Cirque du Today

If there's one skill that our whole family has been honing lately it is flexibility. Every time Jonah's situation changes—and it changes frequently—we have to be ready on a moment's notice to swivel and twist and turn our plans upside-down. Some days I feel like I belong to a troupe of those gravity-defying Chinese acrobats, dangling precariously from a wildly swaying trapeze, my limbs looped all around like a human pretzel. How did I end up here? Why did I agree to this? It feels like madness. It probably looks like madness, too. But in reality it's the only sane thing to do. If I were to remain stiff and still—if I stubbornly refused to take part in this swirling circus act—I would simply be knocked flat on my back by the force of the action around me. We all must either bend or break. The show must go on, whether I participate willingly or not.

I am willing. I truly am. But I am awfully sore.

Before Jonah's diagnosis, we tended to be creatures of ossified habit, who usually made plans that required little elasticity, little variation from our comfortable, predictable routines. But on one startling day in August, all of our carefully constructed plans were spontaneously gutted and remodeled, and now our days consist more of vague expectations than of well-marked schedules.

Birthday surprises from my favorite people.

We avoid making time-sensitive promises. We RSVP with a caveat. When we celebrated my birthday last week, we were uncertain how Jonah would be doing over the weekend, so we waited until the last minute to make a decision about where to go. I was supposed to sign up for a specific date and time for parent-teacher conferences, but I didn't because, well, I have no idea what I'll be doing two hours from now let alone next Thursday afternoon. With the help of my mother-in-law and many friends, we do try to stick to a schedule for the rest of the family, and our other kids are adjusting to the “new normal,” but Jonah's situation is a constant question mark looming over each day's activities, and we all sometimes feel stretched a little thin.

I have grown a little weary of answering the seemingly simple question, “So, what are your plans for today/tomorrow/this week?” I just never know. I have been reminded over and over of what the apostle James says: “You do not know what tomorrow will bring. What is your life? For you are a mist that appears for a little time and then vanishes. Instead you ought to say, ‘If the Lord wills, we will live and do this or that.’” This has always been true, but it's never seemed more obvious. More times than I can count, as soon I tell someone our “plans” some unforeseen situation arises to change them. If I inform you that Jonah's going to get a blood transfusion today, he doesn't. If I tell you that Jonah is likely to have a good week, then he spends the whole week in bed sleeping or puking. And if I tell you that I expect him to feel terrible after his chemo, then sure enough, he'll be cheerfully sitting up, enthusiastically watching the World Series and eating heaps of spicy Thai curry. So who am I to tell anybody my plans? I am not writing this story. I am simply living it. And living it well means living it in faith. Living it flexibly.

The view from our hospital room after Tuesday's storm.

Just writing these updates can be a difficult exercise. I delete more than I publish, wondering what tone to take, what details to share. Dwell too long on the struggles and heartaches, and it sounds like an ungrateful pity party. Spend too long giving glowing reports of happy moments, and it reads—at least to me—like a cheap veneer. The fact is, both sides of this story exist simultaneously. Dark clouds and sunshine share the same sky.

On the one hand, Jonah appears to be moving steadily toward recovery, God is helping us to grow and mature, and we have a small army of friends and loved ones praying for us, holding us up, catching us when we're falling, and helping us to untangle from these acrobatic knots we're tied in. We are blessed beyond measure. But on the other hand, we have a child missing his friends, missing his routine, missing his health, missing out on school, and fighting a life-threatening disease. We exist in a state of constant flux and sudden change, perpetually living out of suitcases in a no-man's land between hospital, lake house, and home. We have to stay on our toes as much as any prima ballerina, and we are being stretched far beyond our comfort zones. I can definitely feel the burn. 

Right now, we are in the hospital with Jonah, hoping we can discover a solution to his ongoing malaise. He's been tired and dizzy and prone to random fevers and daily bouts of nausea. And now he is also receiving four consecutive days of IV chemo—the variety that usually makes him feel intensely sick. While we did arrive here with a loose set of expectations, we were hardly surprised when the plans changed. 

Jonah working on a little Latin in the hospital.

First, Jonah was dehydrated after a weekend of illness, so he couldn't receive his chemo until he was fully hydrated, which took many hours longer than we had expected. He was also supposed to receive blood after his first dose of chemo, but he ran a fever again, and the transfusion had to be postponed nearly twenty-four hours. And yet, so far Jonah has tolerated the chemo far better than we anticipated. He was able to eat a real breakfast even after his chemo, and then ate a big, spicy lunch and dinner. This, too, was unexpected—and very welcome. But then the nausea medication started to make him so dizzy he could hardly walk and so loopy he couldn't finish a coherent sentence or remember what he'd done five minutes earlier. Then he started having abdominal pains. Or bladder spasms. Or both. He can't face the sight of a muffin, and yet he craves Panang curry. One minute he's smiling and doing craft projects, and the next he's flat on his back moaning and clutching his belly. I never know whether it's best to make him nap or eat or study Latin or take a walk.

Yesterday the oncologist was expected to check in with us first thing in morning, but she got so busy that we didn't see her until early in the evening. We are hoping that Jonah will be discharged this afternoon, but we know that this is also subject to numerous factors outside our control. We wanted the family to spend the weekend together, but when Asaph started throwing up last night, we realized that, in order to protect Jonah, a family gathering is not going to happen. Plans may change and change and change again. And if so, we must remain flexible; we must be ready to spin and bend. 

I like to think that in years to come we will spend a lot of time laughing over some of the crazy contortions we found ourselves performing during this three-ring circus. With a little distance, a series of mishaps that once seemed like a miserable crisis may seem more like a well-timed comedy sketch, and we will be able to appreciate the intricate series of plot twists that formed this chapter of our story.

What makes these moments tolerable is knowing that while we may have lost control of a particular scene, our God hasn't. He is writing this story, and He writes well. He writes well even during the suspenseful chapters. Especially during the suspenseful chapters. This particular chapter has been a real nail-biter, and I confess that I am one of those folks who prefers to inhabit the tamer plot lines—more Austen and less Tolkien for me, thanks. When I reach the tense, frightening chapters of a novel I almost always skip to the last page, just to make sure that everything turns out all right in the end before I want to keep reading. Weak, perhaps, but it's the spoilers that keep me going. And it's no different in this real-life cliffhanger. 

While I may not know many of the intervening details, I can take courage because I already know that this story ultimately ends well. I can step out from the wings to grab hold of the swaying trapeze, to bend with every plot twist in this particular suspense story, because I know the Author; because I know the Author is good; because I know His promises are true; because I know with a deep, unswerving confidence that, although I might not yet see how, all things—all things—are working together for good.

“In all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.” —Romans 8:37-39