Category Archives: life

It’s Not a Contest

My friends, this is a challenging post because it’s something I’ve struggled with from time to time and something I’ve seen/heard from others, too (not to judge).

I remember the day pretty clearly: someone I worked with at the time came into my office to talk something work-related. As I was looking up what she needed, she asked how everything was going at home with Nolan. I was a bit taken aback at first, because we were months into this incredibly difficult journey and it was the first time she’d ever asked about him. At this point in his life, it was a STRUGGLE: he was on a feeding tube, vomiting consistently throughout the day, and we were up all hours of the night giving meds and trying to sort out the obnoxiously-beeping feeding pump. I wasn’t sleeping, I was fried, and it took everything in my power just to get to work, much less complete my tasks. Of course, I didn’t go into all that, I just talked about appointments, feeds, meds, therapies, etc. Then she said something along the lines of, “It just reminds me of when I had to take my daughter back to the hospital for a few days for jaundice and I just couldn’t handle it,” and then she started to cry. Outwardly I remained passive. My brain, however, was like:

The nerve! THE NERVE! To quote the Grinch, “The unmitigated GAUL!” I was flooded with this sense of anger, like “How dare she compare jaundice to what my son has been through! His chest was OPEN…he was on a VENT…at one point he CODED, for god’s sake! And you’re CRYING?!”

Since then, I’ve realized that this tends to happen to me a lot…”you don’t know what tired is, bruh” or “that’s not scary, this is scary.” It’s like I have some sort of measuring stick that I use to compare people’s struggles against mine, and I also determine whether those are valid or not. It’s like a contest in which I win because my struggles are worse than yours. Yikes. That’s not cool, to be honest. Do you do it, too?

Now before I go on, I need to establish that this doesn’t make you some kind of failed or broken person. In fact, I’ve found that these feelings are at their height when I’m feeling compassion fatigue (read more on Compassion Fatigue here.)

But I also need to say this here, and say it loud: our struggles/traumas/challenges are not a contest! Because if it were a contest, what do you win? Is there some prize? No, because guess what – your struggle is still there. And when you dig deeper, there will almost always be someone with an even worse situation than you. Ok so open-heart surgeries are way more difficult than some jaundice…but what about the kids coming home in wheelchairs? Or with a trach? Or what about the families who lost their child? When I think of it that way, I feel terrible….because while I’m raining down the my-trauma-is-worse-than-yours attitude on others, I realize that others can do that do me…and if they did, how would that make me feel? Pretty lousy.

So what then?

Friends, I feel like the power we have over this kind of thinking is to use empathy. I write a lot about empathy because I think it’s critical to changing the world and helping our own mental health in the process (you can read more about it here). Oftentimes empathy gets confused with sympathy, but they’re different. Sympathy is that natural feeling you get when you see someone struggle or you hear some sad news. That’s the response we get from people when they hear how difficult our journey is…but it’s also the source of this “contest” we tend to hold with others we deem as not struggling as much as us. We want sympathy, but won’t give it. So why empathy, then? Empathy is understanding what someone is going through because you’ve been through it, or simply putting yourself in someone’s shoes to understand.

You see, we want people to do this for us, but why won’t we do it for others? Think about when you found out about your kid’s CHD: if you’re like me, you knew NOTHING about CHDs before that…it was the furthest thing from your mind. Your struggles, up to that point, were the most difficult things for you. And now that you’re climbing a different mountain, we sometimes don’t want to extend the same grace to the people who were in the same spot as us. So before I judge, maybe I need to stop and empathize with that person and realize that while our experiences aren’t exactly the same, I shouldn’t invalidate their stress over their struggles. Rather I need to recognize that I’ve been there, too, and I should seek to understand. I need to do better about saying things like, “Wow that sounds really difficult and it’s scary when are kids go through tough times, right?” Give it a try and see how that feels, I know I will.

The life we lead is challenging, there’s no doubt about it. But it’s also not a contest. When you’re stressed, scared, tired, at the end of your rope, don’t lash out at people even though it may temporarily feel good to do so. Rather, practice some empathy and work towards building a community of people who care for each other, no matter what you’re going through.

All Life’s Moments are Brushstrokes (a PCHA Guest Blog)

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!

