I have the immense honor of partnering with the Pediatric Congenital Heart Association (PCHA) on some guest blogs for their website. If you’re not familiar with PCHA, they’re a fantastic organization that works collaboratively with patients, families, providers, and even legislators to provide education, research, and advocacy around CHDs. You can visit their website here.
I was asked recently to blog about the experience of finding out about Nolan’s heart defect and how things have progressed since. As I always do, I thought of (and scrapped) several different thoughts and ideas. In the end, what I couldn’t shake was this thought that sometimes – up close – being a Heart Dad is kinda a mess. Like a Claude Monet painting. And the more I think about it, when you step back and re-assess, it can really look beautiful. So I took that idea and I ran with it, writing a post called “All Life’s Moments are Brushstrokes.”
You can read that post at this link: All Life’s Moments are Brushstrokes
Thanks again to PCHA for everything you do and for including me in it!
Hello readers! February 7-14 is Congenital Heart Defect Awareness Week. This is the time (though it’s pretty much year-round for me) where we get everyone’s attention by sharing facts about CHDs, which have no cure. The Pediatric Congenital Heart Association has done a fantastic job creating a graphic that sums up the impact of CHDs:
CHDs are devastating for families. Painful and frightening for kids. Expensive to treat. Grossly underfunded in terms of research.
Please share these facts with the people you know and with the people you don’t know, because everyone needs to know…the more support we get for CHD research, the better chance we have of eliminating it one day.
So this week, give your Heart Kid an extra tight hug and be grateful for them and all that their experiences have taught you. For those who mourn this week because CHDs have taken your loved ones, my heart goes out to you and breaks for you. If there’s one more thing I ask, is that this week you do something kind for someone else, in the name of the kids fighting Heart Defects and those who have passed on.
Well November is finally here: the time of year where the temperature starts to drop a bit, the Halloween decorations get put away, and kids start to develop the all-to-familiar tickle in the backs of their throats which send us Heart Parents into a small panic. But most importantly, it’s the month where everyone makes an effort to stop and give thanks. While I agree that we should be thankful all the time (in fact, I encourage it), I was hoping to share a story with you that’ll help you remember to be thankful this month and beyond.
So if you were to ever meet Nolan, you’ll learn that when he gets into something he really gets into something. Whether it’s the alphabet (forwards and backwards), numbers (counting to 100 by 10s!) or the musical stylings of Laurie Berkner or They Might Be Giants, he can get kinda obsessed. Well several months ago he was watching an episode of Paw Patrol, one of his fav shows, and this particular episode was about a family of owls. Now this sounds like no big deal…but something about the owls struck a chord with Nolan and he went owl crazy! But oh no no…this was not merely, “Hey Dad, can we watch the owl one again?” No, friends…this became Nolan calling himself an owl and hooting…
Oh sweet baby Jesus, the hooting…
When I came home from work: “Hey Nolan!”…”HOOOOOOT HOOOOOT!”
Going to bed: “Goodnight Nolan.”….”hoot”
And that became hooting along to music in the car, hooting to random people, and hooting to his teachers at school.
I thought that surely this was a phase, but in true Heart Warrior form, he was not lettin’ this one go. And the hooting started to make me a little crazy, to be honest. I tried all sorts of things: “Nolan, Daddy is not an owl”…”Nolan, Daddy doesn’t speak owl”….”Nolan, please STOOOOOP”.
