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.
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!
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…
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.
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!”
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?”
BRUH. Don’t even get me started.
When You Finally Get Home
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
How many times do I have to repeat myself?!
When the Bills Start Arriving
It is insaaaaaane how much healthcare costs!
To be honest, they’re all pretty nerve-wracking.
And Then the Cardiology Appointment Goes Well!
“See you in 6 months” never sounded so beautiful.
And You Just Keep Going
Sleep?! What is that?
Flu Season is Hermit Season
Sometimes it Feels Like People Just Don’t Get It
In the End, This is What It’s All About
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!
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:
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.”
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”:
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.
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?
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.
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:
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).
Every birthday is a big source of celebration in our home, especially for Nolan…every year is a gift! Love you boys!
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:
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.
Hey Friends! I know it’s been a long while but I felt like it was good to let the summer just kinda come and go without worrying about blogging…looks like it spilled into the fall. Whoops! Sorry about that. Anyhow, it was a good summer and the BIG thing coming up for both Nolan and Grant was…THE START OF KINDERGARTEN!
Nolan did really well finishing up pre-k at one of the local public schools: he had an amazing teacher and assistant and we’re so thankful for their loving patience with him and their ability to get the best out of Nolan. His obsession with the ABC’s has made him an amazingly-good reader, but there’s still a lot of things he needs to work on, mainly writing and cutting. More importantly, we had to meet with his new school (our actual neighborhood school) to review his IEP plan in regards to things like classroom socialization, physical therapy, occupational therapy, etc. The school was very gracious and accommodating and they even had a kindergarten teacher go to his pre-k class to hang out with him and evaluate him in action. She seemed to love Nolan (who wouldn’t?) and hoped she’d be his teacher. They planned to carry on all of the needed therapies there at the school. Nolan and Grant both did their kindergarten assessments in July and then it was just a matter of shopping for school supplies, school clothes, and all that fun stuff.
While Nolan has shown improved eating with his new feeding team, he’s still on the g-tube and we had to go over some feeding stuff with his school, so we requested a meeting to develop a 504 Plan. Again, the school was amazing and scheduled a meeting the Friday before school was supposed to start. His teacher (who was the one who evaluated him, yay!), the Assistant Principal, the School Nurse, and others were present and we were able to tell them why it’s so important for Nolan to remain hydrated AND why it’s important for him to get a good number of calories in his day. We talked about his heart and everything he’s been through and told them they’re a big part in helping him succeed at eating by mouth. We also talked about using the g-tube if he wasn’t drinking well and warned about the g-tube being accidentally pulled out. The plan was if he didn’t drink a certain amount by lunch then the rest in his cup would be given via the g-tube and the school nurse would show the teacher how to use it. I think that stressed out his teacher A LOT, and we did our best to calm her down and give her the confidence that all would be well…not to mention the school is literally across the street from our neighborhood, so my wife is super close if they need her. The plan was in place and then we spent the weekend prepping for the big first day!
I’m sure a lot of you reading this have either been nervous about the start of school with your heart kid or are getting nervous about school coming soon. Trust me, I was there too. I was always wondering whether this was the right school for him, whether he’d be safe, whether he’d behave, whether he’d fit in, etc., etc., etc. But the reality is this: we did everything we could have possibly done up to that point – we discussed all the issues with his school, including the IEP and 504 plan. We talked to his teacher and principal and made ourselves available for whatever. The next logical step was to walk up to the school and hand our little boy off to his teacher…
So the day finally came. Our little Nolan; the one who survived 3 open-heart surgeries, the one who required multiple attempts at chest closure, the one who endured so much therapy just to sit, stand and walk…Nolan had his first day of kindergarten:
I mean look at this kid! I was so proud of him AND Grant. This was their time to shine and to kick off an amazing school year. They had a step-down week for their first week, so they basically only went for one day, but it was an exciting day. We drove to the school, parked, and walked our boys in to their separate (for the sake of their poor teachers lol) classes. I gave Nolan a big hug, told him I was proud of him, and told him to have lots of fun. And then we walked away.
At first I was nervous, worried, excited, anxious, all of that; but it eventually went away. I took the day off from work, and all the kids were at school and everything was quiet…Awesome! We went out for a little bit and just enjoyed some time together…until the school called.
After a brief second of dread, we found out it wasn’t an emergency, it was just that Nolan was being stubborn (imagine that) about drinking his chocolate milk and the teacher didn’t know how to use the g-tube yet and could we help. No problem! So we drove back to the school. Honestly the big worry was that Nolan would see us and wouldn’t want to stay in school. He’s kinda a homebody and we thought for sure that’s what he would do. So we got to the school, got visitor badges, and went to his classroom…and there was Nolan, happily sitting at his spot at the table painting with his favorite color, red. He looked up at us and rather nonchalantly said, “Hi Mom and Dad, look I’m painting.” And we walked up and asked him if he’s ok and all of those thousand questions and he basically acted like we weren’t even there haha that little troll. We tubed him the rest of his milk, and gave him a kiss and he was essentially like “Go away, I’ve got this.” and as we walked out of the class we could hear him singing his phonics song with his class, “The snake is in the grass, the snake is in the grass, ssss ssss, the snake is in the grass.” Everything was ok, and everything was going to be ok.
School years are a marathon, I know it, and there will be easy weeks and difficult ones; but I think Nolan is in the right place for him – his teacher is super sweet and kind and he loves learning his letters and numbers. I know with our heart warriors it’s never as simple as sending them off to school – there’s so much to plan for, so much to worry about, and so much to explain. One that’s all done, though, keep an eye out – your kid will definitely surprise you! Here’s to a great year, kiddo.