The Life of a Heart Parent…as Told by Memes

If you’ve read this blog for more than, like 5 minutes, you’ll know that I absolutely love memes. They’re a hilarious way to capture those random moments in life and time. I’m a big believer in laughter and while the life of a Heart Parent isn’t an easy one, I think it’s good for us to find the humor when we can. I’m not at all making light of our situation, but I do find that whenever I see something online that resonates deeply with me as a Heart Dad, that I tend to find it even more uplifting. So Heart Parents, I see you…you’re doing a great job. This is for you: the life of a Heart Parent…as Told by memes…


Hospital Life

SleepingInChairMeme

The STRUGGLE of trying to get remotely comfy on those skin-eating vinyl monstrosities! And, of course, when your kid finally falls asleep, you decide you can finally shift just an inch and then the chair/couch in the room releases one of those vinyl fart noises that could wake up a bear.

PulseOx Meme

I’ve actually gotten pretty good at silencing those machines. But it never fails that once you and your heart kid settle down, the machine is like, “Let me play you the song of my people!”

Calculationsmeme

Maybe I’m not too sharp, but there were lots of times I’ve listened in on physician rounds and thought, “Was that even English?”

MJ Zombie

BRUH. Don’t even get me started.


When You Finally Get Home

LisaSimpsonMeme

When you finally bring your Heart Baby home from the hospital and everyone and all their homies wanna come to your house, but you’re not having it, because infections are real and scary.

When the Pharmacy (once again) Doesn’t Have the Meds Right

TD Jakes

How many times do I have to repeat myself?!

When the Bills Start Arriving

Bankruptcy

It is insaaaaaane how much healthcare costs!

Appointments…Appointments Everywhere

nervous appointment

To be honest, they’re all pretty nerve-wracking.

And Then the Cardiology Appointment Goes Well!

AwwwYeah

“See you in 6 months” never sounded so beautiful.


And You Just Keep Going

NoSleep

Sleep?! What is that?

Flu Season is Hermit Season

SocialNetwork

Sometimes it Feels Like People Just Don’t Get It

Boulder Guy

In the End, This is What It’s All About

MomoaMeme

We love our kiddos! They’ve been through so much and they do it with such bravery: whenever they accomplish anything, it’s a huge moment to celebrate and tackle them with all the hugs!

Keep being awesome, Heart Families!

Love At The End of The World

Isn’t it amazing how music can capture a feeling or a point in time during your life? It can motivate, soothe, energize, create memories, create joy. I think it’s one of the most powerful things we have in our world – because it speaks to us in different ways and we tend to be very unique in what we like and how it moves us. I’m a huge music fan: I love to listen to it, obviously, but I also love going to concerts and discovering new things out there in the music world. My car is practically overrun with all my music CDs – and yes, I prefer my music experience to be a tactile one, don’t @ me. It’s important to me. “What does this have to do with CHDs?” you might be thinking. Well I want to talk to you specifically about a song that has resonated a lot with me lately.

Let me introduce you to John Mark McMillan:

JMM

This dude is an incredible musician and songwriter. You most likely know him as the guy who wrote “How He Loves,” but he has a ton of other fantastic songs. The funny thing is my discovery of his music really coincided with the beginning of my journey as a Heart Dad. I can speak to several times during Nolan’s recoveries – or just life in general – where his songs like “Holy Ghost” or “Mercury & Lightning” seem to perfectly capture my current feels/hopes/struggles. Seriously, he’s a fantastic songwriter and you need to check him out. But this isn’t just a mere shoutout as a fan, I want to focus on a song off his album Borderland, which is called “Love At The End.”

Borderland

Now I’m not gonna speak for Mr. McMillan about what this song is actually about (feel free to hit me up if I’m totally off-base, man!), but I can speak to what it means to me. Specifically I want to talk about the lyrics that say, “I’m on the brink / But I found love at the end of the world.”

This album is full of amazing songs and I love this one, too, but lately that part of the song has really stuck out to me. As of this post, it’s Congenital Heart Defect Awareness Week, where I – and others like me – do our best to make the world aware of CHDs and their impact on the lives of children, adults, and parents. One of the things that comes along with CHD Week – at least for me – is a lot of trips down memory lane, which can be hard. You tend to be reminded how it felt when you found out your son would be born with half a heart, or how he looked post-surgery with his chest open, hooked up to all those tubes and wires. You remember all those struggles and how scared it all made you feel.

It feels almost like the end of the world. You face a thing that shouldn’t be: kids shouldn’t get sick, they should have surgeries, they shouldn’t be in pain. But here you are. You’re thrust into the medical word with all its bells and beeps and jargon and acronyms, you’re doing your best to make ends meet, to afford the meds, to make one more call to the insurance company. All this while life continues to move along without you – you might lose friends, might lose family, might lose opportunities. The end of the world, as you previously knew it.

