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”: