough kid and he has been through so much and is full of lots of love and laughs.  He will be going in for his third open-heart surgery this spring: if you could send him some love through kind messages in the comments section on this blog or on Facebook, that would be awesome!

Thanks again for taking the time to visit.  I hope you’ve learned something about CHDs today and I hope you know that not only is it important to me, but it affects thousands of kids and families across the country.  You can keep making a difference by helping us make people more aware.

I also hope that the 3forCHD project encourages you to go do your own acts of kindness: imagine what a difference we could make!

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!

3forchd-banner1

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?

 

 

Risk: More Than That Board Game You Never Played

Aside from this blog, I really enjoy sharing my story with others. Over the last couple years I’ve been able to speak to other heart parents and healthcare workers about my journey with Nolan. I love helping people know they’re not alone or open others’ eyes to congenital heart defects. Recently I had a chance to take my story a little more “mainstream”. There’s an amazing program for creatives here in Charlotte called CreativeMornings/Charlotte. They set up free monthly speaking engagements where they bring in speakers to inspire others with their stories. It’s really awesome stuff. A couple weeks ago, CreativeMornings/Charlotte was holding an event during a local weekend art showcase called BOOM Charlotte. For this “Audience Takes the Stage” event, 6 people were chosen to speak for about 7 minutes on the subject of risk. I was really excited to be chosen as one of those people! So in the morning we gathered in the Plaza-Midwood neighborhood here in Charlotte and we all told our stories to an audience who mostly never met us before:

It was a really great time! I got to hear stories of hope, dedication, and perseverance…all tied to risk. I enjoyed my time up there on stage…but 7 minutes FLIES by! I talked about how my journey with Nolan inspired me to write this blog, because discovering your child has a CHD is like stepping into the unknown, and I wanted to help others as they make that same journey. That’s a lot to pack into 7 minutes. So now that I have no time limit, I want to share with you some of the things I spoke about and how they can apply to you as a heart parent.  You see, it’s not easy to share your story…but if we can do so, we should.  The reward is greater than the risk and you can change the course of your life, the lives of others, and even the future of CHD research.  So check it out:

The Risk of Being Vulnerable
This was one of the big risks when it came to writing this blog. There wasn’t a lot out there at the time for heart dads by heart dads. But the bigger thing was not just telling a story, it was being open and honest about it. Talking about the times I was scared, upset, frustrated…even talking about tearful moments. Last time I checked, most guys aren’t signing up to talk about that kind of stuff. So I choose to open up as best I can about it and it’s not easy…many times I’d prefer to tell highlights of the story. Being vulnerable is a big risk because there’s a chance – believe it or not – that you reading this might think that I don’t have things together at all. And – spoiler alert – I don’t have it all together. No one’s perfect and life is a process! When you choose to share your heart journey with others, you’re also making yourself vulnerable…but if you take the risk, it will pay off!
The Risk of Facing the Past
Being a heart parent is like climbing a very steep mountain. You work very hard just to move forward and hopefully leave all that old mess behind. When you choose to share your story with others, whether personally or through something like advocacy, it causes you to turn around and face those things you’ve put behind you. The surgeries, the recovery, the hospital smells and sounds. All of it. And if you’ve done it, you know that sometimes it really hurts…like re-opening an old wound. Sometimes we don’t want to talk about it, and I understand that feeling. But when you choose to do that, I gotta tell you: not only do you help others, but you start to heal yourself in the process.
Why the Risk is Worth It
I know that life sometimes feels like an ocean bashing you up against the rocks, but one day you’ll climb up out of the water and onto those same rocks. And you can choose to walk away or withdraw or you can choose to be a lighthouse for others. I hope you choose to use your story to be a light. Tell your story. Whether you help one or help a hundred, it’s always worth it in the end. Is it easy? Not at all. But you can be a fire and every fire starts with a match and every match is lit by friction. So how do you get involved?

· Write a blog!

· Advocate for CHD research! Visit PCHA to learn more.