John Mark McMillan’s song serves as a reminder that while we’ve seemingly hit the end of the world, and we’re scratching and clawing our way into some sense or normalcy, a tremendous amount of love lives there: your Heart Kid. I love all my kids, I’m their dad and proud of it, and I love them all equally. The amazing thing about Nolan being born, though, was that his experience seemed to unlocked some kind of other level of love that I didn’t know what there. Have you felt the same way? I hope you have! I feel like throughout this crazy, difficult journey, I feel like I’ve learned to love bigger, if that makes any sense.

That makes every hug even more epic, every accomplishment one to really celebrate, and every moment a valuable one. In spite of all the horrific things I’ve seen my son go through, I still managed to find love there, at the end of the world.

I know that this life is a hard one for us and our kids and that you’re out there doing your best – and shout out to you for that – but when it really feels like you’re about to lose it, maybe remember how you found love at the end of the world. It’ll show you that you are indeed strong, capable, and you’re not done yet. Stay strong, Heart Fam, and enjoy John Mark McMillan’s “Love At The End”:

Wonder

I wake up pretty early for work – just after 5am, usually – and let’s face it, it stinks. No one likes getting up while it’s still dark out and leaving for work while it’s still dark out. For me, however, I got a little bit of perspective over the last few months while leaving for work and – if you’ve read this blog at all – you know that perspective in this journey is an important, and helpful, thing. You see, I used to just wake up, shower, get dressed, let the dog out, give Nolan his morning meds, pack my lunch, make coffee, and then head out to the car and off to work. Boom. Same thing every morning.

The last few months, though, I’ve come to give a little bit of appreciation to leaving for work while it’s still dark due to one thing: the view. While leaving for work one day I just happened to look up and – WOW – it was like the sky was darker than usual and the stars were brighter. And it was incredibly beautiful. So then it became a morning thing: go out the front door, lock it, then look up. The moon would shine, you can pick out a constellation or two, maybe a planet like Venus nice and bright in the morning sky. And call me a nerd if you want, but it’s almost breathtaking.

You see, where I grew up there was a lot of light everywhere, so seeing the stars wasn’t really much of a thing. You can see some, but it also wasn’t the kinda neighborhood where you hung around outside looking up at the sky. Over time, you take that kind of thing for granted. Yeah, there’s stars and a moon, they’re up there all the time, big deal. I live in the ‘burbs now and while there’s still quite a bit of light, I can see the stars much better now than when I was younger, and now I find myself in awe. How they can be so far away and still seem right there, how we”ll see more of the moon’s surface in our life than our own planet’s (when you think about it). I think about how people navigated using the stars long, long ago, and how amazing it is that – as far as we know – we’re the only living beings out there. Crazy, right?

For Christmas, the kids got a telescope as a family gift and I think I was the most excited to use it. I’ve looked at the moon with it several times (most recently the blood moon eclipse, which was amazing), but the first time we set it up and I finally got the moon in view, it was really breathtaking. Even the kids were amazed, and they don’t seem amazed by anything sometimes. The stars, the moon, space…it just leaves me with this amazing sense of wonder. What else is out there? What will we find out in my lifetime? What’s it like to be in space?

starrysky

There’s something about that sense of wonder that I find – I dunno – grounding, in a way. When I look up in the morning sky and see those stars as I’m walking to my car, there’s that feeling of being so small in this great huge universe. And that’s actually ok with me, it doesn’t bother or intimidate me at all. It tells me there’s so much more to know and to learn. And that I’m lucky to be alive, on Earth, to see what discoveries happen next. That’s amazing!

Then I get to thinking about being a Heart Dad and I realize that this life is often full of wonder, too, if you stop and think about it. The other day I was giving Nolan his evening meds: he’s sound asleep by this point and I was just kind of watching him sleep and breathe slowly (you parents know all about the “you still alive?” nighttime check). And then it hit me, even though I already knew it – this kid has half a heart. HALF. That’s wild…and it, like, still pretty much functions. Yes, the plumbing is different right now and it’s nowhere near perfect, but whoa. That’s pretty amazing. What does it feel like to have half a heart? I don’t know. I don’t think Nolan can describe it to me at this point, and either way he doesn’t really have much of a reference point for what a “normal” heart feels like. When Nolan gets to running around and playing, or when he’s at the trampoline park jumping around and climbing, you can sometimes forget about his HLHS. And yeah, that gives me a sense of wonder, too. Yes, CHD is stressful and scary, but wow is it amazing what this kid can do and how his body works.

Look at our own bodies! Before our heart warriors, I’m certain we really didn’t think much about our own physiology. We didn’t think about heartbeats or circulation or the intricacies of the human body. At least, I didn’t. But man, now that we’re kinda immersed in it, it’s pretty amazing right? It’s amazing how far medicine and healthcare has come. And it’s amazing to see where it will go.

