Some might call me insane. Out of touch with reality.
Our son Landen has long qt syndrome (lqts). Suffice it to say, his heart suffers from an electrical problem. This electrical problem can cause the heart to “go wonky”—it can cause the heartbeat to become so chaotic that it seizes and stops altogether. Or, if you’d rather. His heartbeat can degenerate into torsades de pointes, and further degenerate into ventricular fibrillation, and terminate in cardiac arrest. Let’s stick with wonky.
There are different types of the syndrome and some crossover with the specific triggers. For some types, the trigger is exercise, for still others, startle. Landen suffers from Type 3, and in almost every instance, his heart woes are triggered by unknown changes occurring in his heart during transitions between levels of sleep. So every time he lays down to rest, he is in danger of suffering a life threatening event. He does have a few other triggers—fever and overheating.
The severity of lqts varies. Some people live all their lives without a single symptom, and some people have breakthrough heart events even though they’re taking the appropriate medicine, and some people die. And there are all kinds of degrees in between. Landen is fragile. Unfortunately, he falls in the category of the more severe lqts sufferers. He has breakthrough events even on his medicine, and even when we’re being vigilant.
In my blog, I’ve tried to get away from talking about Landen. I thought that maybe it was time to move beyond his illness. I thought that maybe I was being self-indulgent. That by talking about it, I was staying in a familiar place. A place where I couldn’t be disappointed by more bad news. A place where I maintained a singular focus (my household) and ignored everything else. No plans, no dreams, no joy in the journey.
But after last week, I am convinced that our story and this journey is meant to be shared.
In The Lion, the Witch, and the Wardrobe, of C.S. Lewis’s series, The Chronicles of Narnia, the white witch has made it always winter in the land of Narnia and never Christmas. Aslan is the Christ-figure in the story, and he has been absent from Narnia for generations. But when the landscape thaws, and springtime emerges, the Beaver says (yes, the animals talk in Narnia), “They say Aslan is on the move—perhaps he has already landed.”
Our God is on the move and our story is meant to highlight that truth.
God moved in the guise of a tantrum that Landen had last Wednesday.
The propranolol he takes for his heart makes him subject to tantrums. After the fit passed, I heard him in his room berating himself. “I’m so stupid. I can’t even be good.” Things like that. I called him into my room, held him close, and told him what a gift he was. I said, “Do you know the miracle that you are? Do you know how much God rescued you from? Landen, God his incredible plans for you, you are so very precious to Him. When you say bad things about yourself, you’re insulting God because He made you and He loves you.”
After that little talk, I emailed our cardiologist, his nurse, and Dr. Ackerman of the Mayo Clinic. “We’ve got to do something about this propranolol,” I told them. Our cardiologist called back and talked me through the process of switching him to another beta blocker. The whole thing would put us in the hospital for several days.
God’s second movement was revealed through a prayer.
The same day as the tantrum, I prayed. For the past few months my prayer has been tied to Hillsong United’s song, “Oceans (Where Feet may Fail).” The song is a prayer to God, asking Him to “lead me where my trust is without borders.” In essence it says, lead me to a place where my faith is stretched, and I’m forced to rely on You. It says, I’m not content to live life safely on the shores, when the next place is so much closer to You, and I can only get there if I dare to cross the vast oceans between us. God honored my prayer earlier this summer by allowing me to step out on extreme faith and try this writing thing fulltime.
But, last Wednesday, I told God that I was starting to feel safe. I told Him that the shore was getting too close, and my faith wasn’t forcing me to reach out for His presence, or to reach out for His stalwart hand to support me. The waves had become eddies, and I was feeling like I could manage those on my own. My prayer went something like this: “God, I am not asking for anything bad to happen. I don’t want anything to happen to Landen. But you absolutely know what this family needs, and I want my circumstances to continue to call me toward You. There is so much more joy in the dangerous journey out here with You, than there was in the safety of the shore.”
The next morning, Landen shocked. And we began a new saga that will lead us again through the valley of fear.
But, I’m hopeful; and no, I’m not out of touch. Because, do you see it? My God is on the move, and He wants me to share that with you. The tantrum, the email, the phone call, the prayer…none of it was coincidence. Without my prayer, I’m convinced that the circumstances would be unchanged. Landen would still have shocked. But my response would have been very different. Usually, it’s only in hindsight that I see God’s hand, but because my focus was on my Father, I had a front row seat to notice that He was in motion. And my Father in motion is a marvelous thing to witness.
And that’s how we can face this next leg of our journey with peace and joy. It’s not because I’m awesome or Zen or out of touch with reality. It’s because my eyes are on God, and springtime’s coming ‘round again. Because my Father is on the move.
📷Chaka Heinze | 📷Post a Comment | 📷Share Article