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”:
One of the cool features of Nolan’s Progressive Care stay was the TV in the room. Sure, it had your standard remote/call button combo, but you could also plug it in to a keyboard and access movies, music, and websites. That was pretty dope, so I worked it into my visits with Nolan. I’d go to see him, turn on Pandora on the TV, and turn on the station for my church’s worship band: Elevation Worship. Then Nolan and I would sit in a rocking chair and just rock and listen to some worship music for hours. It would become the best part of my day by far. Most of the time Nolan would sleep, but sometimes he’d just look at me for long periods of time.
One day, though, things were different. It’s funny because there wasn’t anything inherently different about that day: I wasn’t having a bad day, I wasn’t bummed out about anything…it was just a regular day in the neighborhood. I had Nolan in my arms and we were rocking away in the chair. At one point I just looked at him: marveling at his big eyes and his cute little nose. And I whispered to him, “I love you so much, I would do anything for you.” Then BAM. He did it again, God decided to show up. Not physically show up, but more like make a PSA in my heart. You’ll remember from https://hlhsdad.wordpress.com/2013/11/03/dear-god-its-3am-im-scared-and-i-dont-like-you-right-now/ that God did the same thing when I was struggling before Nolan’s surgery.
Just like last time, the word was very still and quiet: “Now you see how much I love all of you, and you are all born broken.” WOW. And then – this is gonna sound weird – it’s like God gave me some kind of deep understanding of His love. You know, we all know John 3:16…we memorize it, we see it on signs at football games, people put it on business cards. But do we really know what it means for God to love with an overwhelming, totally-forgiving love? Like do we REALLY know what that means? I loved my son so much, I just wanted to pour out every bit of me to make him feel loved and whole, even though nothing I could do could make him whole. But in that instant God used that example to show me what His love was really like. All I can describe it as was heavy. Really, really heavy, like the vastness and greatness of His love was bearing down on my shoulders to where I couldn’t stand the presser and was overwhelmed. And that was just a glimpse.
And just like that, I was back in the rocking chair in Nolan’s room with him in my arms asleep. And on Pandora, the song “How He Loves” by John Mark McMillan came on. Almost as if right on cue. I was completely speechless. And overwhelmingly moved. I listened to the words of the song and played that whole experience over and over in my mind. Oh how we take God’s love for granted, especially since we’re all messed up: not always physically. I think no matter what we’re going through, we need to stop and really think about God’s love. About how much He loves us in spite of the abuse and rebelliousness we hurl at Him. His love is so strong and only He has the shoulders to bear it all. Thank you God for your love. Thank you for showing me your love in a hospital room. Thank you for showing me there’s so much more than what’s in front of me.