I just think sometimes we get too caught up in everything…life hits you hard and fast…and we don’t take time to dwell in wonder about something. It’s a lot like me growing up, not seeing much of the stars and not bothering to really acknowledge that they were there. But now I can take the time and I have the ability to see them and be amazed. Often we let fears and anxieties of the CHD life consume us. I’m not saying it’s wrong to be afraid, or that it’s wrong to be anxious. I understand and accept that those things will always be there and they hit me, too. But I wonder what it would be like if every once in awhile we stop, open our eyes and our minds, and just dwell in the wonder that is our heart warrior….or the wonder of the human body, or the ocean, or space, or animals, or nature, or whatever. I’m willing to bet that in those moments when it feels like life is spinning just a bit (or a lot) out of control, letting wonder keep you grounded with help you a great deal. I know it does for me. So maybe get out there early in the morning or at night, take a few deep breaths, and look up. The stars are out there waiting.

 

Six Years Old!

This past December, Grant and Nolan turned the big number six. I can’t believe they’re already six, I can’t believe how much they’ve grown, and I can’t believe how much they’ve accomplished this year:

twinsbday1

These two kiddos went from NICU babies to big boys starting Kindergarten. Nolan has been making some really wonderful progress with his eating, in fact, we really only use the g-tube right now for medications while he’s asleep. That’s amazing! Grant has started karate and is really enjoying that. I really love these two kiddos: they can go from sweet to crazy in the blink of an eye, but at the end of the day they bring us lots of joy and laughter.

We celebrated their birthday at home with some presents and fun. Each kiddo got a little cake that was decorated with their favorite animal. Nolan had owls and Grant had sloths (I told you, they’re a trip).

twinsbday2

Every birthday is a big source of celebration in our home, especially for Nolan…every year is a gift! Love you boys!

Grin Kids

Happy New Year, everyone! I hope 2019 brings you an amazing year! I have a few 2018 posts to catch up on, sorry for being so late on these…away we go!


I’ve been living in the Charlotte, NC area for almost 14 years now (wow, time flies!) and as far back as I can remember, one of the morning radio shows that has always been popular has been the Ace & TJ Show.

acetj

These guys have been in the business for quite some time and they’re hilarious. On top of being really funny and entertaining, they have a really great heart as well. Every year they do something called Breaking & Entering Christmas, where people can nominate families who are having a really tough time during the holidays, and they’ll go into their home while no one is there, furnish the place, leave gifts, decorate for the holiday, etc., and then leave without a trace, providing an amazing Christmas for a family in need.  It’s SO cool. They also run a non-profit called Ace & TJ’s Grin Kids, which provides a magical, all-expenses paid trip to Disney World for medically fragile kids between the ages of 5-12…and they’ve been doing it for 19 years!

grin-kids-logo

This was the first year Nolan was old enough to qualify, so early in the year I filled out the application and got his cardiologist for fill out his portion. Then in the summer I got the phone call: NOLAN WAS SELECTED AS ONE OF THE GRIN KIDS FOR 2018!!!

I was SO excited! The kids have never been to Disney, and I probably hadn’t been to Disney since I was near the kids’ age. The twins have never been on a plane either, so this was going to be a wild experience for them!

The trip wasn’t til October, so I held off from telling them because if I told them in June, they’d be asking every day, “Is Disney tomorrow?” and I just can’t handle that craziness. But 10 weeks out from the trip, I pulled up a video on YouTube about Disney World, Animal Kingdom, and Hollywood Studios. The kids all enjoyed watching it and thought it was cool…then I dropped the news, telling them we’d all be going there together on a special trip! And what a special trip it was:

The Kickoff

When the day finally arrived for our big trip, EVERYONE was really excited. Grin Kids would be covering everything for us, which we’ve never had happen before, so we literally just had to pack and show up. Nolan was ready to go, and especially excited to meet his favorite character, Donald Duck:

gk1

Instead of flying out of the major airport in Charlotte, we flew out of a smaller regional airport nearby: the flight was chartered, so it would be just for the Grin Kids and their families. Plus, we didn’t have to go through all the typical, stressful TSA security checks – just an ID check, some wanding, and then we could walk right on the plane! But before we even did that, the Grin Kids threw everyone a BIG send-off party! It was amazing: we drove up and volunteers loaded up our bags and helped the kids out of the car while I parked; there were mascots there from all our local sports teams, including Nolan’s favorite, Sir Purr:

gk2

We got to meet the other Grin Kids and their families, there were lots of companies and vendors giving out snacks that we could pack with us for our trip (SO helpful!) and other groups like dancers, ice cream trucks, cheerleaders, race cars, and more! The kids all had a really good time and was the perfect way to have fun while waiting for our plane. Once we were ready to board, all the cheerleaders and mascots and guests lined up and each Grin Kid was introduced and got to walk/run the red carpet to lots of cheers and music. It was AWESOME – you should’ve seen Nolan’s face, he was all smiles and giggles. Then we breezed through security and walked onto the plane.