· Get involved with local groups such as Camp LUCK (if you’re in Charlotte area), Mended Little Hearts, or Sisters by Heart.

· Join the tons of CHD facebook groups and talk with others. They need you!

Sharing your story is like stepping into the great unknown…it can be scary sometimes…but remember when you started this journey? You were stepping into the unknown, too, and now you can guide others who are now in the same place.

To learn more about CreativeMornings/Charlotte, visit Charlotte is Creative

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:

2016CHD1

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 I Got This Card…And Now I’m Here…

Hi There!  Did you receive this card recently?

Card

That means you were a recipient of one of my acts of kindness for Congenital Heart Defect Awareness Week!  I really appreciate you taking the time to visit this blog and learn about my son Nolan’s story.  I encourage you to take a little bit of time and read through the posts on here.

Since it’s CHD Awareness Week, I want to also provide some opportunities for you to help spread the word:

  1.  Tell others about those facts that are on the back of your card.  CHDs are the most common birth defect.  There is no cure.
  2. Make some noise!  You can write to your mayor, governor, city council, or even local lawmaker to tell them about the act of kindness you received and that you want to make them aware of Congenital Heart Defects!  The reality is that we still don’t know the cause of CHDs and it’s going to take a lot of research and money to find that out.  Call, write, and email to your representative and ask them to support Congenital Heart Defect research.
  3. Learn more facts!  The Pediatric Congenital Heart Association has a great CHD fact sheet: read it here.
  4. Send your prayers and kind thoughts: there are lots of kids like Nolan out there who need all the prayers and positive thoughts they can get.  They are going through lots of scary things and so are their families.  They can use your support, even if they don’t know you’re sending it!
  5. Support a cause, if you wish.  There are two great ways to support organizations that help kids with congenital heart defects.  The first is Levine Children’s Hospital, where most local heart kids receive their life-saving care.  If you ever want to donate to them you can do so here.  Another great organization close to our heart is Camp LUCK, which provides support for kids and families as well as a medically-supervised overnight camp for kids with CHDs.  They do AMAZING work and you can learn more about them here.
  6. Continue to follow Nolan’s story.  I update this blog pretty regularly and also try to post pictures and videos on his Facebook page.  Nolan is one tough kid and he has been through so much and is full of lots of love and laughs.  He will be going in for his third open-heart surgery this spring: if you could send him some love through kind messages in the comments section on this blog or on Facebook, that would be awesome!

Thanks again for taking the time to visit.  I hope you’ve learned something about CHDs today and I hope you know that not only is it important to me, but it affects thousands of kids and families across the country.  You can keep making a difference by helping us make people more aware.

Finally, I wanted to share a picture of my sweet little Nolan…he’s an amazing boy.  My hero doesn’t wear a cape, he rocks a scar!

NolanCHD2016

So What Do I Pack?

This is the second entry during Congenital Heart Defect Awareness Week (Feb 7-14).


 

I’ve heard this question asked countless times, whether in person or on social media: what do I pack for the hospital? I’m going to try and compile a helpful list, but it’s by no means a comprehensive list: everyone is different.  But these are a few helpful things to get you started:

Clothing…for baby and for you

The clothing issue is where most soon-to-be heart parents have questions.  I will say that post-surgery, in my case, clothing isn’t really an option due to a chest incision (or open chest in Nolan’s case) and all the tubes and wires and whatnot.  So you can use things like socks and hats, so gather up a bunch of those and bring them to the hospital.  Let your nurses know about them because they’re often very willing to help by putting on the hats and socks for you.  I know that when Nolan was in the hospital it was always a nice surprise to walk in and see that they’ve put him in some cute little socks at least.  While having your child hooked up to all those pumps and tubes, it might make them seem a little less human, it’s amazing how a tiny pair of fuzzy socks will give that humanity right back.  Now there will come a time where a lot of those tubes and wires come off – and that’s awesome – so you will eventually need some clothes and I recommend the side-snapping variety, which will give access to the baby’s chest with minimal fuss and you can still stick out any wires from it without a problem.  And when you go home you’ll find it makes it easier to dress your baby.  While sometimes these can be tricky to find in stores, you can also find them online.  View what Target has in their inventory by clicking here.  Outfits that button up the middle are good too.  Why not zipper outfits?  Again at some point the’ll come off all the tubes, but there will remain some leads attached to them to monitor heart rate, pulse ox, etc., and the button outfits will allow the leads to stick out…not so much with the zipper.

