You’re probably sitting there reading this and wondering why this post has a reference to the great philosopher Vanilla Ice. Now that I’ve got you hooked in, and before I explain myself, first allow me to set the stage a little bit:
Have you ever had a time – maybe late at night – where you’re giving a dosage of a med to your Heart Kid, or just doing the “are you still breathing” check, and you just get overwhelmed with a feeling of helplessness when it comes to your child’s heart defect? Every once in awhile it happens to me: I sit there and I watch Nolan sleep and it all looks and feels so peaceful. But then there’s all those surgeries he’s been through, and the pain, and the fear, and the monthly blood draws, and all the appointments…and I just get so upset….because I can’t be Vanilla Ice.
But why Vanilla Ice? Unless this is the first time you’ve been on the interweb – or in the world, for that matter – you should know about Vanilla Ice’s 1990 smash hit “Ice Ice Baby,” which features the following line:
All jokes aside, yeah it does get really frustrating that there are days where I look at my son and I feel helpless because there’s nothing that I can do to fix it. I’m not a surgeon, not a doctor, not a nurse. If I could snap my fingers to make the CHD go away, I would…heck, if I could trade places, I would. But this is not something that I – myself – can fix. And it’s a struggle, you guys, because as human beings we are fixers and problem-solvers. We hold problem-solvers in high regard! But this, this tends to bog us down. Do you ever feel that way?
So what do we do, then? Wallow? Nah. For me, I try to get a little bit reflective and look back on how far this kid has come.
Example: the other day I was in the kitchen making dinner and Nolan was looking for a particular book. He asked me where it was and I told him I thought I saw it on his bed, and he replied with, “Well I have to go get it!” and proceeded to run up the stairs. Ok so that doesn’t seem like much, but in that moment I’m reminded about the early days of weekly physical therapy, where he had to learn to sit, crawl, and eventually walk. And a big thing was getting him up and down the stairs safely. And he was so small that it seemed like such a struggle for him. Now he’s running up the stairs. Or climbing on trees at the beach. Definitely a moment to be thankful for.
Or there’s also the time where we were at a farm near our house and Nolan asked me to push him on the horse swing. The same kid who was cut open 3 times in an effort to give him a life to live, was now smiling, laughing, and screaming with joy. The same kid, who as a baby was on a vent and couldn’t even cry, was now shouting, “Push me higher, dad!”
Or those times where he asks me to make him “fly like an owl.” I can’t help for those moments of joy, love, and laughter.
So yeah…as a Heart Dad, I can’t fix his CHD. But what I can fix is my perspective. If I focus on what Nolan has overcome, and especially those wonderful, everyday moments, I can find myself not so down-in-the-dumps. And yeah, I know it’s not easy to do all the time; sometimes you need to link up with other heart parents to help you through…stop, collaborate, and listen, if you will. See? In a way, you can still be Vanilla Ice.
Happy Heart Month, friends! Today’s post is something I hope everyone reads, however it’s really aimed at care providers. I’ve seen a lot of discussion floating around social media lately that’s centered around how care providers can better connect with or listen to patients and families. Obviously this caught my attention and it’s been really interesting to see what patients, families, and even other providers have to say. There are a lot of really great ideas, including taking more time to listen, brushing up on empathy skills, ask different questions, write things down, follow up, etc. All of these things are really awesome and important to do, but if I may, I’d love to suggest 5 simple words that you could say to a Heart Parent that could make a big impact.
“You’re doing a great job.”
Sometimes (or more often than sometimes) we feel like an absolute wreck. There’s the worrying, the googling, the “are you still breathing?” nighttime check (times 10). Before we step foot in the office for our kid’s appointment, we’ve already gone through the stress of trying to find the one pair of jeans that hasn’t been puked on or tried to remember whether the cardiology appointment was at 9 or 9:45 (“or was that G.I.?”). Then we show up, prepared to bombard you with our questions and our concerns and our cares…and you graciously answer those for us.
We don’t take for granted your knowledge and experience. You’re our expert and we need you. You’ve worked hard to be where you are and we couldn’t do this without you. And I know you’re always thinking about listening more or you have managers breathing down your neck about satisfaction scores. But if after you’ve just heard me rain down all my concerns upon you, you ended an appointment with, “Hey…I just want you to know that I understand this is difficult, but you’re doing a great job,” I guarantee it will change the dynamic in the room. Why?
Because I often have no idea what I’m doing. There are small moments where I feel like I’ve got this thing figured out and then others where I feel like I flat-out suck as a parent. Sometimes you miss the dose of a med and you’re killing yourself over it or you forgot to check his O2 sats this time and you never ever ever forget, and the groceries need done, and the sink is leaking, and I have to give my kids their gold stars so they know they’re doing a great job, and everyone everywhere is riddled with flu, and I just can’t…
Maybe…just maybe…a parent needs a figurative gold star and a pat on the back…just to let them know it’s going to be ok. And that you see them (even in their stained clothes) and you acknowledge the challenge…and that they’re not alone. A little encouragement goes a long way.
To all of our care providers: thank you, from the bottom of our heart! You are loved and appreciated and we’re so thankful to have you as guides on this crazy journey.
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!