The flight was quick and the kids enjoyed their flight. When we landed, the special fun continued: the local sheriff’s department had motorcycle officers meet our plane and give us a special police escort while we rode our buses to the All Star Sports hotel. The boys REALLY loved that, plus that meant zero traffic for antsy kids!

We arrived at the Disney All Star Sports hotel, where our bags were brought to our rooms for us, and we enjoyed a pizza party and some arcade time before settling in for the night, because the next day we had to get up super early to head to the Magic Kingdom!

Magic Kingd

We got into the park early – before anyone else – so we can take a group picture in front of the castle:

gkgroup2018

Nolan was really excited about all the things he was going to see: was he going to meet characters? Was he going to do some fun rides? He was VERY much looking forward to riding the Dumbo Ride:

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After our group photo we went immediately to a special breakfast just for the Grin Kids….what they didn’t know was there were some special visitors coming: Mickey, Minnie, and Goofy!

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Look how happy that kid is! He got to dance with Minnie, laugh with Goofy, and give Mickey lots of hugs. At one point while meeting him, Mickey told him that he loves him. Luckily someone on the team caught it on video…everyone was a wreck and sobbing. Just a magical moment:

Then it was off to the rides! Our first ride was actually one that Grant Wanted to go on: Splash Mountain. Now we’ve been down this road before: almost every ride has a heart warning, and we were kicking off this trip with a ride that had like a 50 foot drop, so not insignificant. But Nolan was ready, so off we went. We had something called the Genie Pass, which allowed us to the front of the line for every ride and meet-and-greet, so that was SUCH a lifesaver, since waiting in long lines in the heat is not a good mix for Nolan. Anyways we were on the log ride and floating along and I was telling Nolan there would be a big drop, but to be brave and dad would be there with him. There were a few small drops and every time I checked on him and he was all smiles. Then it came time for the big drop and I held him tight…then SPLASH…and we were all cracking up, especially Nolan. He loved it!

We rode lots of rides that day, especially Dumbo, which Nolan totally loved. We did a lot of walking and a lot of smiling and laughing. It was truly…magic, for total lack of a better word. Then we went back to the hotel to get some sleep because the next day was even more fun!

Animal Kingdom

The Animal Kingdom was a really cool park and we kicked off the fun with a safari, which was really, really cool – it was like being in a whole other world! We got the opportunity to record a family interview, which you can see here in all it’s hilarious glory:

The kids were being…well…themselves lol. Nolan is especially funny in this one.

The best part of Animal Kingdom, though? Nolan FINALLY getting the chance to meet the one character he had been waiting this whooooooole time to meet….DONALD DUCK!

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Oh my goodness it was so sweet: Donald saw him waiting and came and took Nolan by the hand, played with his Donald Duck hat, and gave him the biggest hug. Look at the smile on that kid’s face! My heart was just so full. We spent some time meeting other characters and going on some other rides and having lots and lots of fun. Even leaving the parks and returning to our hotel was fun, too, since while we’re at the parks, the Grin Kids volunteers leave special surprises in everyone’s room for them to come back to! Snacks, shirts, water bottles, special cooler bags and cooling towels, toys and activities for the kids. It was so awesome…and they did this every day! The next day would see us visit the final park of the trip:

Hollywood Studios

We kicked off this visit by watching a Monsters Inc show as well as the 3D Muppets show and the kids really enjoyed themselves. Then we rushed off to the special Jedi Academy show: the Grin Kids team helped to secure a spot in the show for Grant and Hudson and I gotta tell you…it was DOPE. They got robes, and lightsabers and even got to battle Darth Vader!

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That was truly memorable and I am really grateful to the Grin Kids team for helping make that a reality!

One of the highlights of Hollywood Studios, and this entire trip really, was the Slinky Dog Coaster. Nolan was dead-set on going on this ride, and it was housed in Toy Story Land, which was PACKED with people…I mean you could barely move. But we used our Genie Pass and finally got to the front of the line and Nolan was practically jumping up and down. By this point Nolan had gone on several rides, including a couple coasters, so my nervousness about it was pretty long gone. This ride was a little faster than previous ones, but I thought Nolan could handle it. So how did he do? Well watch this for yourself:

Pure. Unadulterated. JOY.

