So you’ve been going about your week and somewhere along the way you received an act of kindness and this flier…
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:
- Tell others about those facts that are on the back of your card. CHDs are the most common birth defect. There is no cure.
- 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.
- Learn more facts! The Pediatric Congenital Heart Association has a great CHD fact sheet: read it here.
- 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!
- 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.
- 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!
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:
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.
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.
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!
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:
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.
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.
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
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.
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
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
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!