I don’t remember when I found out the truth about dandelions; I just remember wondering how many other things I was wrong about if a flower that created magical wisps when you breathed on it was actually a weed.

The past few weeks have done their own work of hope-shattering. Our family unwittingly climbed onto a roller coaster the day The Kid’s halo was removed, the day everything was supposed to get better, and that ride has taken us through physical and emotional twists and turns almost daily. I have alternated between brief moments of trying to keep my chin up (which never works–effort, for me, has always been the enemy of peace) and dissolving into angry tears over the struggle we’ve endured. Last night was the first in over a week that TK hasn’t woken up puking. We now think that, though the injections last week kicked off the Vomit Comet, his nightly hurls may be reflux-related, and thanks to The Husband’s ability to persist in Google research while I lie face-down in defeat on the couch, we’ve found a way to address that issue and it seems to be working.

But I’ve been burned by hope before.

One good day is followed by three bad ones. And yesterday, TK decided to act like a two-year-old in the middle of Target. After everything he’s been through, sometimes I forget that’s what he is–a two-year-old–and I want to cry out that we don’t have time for that, too. You don’t get a tilted head, muscle spasms, and a predisposition for tantrums. Pick one, please.

It sounds like an echo of what I’ve been silently muttering to God lately: this is too much. Something has got to get better. We’ve been to Children’s three days in a row this week, just for routine appointments.

Then I remember there are kids who live there.

And I think about how we’re all facing some battle, and the point is not whose is bigger and badder. Because I could, quite handily, write up a list of everything TK has been through since birth, expanding upon the last three weeks in particular in vivid detail. I’ve made that list in my head, in my prayers, like an argument in a courtroom. Let up already, I’ve thought. Enough. I’ve traveled the emotional terrain from discouragement to despair to hopelessness, and that is some rough country. I don’t like the person I became on that trip. I’ve pushed people away and looked to place blame. I have scowled upward and hardened my heart and narrowed my eyes to the point of blindness. I have felt every word I’ve ever written here stare back at me like a challenge: do you really believe this? NOW, do you really believe?

I have wondered if I do.

It’s one thing when you just have yourself to feel sorry for. It’s quite another to see your child in pain and agonize on his behalf. I’ve given in to the lie of lonely, which I am convinced is the most insidious and effective way that evil accomplishes its work in this world: to have us believe that we are the only one who feels a certain way or is facing a particular struggle. It isn’t hard to buy into that when you sit across from a series of doctors who tell you they’ve “never seen this before.” Who, on staff at one of the best children’s hospitals in the country, cannot find an answer. “You do not solve the mystery, you live the mystery,” wrote Buechner. It was a nice turn of phrase until it became about my son’s neck. Everything is a turn of phrase until you live it out.

This is a boy whose pain I don’t know because he can’t tell me; but it’s also the boy who grins at bubbles and, usually, chooses to watch their descent to the ground rather than stick out his finger and pop them. I wonder about the damage his tilt is doing even as it perfectly captures his inquisitive nature; as he always finds moments for laughter; as he smiles when we enter the room and encircles one of our fingers with his whole hand. He is magical, this one, I am sure of it. And I get to have him, and everything that goes with him.

No art history professor ever gained tenure by looking at a toddler’s scribbles and identifying them as a Picasso. And I have grown past my days of calling dandelions flowers; I’m much more inclined to call a spade a spade now, then complain about how it’s not doing its job right. So there’s little chance that I’ll fail to see hard reality where it exists. But I know, after comparing what I believe and what we’re going through, that one does not contradict the other. I know there is a way to be realistic and hopeful. To find beauty in the scribbles and potential in the beginnings, in the seeming false starts and steps backward. I know that there is grace in the mystery and though my heart cries out for an answer, for the hard part to be over, I know there is something that holds us in the meantime, that makes us never alone. I know that there are flowers that can look like weeds. I know that my hope now, bruised and tender, is also more durable and real–a hope that cries a lot, which may seem contradictory but is actually okay because it’s a hope that recognizes that things shouldn’t and won’t always be this way. I know that my words come from an ever deeper and more honest place than they did before. I don’t know all this because I have it on paper or in an x-ray, but I do have it in the way one season follows another like the morning follows the night, in the way he says “bubble” and watches the circle bob in the air until the wind carries it like a wisp, seemingly directionless, but actually to a safe landing and the three of us turn together, always headed home.