That’s my Nolan…with half a heart…totally having the time of his life on a roller coaster. He’s been through so much in his young life, but this smile…it’s just special. This video is like instant happiness, and I’m always watching it. If you ask him today what his fav ride was on this whole trip, he’ll tell you the Slinky Dog Coaster. It was so much fun! before we left Hollywood Studios for the day, Nolan happened to see Donald Duck again and ran into his arms!

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Back to Reality

Finally all the fun had to come to a close…we couldn’t stay in Disney forever and needed to get back to our lives. We gathered in the hotel lobby to take some more group photos and hang out before boarding our buses and getting on our special plane just for us Grin Kids families and volunteers. We arrived back home to NC and everyone helped us with our bags and even gave us pizza for the trip home. We were tired but full of joy to the very furthest reaches of our soul. We had lots of pictures, videos, souvenirs, and especially lots of wonderful memories that will last forever.

I realize we are so very fortunate to have been selected for this trip: it was the opportunity of a lifetime and we could have never been able to see Disney on our own. Ace & TJ’s Grin Kids helped make that a reality and we will forever be grateful. We’ll stay involved with their family and will continue to help pay their kindness forward and share in the joy of future Grin Kids families. Every volunteer on that trip was absolutely AMAZING…trust me, I manage volunteers for a living, so when I say they’re good, they’re GOOD. They did so much for us and I know they worked really hard to make it magical for everyone. Ace & TJ were amazing too, and so was everyone that was part of their radio show…they went everywhere with us and spent time talking to everyone, and that was really special, too.

I think of this trip often and I will for the rest of my life. It was really cool to travel with families who are in a similar situation as you are…there’s no need to explain anything: you just all know what it’s like. And that brings a level of peace to a vacation that you can’t really capture any other way. I’m sure I missed a ton of stuff on this recap, but there was so much fun to be had. Good news is you can view the recap video here and see Nolan and all his buddies having a great time:

 

Last, but certainly not least, I would ask my friends and readers of this blog to please, please, please consider supporting Ace & TJ’s Grin Kids financially, to help make this kind of special trip a reality for many many more years to come. Somewhere in our community is a kid just like Nolan, who has been through so much, who really could use a smile, a hug from a big Mouse, and to be surrounded by people who understand. You can help make that happen here: https://grinkids.org/donate/

Thank you, Ace & TJ for the amazing memories!

Look Up

So in late September/early October I went to Chicago for a work conference. I brought my staff with me and I think everyone was looking forward to it. I’d never been to Chicago before, so if I had any free time during the conference, I was gonna spend it exploring the city! Of course, I drank lots and lots of coffee and ate some amazing food. I got to see some beautiful art and learn about the city’s history. I visited the Cloud Gate and took the necessary selfie with it:

CP Chicago

It was such a cool city. But here’s the rub: I almost missed a lot of what made it really cool. See, the way I got around the city was either through public transportation or my own two feet. So off I went, armed with my Transit App and the maps on my phone. I was pretty proud of myself getting off one train, then getting on a bus, and making it to one place or another, whether it was the Museum of Mexican Art or to have some amazing Puerto Rican food in Humboldt Park. But I was walking towards dinner one evening after walking around Wrigley Field when it hit me – I’m walking through this city looking down at the map but I’m missing the stuff I’m passing by.

Now don’t get me wrong, this isn’t a post about putting your phone down. Not at all. I had my phone out because I didn’t wanna get lost in a strange city and end up paying a fortune to uber myself out of it. There was nothing wrong with using my map app; rather, I was on a 1.5 mile walk, basically in a straight line! I couldn’t get lost if I tried! So I decided to just hold the phone down at my side and look around a little bit. And then I saw it: a cool mural here, a fun store over there, and hey look at that cool building. I started to notice the details of what makes Chicago – in my opinion – a really cool city. It’s got lots of character in the architecture, the culture, and the people. And if I stayed glued to my map, I would’ve definitely arrived at my destination, but I would’ve missed what was on the way.

So what does this have to do with being a Heart Dad? Hear me out:

How often do we overlook the cool details on this journey? How often do we let this beast that is CHD consume our focus to the point that we miss small victories?

Here’s a recent example: the other day at bedtime Nolan asked me for a drink. At first I thought, “Stall tactic!” of course. So I went downstairs and, grumbling, grabbed his cup with chocolate milk and brought it up to him. I sat there beside his bed as he held the cup in both his little hands and drank all the milk through a straw. And it then occurred to me, much like it did on the streets of Chicago: yo, this kid – the one who at one point couldn’t move his hands or arms, the one who ate or drank nothing by mouth – is sitting here in his bed, holding his cup and DRINKING! What an incredible reminder of the amazing things he’s been through, about how – at this moment in time – he is winning big time! It made me smile outside and I inside I was downright glowing, And to think I could’ve missed it.