Well….he still hoots haha but not as much. And, as you can imagine, he wanted to be an owl for halloween. My wife, being awesome like she is, made him some really awesome owl wings and we found him an owl hat and some cute fake glasses that he loved:
Is that kid cute or what? And it also gave him an opportunity to hoot all he wanted while trick or treating…it was pretty awesome for everyone involved. But it was something that happened after halloween that helped me be more accepting of the whole owl thing…
It was a Thursday evening and I was coming back from kickboxing class. It was sparring night so I was feeling beat up (literally) and I had to stop by the grocery store before coming back home. Our house is on an alley and I parked in the back…instead of going through the yard I decided to go down the alley and go through the front door. As I reached the end of the alley, just around the corner of our house, I saw what I thought was a woman with long hair standing on the sidewalk in front of our house. I stopped and peered around the corner to discover that I actually wasn’t a person…it was a massive, real-life owl sitting on our mailbox! WHOA. So I crept up a little closer asking myself if I was really seeing an owl or if I took too many punches to the head. Sure enough it’s big ol’ owl head swiveled around and looked at me and then it flew off to the neighbor’s mailbox. I don’t know why, but my heart was pounding…I went inside and told my wife to come out quick to see the owl. Shortly after it flew away into the night. The crazy thing is our neighborhood doesn’t have any trees that are owl-friendly, so this guy had to come a bit out of his way to hang out on our mailbox. Crazy!
This sounds corny, but in my heart it almost felt like that owl came by to visit his goofy little friend Nolan…or at least that’s how I liked to view it. I was really excited about the owl…and then I became ok with Nolan wanting to be his own little funny owl self. It really made me think of a fantastic quote by Charles Spurgeon:
“We are too prone to engrave our trials in marble and write our blessings in sand.”
In our life as heart parents there is a lot to be upset about, a lot to be frustrated about, a lot to lose hope about. And it’s ok to feel that way…but I do think we all too often choose to take those feelings and put them in a permanent place in our lives while all the good things, the small victories, the smiles, are written in sand, only to be washed away while the harsh feelings remain.
So yeah, the hooting can sometimes get to be too much…but honestly over time he’s doing it a little less and less. And he makes a really cute owl…and you know what? Owls are kinda awesome. And if he wants to be an owl, Nolan can be an owl. Know why? Because I need to learn to see the things I’m thankful for…the fact I can hold my little owl’s hand and take him trick or treating. It’s a reminder- as always – of how far he’s come…and a reminder that I need to engrave my blessings in marble…not just my trials.
I hope this brings you a little bit of encouragement this Thanksgiving season!
Also (and this is TOTALLY coincidence), our good friends at the Pediatric Congenital Heart Association have started a new campaign called Be #CHDWise, which features…you guessed it….an OWL named Echo:
You can get your own Echo the Owl or a dope t-shirt, and read more about the campaign on their website. Be sure to also follow the hash tag #CHDWise on social media so you can help people “Give a HOOT about CHD!”
(PCHA, you guys are awesome!)
This is the 4th entry in my series on Fatherhood this month. Enjoy!
Hey everyone! Father’s Day is almost here! I’ve had the great fortune of having two really wonderful groups reach out to me regarding guest blogging on their sites and I’ve really enjoyed the experience so far. I’ve featured both of these sites before and both have published a post of mine in time for Father’s Day and I wanted to share them with you:
The Mighty reached out to me again and wanted to publish one of my previously-written blogs from this site. Of course I agreed, hoping it would be able to provide some help to people. I encourage you to take the time and read it again and learn about some self-care techniques…and then share, of course! The article is titled “To the Stressed Dad Worrying About His Child’s Health”:
Pediatric Congenital Heart Association
I’ve had a blast working with PCHA as a blogger and an advocate for CHD research. They work so hard to push for more research and a better future for our kids and I really encourage you to get involved. Recently they published a guest blog post of mine that has shown to be extremely popular so far and I wanted to share it with you. It’s titled “5 Things You Shouldn’t Say to a Heart Dad”:
Have a great Father’s Day!
Hey friends! This post is to update you on some really exciting news. I was asked by the Pediatric Congenital Heart Association to volunteer as a guest blogger! I hope they know what they’re getting into….just kidding. It’s a great honor for me to join in the great work PCHA is doing. My goal is to try and guest blog on their site once a month and I will link to their posts here on the blog. This is a fantastic organization that can empower you to get more involved in the heart community. So without further ado, please visit my guest post on the PCHA website and stick around to read some other content and blog posts, you won’t regret it!