And for you, don’t forget to pack clothes for you.  You’re there for a long run, especially if you’re not close to home, so pack a couple changes of clothes.  And dress comfy too, no need to impress.  It’s also helpful to bring something long-sleeve in case the hospital is cold to you.

Swag for Your Warrior

Maybe it’s a fun blanket, maybe a stuffed animal, maybe a mobile.  Whatever it is, your heart warrior is still a baby, even though he or she has gone through some major surgery.  Having those cute baby things there is very sweet.  Nolan is a twin and we believed he was used to being in the womb and hearing his brother’s heart beat, and now he was missing it while in the hospital, so we found this giraffe that would play a heartbeat sound.  The curve of the giraffe’s neck and head fit perfectly along the top of his little head, so we’d snuggle it up to him with the heartbeat sound and I really do think it helped keep him calm.  If you’re arsty, bring some craft supplies or pictures and decorate the room.  It’ll help take your mind off things and bring a personal touch to the hospital room.  We decorated Nolan’s room with snowflakes for the holidays and even put up Happy New Year signs, etc.  On those quiet nights when Nolan was just maintaining, it was peaceful for me to draw him a picture or make him a little sign.  It’ll allow you to bring in a little bit of home, so bring pics of the family along too.

Please Don’t Forget About You

This may sound nuts – you’re there for your kid, after all – but self-care is really important during a hospital stay too.  If you like to read, bring a book.  Put music you like on your phone and pack some headphones.  If you have a hobby that isn’t too loud or weird, bring it with you.  There is A LOT of sitting and waiting when you’re in the hospital, and if you don’t practice self-care, you’re going to lose your mind.  So bring things that allow you to be you every now and then.  Got a favorite blanket and/or pillow?  By all means bring those if it’ll make you more comfortable.  Let’s face it: if you’re in a more comfortable state of mind – as best you can be – you’ll be a bit more focused, you’ll pay more attention, and you won’t feel like you’re constantly stuck in a blender.  It’s ok to think about things for yourself.  IT’S OK.  It doesn’t make you a selfish or terrible person, it gives you a shot to be the best parent and advocate that you can be.

Pen and Paper

This is something I wish I did when we were in the hospital initially.  You are going to be bombarded with emotions and with jargon.  Lots and lots of delicious jargon.  And lots of people will come in and out of the room saying this and that and looking at this or that.  And then when the doctors come to do their rounds, they’ll ask if you have any questions and you’ll be like UHHHHHHHHHHHHHHHHHHH.  So bring something to write in, and write down anything you want: what the nurses and doctors said today, any questions you have, any concerns you have, etc.  And break that thing out when it’s time for rounds.  This will be so worth the effort, trust me.  It will help you be a much more engaged parent.  Maybe you want to journal your experience: write down how each day went and document your Warrior’s progress. I bet that would be something awesome to keep and show them when they’re older!

Don’t Forget the Details

There are other small things that you’ll need to remember or prepare for.  Did you pack your phone charger?  You definitely won’t want to forget that.  What about those clothes you packed?  You don’t want to get funky, so check and see if there’s a washer and dryer on-site that you can use and whether you need to bring your own detergent.  If you’re staying at a Ronald McDonald house or someplace similar, you’ll want to check into that too.  Don’t forget toiletries too!  That goes back to the thing about not being funky.

And how about that hospital food?  We got meal tickets everyday, which was awesome…but after 2 months of daily stops there, it started getting a little mundane, no offense to the hospital.  So look into places to eat in the area: somewhere you can pop in, grab some grub, and get back without losing too much time.  Even better: find if there’s a couple places that will deliver to the hospital.