And you guys, I also believe it can be easy to merely be focused on the far-away things, like our kids’ CHD itself. I’m not saying don’t ever think about it; frankly that’s impossible. I’m saying don’t make that the only place you choose to look. Check it out, I’ve had plenty of times where my brain is like “OHMYGODWHATIFHENEEDSATRANSPLANTICAN’TAFFORDIT!” And I get it, we’re only human, and we have this incredibly beautiful – and fragile – life to care for. But please, please, please don’t miss the smiles, the laughs, the funny stories, the hand-holding, the head lean on your shoulder, the bedtime stories, the bathtimes, the singing and dancing, the eating, the playing, the running, and the jumping. Your child has been through so much, don’t let the destination be the only thing you watch; there are so many incredible things to see on the journey.

So today, this week, this month, take some time and really look at what cool things you find on your journey. Remember to celebrate those moments that previously may not have been possible. I don’t know what your situation is, but I know it’s not easy, and I’m hoping that this little exercise helps you find some joy, some peace, and some hope along your way.

Let’s Do It Again!

Do you remember this joke (I use the term joke loosely) from your childhood?

Person 1: Pete and Re- Pete were in a boat. Pete jumped out. Who was left?

Person 2: Re-Pete.

Person 1: Pete and Re- Pete were in a boat. Pete jumped out. Who was left?

Person 2: Re-Pete.

Person 1: Pete and Re- Pete were in a boat. Pete jumped out. Who was left?

Person 2: *Mauls Person 1*


Repetition

Bruh. I know some of you just read that and came to the crushing realization that this joke has become a lot like your life, because you have small children who – let’s face it – can’t listen to save their lives, or just the daily act of being a Heart Parent is a lot of the same stuff over and over and over again. Ah, repetition. Don’t we love it?

If you’re anything like me, repetition is a struggle. My grandparents, at points throughout their lives, worked at factories and sometimes I think about that and can’t imagine doing that kind of work – standing in one spot, doing a repetitive task over and over again until I can go home. I would lose my mind. But hey guess what…Heart Dad life can sometimes be like it too. My struggle is often with the pharmacy: I use the pharmacy here at work because of the convenience and since the cardiology office is right next door in case I need any questions answered. But eeeeeeeeeevery month it’s the same thing for one particular med, and it goes like this:

Me: Hi I’d like to call in a refill for my son’s medicine *gives name and birthdate*

Pharmacy: Ok, which med?

Me: Sildenafil

Pharmacy: Um…it says here you’ll need to use the mail order pharmacy for that.

Me: Yes, I know, but I’ve talked to them and they can’t do this med, so I need you guys to do it.

Pharmacy: Are you sure?

Me: Yes, I’m sure…been doing this same call for months.

Pharmacy: Well let me call them and find out and I’ll call you back.

Me: *screaming internally* ok

*15 minutes later*

Pharmacy: Ok, we’ll have it ready at 2.

Dude.  Same thing.  EVERY. SINGLE. MONTH. It really used to make me go guano as I have to repeat the same thing over and over every single month. Whenever I pick up the phone to call in this med, I know exactly what will happen. But repetition is everywhere: every month call in new feeding supplies, keep track of meds to call in refills in time since they’re closed on weekends, give meds at 6:30 then 2:30 then 10:30. On and on. Repetition is everywhere in our lives!

Why does repetition make us nuts? Well it’s because it can be monotonous,  it’s the opposite of spontaneity and sometimes feels a bit confining. We want to spread our wings and do whatever, whenever…right? Right? But check it out: nature…the very universe itself…is repetitive, and no one freaks out. The sun rises, the sun sets, Earth turns, the seasons change, etc. And this repetition is important to us…if it didn’t happen, we’d freak out and it’d be pandemonium in the streets!

Let’s face it, friends…for a lot of us, the repetitive nature of being a Heart Parent won’t go away anytime soon. There will be meds to give, tube feeds to do, treatments to complete, appointments to go to, refills to call in. I think we can all make an effort to change the way we view these repetitive tasks:

Add Something Positive to the Experience: so if you gotta do it, make it purposeful and a win for everyone. When I give Nolan his feeds at night, it’s easy to see it as just part of the daily routine, but I’ve started using that time to just look at him and – even though he’s asleep – whisper to him that I’m proud of all he’s accomplished. For those couple minutes I can celebrate who he is, and that always makes me feel good, as opposed to “Lemme finish this so I can move on.” Or when I go pick up his meds from the pharmacy: I try to chat up the team if they don’t have a long line. A smile, a “hello,” and a “how’s everything going today?” goes a long way towards helping you not become the “here he comes again” guy.

