I’ve always loved exploring. I remember driving in loops through my small town for hours in high school, totally lost in my own daydreams. For how much I drive, I should be much better at directions. I somehow maintained my ability to completely drift into my imagination from childhood all the way into adulthood. It probably makes me a little odd. But it also makes it easier to fall into deep prayer time with the Lord…so we’ll call it a gift.

Long drives have always been the best escape for me, and they’re still my favorite way to experience a new album, to grieve bad news, to celebrate victories, to calm my nervous system. I often go the long way to our daily errand destinations, just to extend the car karaoke time with the kiddos. I love it. They love it only sometimes.

We’re navigating some new things with Sunley’s health. She’s overall doing great, but we are way-finding through very unknown paths of living long term with a Fontan (her most recent surgery in 2022). It is complex. For a while, after she was born, I was afraid of the very obvious, big, bad thing that could happen. Then I finally got to a place where I wasn’t afraid of death. I didn’t want it for her, but I don’t have fear over it. And what beautiful mercy, because she didn’t die! And I actually find myself believing lately that she will outlive me — Something I didn’t dare say out loud for years. So now, my human flesh finds itself dealing with a new fear: The progression. How bad is it going to get for her? How many times will I have to advocate for better options? How many diagnoses will she collect over the years as her body fights? How many days will I feel totally alone in this?

Currently, we have been treating some new dermatological symptoms with no answers, and I’ve been going on long drives. But those drives are losing their luster. I could explore every inch of the earth, touch every flower born from dirt in every secret meadow — None of those places would bring me a cure for Sunley. There’s nowhere I can go that holds the answer. Even my imagination doesn’t offer the escape it used to. There’s nowhere that illness isn’t a huge part of our reality.

I went on a particularly long drive today, after a really frustrating appointment with a new specialist. I felt that deep ache in my gut — emptiness where there shouldn’t be space. I’m totally helpless to do anything for Sunley. And I’m really very angry about it.

“You didn’t heal her.” —I was surprised to hear myself say it out loud. It’s been a very long time since I felt angry over this: the unhealing that has brought my life such purpose, and my spirit such deep joy. “How bad are you going to let it get for her?”

I just started saying I’m unsatisfied, over and over. My voice got quieter, but the words rooted deeper.

I could feel His ache, too. He hurts with me. It is all unsatisfied. Unjustified. Unfinished.

But it is decided. It will be satisfied. It will be justified. And it will be finished. Her healing will come, and mine will too.

And there it is, yet again — This redundant-but-life-giving cycle of truth: I am angry, but at the same time peaceful. I am grieving, but at the same time joyful. I am everything except alone with this.

“How bad are you going to let it get for her?” How beautiful it will be.

“You didn’t heal her.” No, I have not.

I’m still angry. I’m tired. I want better answers and better options. But I am resolved to also be okay. My feet are planted in good soil. I have been given deep roots, and even some good fruit.

I don’t know what diagnoses she will collect over the years. I don’t know where her health journey will take our family. It’s all a very uncomfortable, unmarked road.

And I’ve always loved exploring.

(scroll down for the perfect song to accompany an angry drive)