Have a plan for visitors too.  Some ICUs have restrictions and that makes it easy, but if you don’t want a billion people, including third cousin Ray-Ray and aunt Junebug, then you need to have a plan.  Tell people early, and bluntly, about your plan.  If people are supper offended, let them be…they’ll either get over it or they need to do something else with their time.  Your focus is on you and the health of your child.


I hope this list is a good starting-off point for you as you prepare to enter the hospital with your new heart warrior.  It’s never going to be an easy trip, so I hope this list makes packing a little easier for you.  If you have more questions about what to pack, please feel free to leave a comment: maybe there’s something I forgot to include!

suitcase

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!

friend_heart

Flipping the Ratio

About a month and some change ago I had the opportunity to hear a really challenging message that I feel is practical for anyone.  Do you remember a time in your life when someone said something to you that was extremely discouraging?  Isn’t it amazing how well and how clearly you remember those words?  One example that immediately comes to my mind happened when I was in the 10th grade.  I had a geometry class with a particularly bonkers teacher who I couldn’t follow to save the life of me.  Of course, in the first marking period I didn’t do so well grade-wise, not to mention that math is so not my strong suit.  So I remember it being report card night and my mom visiting with this nutcase of a teacher.  My mom and I both mentioned the possibility of switching me into a different class that would have a better pace for me to follow.  What the teacher said next just blew my mind: “If you switch out of my class you will amount to nothing.”  Ouch.  Now obviously this man was a lunatic and I was in several high-level classes in high school…I’m not a complete moron, I just stink at math.  But those words stung pretty badly.  Now, I was able to indeed switch into a different class where I could understand the work and I finished geometry that year with A’s.  Boom.  Fast-forward and I have a Master’s Degree and I’m doing well for myself.  KA-BOOM.  But man, I can’t lie and say those words didn’t bother me or fade for a long time.  Luckily it just gave me something to prove.  For others, though, discouraging words really hurt and they drag people into a scary abyss.

The Gottman Institute did some research surrounding encouragement.  Basically their research found that, on average, for every 1 word of encouragement someone receives in life, they will receive 6 words of discouragement.  You read that correctly…1 good, 6 bad.  SIX!  Now stretch that out 20, 30, 40 years and you’ve got a grim picture, don’t you?  But this is the sad reality for some people.  We live in a judgy world sometimes; people cut others down because it just makes them feel a little better about themselves.  When I heard about this study it really stuck with me on a variety of levels: as a dad, as a friend, as a husband, as a boss…am I really being an encourager?

Heart Dads, it isn’t enough to just get your kid through the scary medical stuff…get them through life in one piece by giving more words of encouragement to build them up.  Let the medical team build them up physically while you build them up mentally and emotionally.  But beyond our kids, are there opportunities where you can encourage other families?  Like really encourage them.  What about your spouse?  What about your staff at work?  Learn to ask “How are you doing” instead of “What are you doing.”  What about your kids’ medical team?  They see some scary things too…

And speaking of medical personnel, I want to talk to you for a minute.  Doctors, nurses, Nurse Practitioners, CNAs, ultrasound techs, receptionists, etc.  You can make a massive impact on a family’s health and well-being by being more encouraging.  I know you’re busy, so are we.  But I want to challenge each and every one of you: the next time a family is in your clinic, even if just for a routine check-up, take 30 seconds to look them in the eye and acknowledge the work they’re doing to make the best life possible for their child.  A simple, “Hey, I just want you to know you’re doing a great job at this…it’s hard work, but we’re in this together and you’re doing awesome.”  You wanna inject some energy into a tired family? That’s how you do it.  Try it…I beg of you…if will work.

The encouragement-to-discouragement ratio is a bad one right now.  So how about we flip that around and give more words of encouragement?  I mean think about how amazing it would be if parents, who have been through some rough stuff, are the ones who lead the way in encouragement.  How amazing would that be?  Together we can make the world a better place, so let’s be thinking about what we say to one another!

Encouragemen