Remember The “Why” Behind the “What”: as mind-numbing as this can sometimes be, it’s all for a purpose. Your kiddo needs the meds, needs the feeds, needs the appointments. It’s all part of the job of protecting them and giving them the best shot at a great life!

Pat Yourself on the Back Sometimes: don’t get a big head about it, but you know what? You’re doing a really good job…tell yourself that every now and then. You’re playing your part in making this happen and keeping your kiddo as healthy as possible, so give yourself a little bit of grace. You’ll always be ready to go back for more when you feel good about what you’re doing.

Embrace it, Don’t be Resigned to it: there’s a huge difference between “this is my life and I’m gonna learn to work with it” and “*sigh* I GUESS THIS IS MY LIFE NOW.” I get it, sometimes you can feel both, depending on the week or how much you’d have to deal with the kids smearing mystery goo all over the house. But if you can embrace the repetition more than you just get resigned to it, you’ll find it much less of an inconvenience. It’s the new normal, remember? I know it’s not easy, but just try!


Keep your head up, friends. I know sometimes the repetition gets crazy and I know it’s turned your life upside down. You can’t go out like you used to, can’t just get up and go, and your calendar is full of reminders about meds and dr appts and whatnot. I’m not trying to say “just deal,” that would be callous of me…we gotta work with what we got, but we also have to change the way we look at what we’ve got. You can do this.

It’s Right There

There are many times throughout this journey where you’re faced with situations, appointments, and dates that seem like they only exist to crush you.  The next cath, the upcoming surgery, the impending birth of your heart baby.  Sometimes when life gets chugging along, you hit those speed bumps where you get frustrated at the unfairness of it all, and you get angry and life starts to feel like it’s swirling.  It’s during those times where we crave some words of comfort and inspiration.  I know that many of you reading this may be going through those moments right now, so I wanted to share something that inspired me, which came from an unlikely source (don’t you just love those?).  So follow along:

Lately my kids have really been into the Disney movie Moana.  We have the DVD and the soundtrack.  I’m not complaining, though: I actually really like the movie and its music; in fact, it’s often stuck in my head.  Not to spoil any part of the movie, but there’s a part towards the end where one of the characters seems like he is performing a Haka dance.  Now you guys might be familiar with the Haka: it became popular over the last few years once videos went viral of the All Blacks rugby team of New Zealand performing the Haka before they begin each match.

AllBlacksHaka

If you haven’t seen it, it’s amazing:

So after seeing it in Moana, I ended up in a good ol’ internet rabbit hole where I started reading about the Haka dance and it’s meaning.  So the Haka is a traditional Maori war dance performed before battle to display a tribe’s strength and intimidation.  It’s an amazing thing to see and, yes, very fierce and intimidating.

So what does this have to do with us?  Stay with me…

My interweb searching lead me to another popular video of the Haka being performed by groomsmen at a wedding.  It turns out the Haka is also performed during special ceremonies and celebrations and to show reverence to others.  The performance was powerful and moved the bride to tears.  What I really wanted to know, though, was what on earth they were saying during the Haka.  I did some digging and it turns out this particular Haka is called Tika Tonu, which was composted by a chief for his son, who was experiencing some difficult times around 1914.  When I read the words, it blew me away:

What is this problem you are carrying?
How long have you been carrying it for?
So son, although it may be difficult for you,
And son, although it seems to be unyielding,
No matter how long you reflect on it,
The answer to the problem
Is here inside you.

WOW.  Just WOW.  I must’ve read this 20 times and it still moves me.  You see, friends, what you’re facing is hard: handing your baby over to a surgery team, fighting with your insurance, scraping up money for another month of medications.  Whatever it is, it’s hard and it may seem like it’s too strong for you and you don’t know where the strength is going to come from…but it’s right there…inside of you.  Through the tears, the sleepless nights you endure.  You don’t give up and I encourage you never to give up!  The rich, the powerful, the connected – they can’t do what you’ve done so far.  You haven’t crumbled under the pressure…and every morning that you wake up and get out of bed is another day that you’re fighting back and you’re winning.

So yes, while it seems unyielding, you are capable of much more than you even know…so keep fighting!


I love how much this spoke to me, and to think it all started with a Disney movie.  I really enjoyed learning a little bit about this beautiful culture.  Here’s the wedding Haka video (with translation) for you to enjoy (look how fierce that bride is when she joins in!):