Everything difficult indicates something more than our theory of life yet embraces. George MacDonald

courtesy now-here-this.timeout.com

The Husband and I, we like to make plans. He does Excel and I do lists, and we stare off into the future and organize it into virtual Container Store files. But as you may have gathered, this season of our lives is not allowing for many plans beyond “pee sometime in the next hour” and “shower with a two-year old watching”.

Before The Kid’s surgery, though–before the halo and the muscle spasms and the vomiting and the victories and the defeats and the way-too-much-Mickey Mouse Clubhouse, we went to our local frame shop, TK in tow, and purchased a 27×40 inch frame with the intent of fashioning a collage that would contain his experience. This chapter in his story, which we blissfully and ignorantly hoped would be closed come halo removal day.

The frame sits propped up against the breakfast room wall, same as the day we bought it.

I’ve gazed upon it with hope that soured to fear; pleasure turned to bitterness. I’ve glanced at it as we’ve brought him home from appointment after appointment, as we’ve crossed that threshold with snow sticking to our feet and bubbles to our clothes. It sits there, wrapped in plastic, and nearby sits a stack of cards and printed comments that will one day cover its white space with a story. But it feels too soon to get to work just yet. Because the problem is, the story continues.

Or is that a problem?

There are days–most of them, actually–when I’ve felt like Carrie with her Wall O’ Brody, first trying to the connect the dots of who, then where, he is, with my version more a why this tilt and when can we fix it? Neurosurgeon A goes here, Neurosurgeon B here, physical therapist over here next to orthopedic surgeon and now find a spot for the craniofacial and orthotics guys…and let’s find the connection. The answer. The solution.

But it’s always about more than just a singular answer. Why do I keep forgetting, keep trying to reduce our lives down to something other than story?

Because after all that TK has been through, and us with him, here is what I know: we have not been left, and this is not over. And all the beauty in the world (and beyond it) lies in that truth.

Nine years ago, I felt my heart stretch until it nearly ripped in a U-Haul across eighteen hundred miles as I, unknowingly and with tears in my eyes, headed toward a new faith, new friendships, and TH. And now, nearly a decade later? The same pain amplified by the power of unconditional love as grace has tempered my pleading why into so much more: what new, great thing will be brought out of this? 

It’s not just about me anymore. Which makes it harder, the stakes greater, and the story so much richer.

And I feel it, how everything that doesn’t belong within me is being shaken out, burned away, painfully and somehow beautifully.

From a cross-country U-Haul to a suburban SUV on a Saturday afternoon spent with The Sis and Niece and TK, blowing bubbles in the yard. He cried the whole way there, tears of discomfort or toddlerhood–it’s anybody’s guess some days. But on the way home, I hear a giggle in the backseat, and I turn to see him looking at some patch of light or source of mirth that only he can see. (There’s so much that only he can see.) And I reach back, grab his foot for a tickle, and his laughter reaches a fever pitch as his eyes meet mine, and when the light turns green I barely see it through tears. Tears of joy in the midst of this long road, this story that refuses to not be told, and the sweetness of them, of his laugh, is unmistakable and would have been unknowable without everything he’s been through. They just wouldn’t have mattered as much. A thought fills my heart until I think I may burst with the unquenchable glory of it all:

The deeper the pain, the greater the beauty. 

Could it be true?

Now this is something to hope for. This is better than an upright head, more than a singular answer. This is everything.

I think about Carrie’s wall, about our collage, and I know that the difference between them is that the story the collage tells, whenever it ends up being made, can never be torn down in a fit of frustration or undone by the ways of the world. In it, everything will be connected and nothing will be wasted.

The narrative of grace–the longing stretched across time, the wounded who stayed with us, who stays with us, the now-but-not-yet–this is the only narrative in which his story makes sense. In which our story makes sense.

The frame waits, and so do we, even as everything that will be told by it can never be contained inside its edges.

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.

I stumbled downstairs this morning and through bleary eyes noted that the hydrangea I’d bought Monday, the one sitting in the kitchen window, was already dying. Its purple-blue blooms were dry and brown on the edges. After two days.

Fitting, I thought, after the day and night we’d had.

On Monday, The Kid and I had wandered happily around Trader Joe’s, a week of improvement under our belts. The plants stood out to me: a vote of confidence in the certainty of spring, not to mention the flowers that populated the tables and corsages at my wedding. I placed one in the cart and TK looked down at it, head slightly tilted, and I told him what they meant. It was a good day.

Yesterday, though? Yesterday was one of those days when I feel I deserve credit just for getting through it sober. TK ended a playdate by screaming in the car on the way home before blessedly passing out. Our schedule shot, I put him directly to bed for an early nap and sacked out on the couch myself, exhausted from a night half-spent in his room after he had woken up and puked for no apparent reason. A couple of hours later, we were headed to Children’s Hospital for his second appointment there in two days. We had a follow-up with the doctor who injected him with botox two and a half weeks ago. That doctor walked in and took a look at TK, saying, “Oh.” Tilt unresolved. Shoulder hiked up. He felt the muscle in that shoulder and recommended an injection of local anesthetic to calm down the spasms. Within minutes, I was helping three people hold my son face-down on a table as he endured the needle placement. When they left, he fell asleep on my shoulder. Then the puking began. I mean, he destroyed that room, chunks of Goldfish everywhere.

When the carnage reached an intermission, I carried my sleeping boy across the unlit parking deck and to the car. That walk, the reverse of which a couple of hours earlier had been punctuated by TK’s excited “Ooh!”s and our shared laughter, felt nothing short of solitary now. His unconscious silence and my cramping arms fed the lie that beckoned at the edges of my tired mind: You are all alone.

It took us a lifetime to get home, traffic lengthening a typically ten-minute trip into nearly an hour, this journey punctuated by TK’s recurrent bouts of hurling and my fists pounding the steering wheel. I’m so tired of how hard this all is. There are moments when the only prayer is Why?

I didn’t get a because. Still don’t have one. But I did get an extra pair of arms in The Husband’s waiting help. I got the fact that after the ride from hell, as my child got sick repeatedly and helplessly in the back seat and I couldn’t immediately fix it, we arrived safely home. I got TH relieving me and staying with TK. I got surprise cupcakes delivered to our door. Thanks among the why.

And this morning, I got a mountain of vomit-stained towels and a dying flower.

But TK woke up and ate and kept it down. The towels went through the wash. And in a vote of confidence in the power of healing, I doused that flower with water and sat beside TK on the couch. A few hours later, the towels emerged fresh and unstained, and I stood at the sink getting ready to make lunch for my recovering son. I glanced up and saw the blooms, life refusing to give up and instead, reaching to the tips and bursting with color. The broken and the hopeful, always intermingled. Fitting.

I’m just going to come out and say it: part of the difficulty, for me, of The Kid’s bumpy recovery is that it stole my opportunity to wrap up this part of his story and send it packing. I was all set to make a triumphant return to social media, posting pictures of his upright head and smiling face, letting those who have supported us know that their thoughts and prayers prevailed and we would be living out the rest of our days in the kind of domestic bliss most people only pretend to have attained via Facebook status updates. I even wondered to myself if I would get spoiled, take things for granted, venture far from grace once everything was fixed.

I needn’t have worried.

When it all feels like one cosmic joke at your expense, when the weight of your expectations come crashing down and your sense of entitlement is both revealed and painfully disassembled, what are you left with? For me, the answer was: a lovely place setting for one at my own pity party. I felt bitter. Confused. Betrayed. So I felt very, very sorry for myself for a few days. I don’t doubt that I was (even more) difficult to live with, to be around, for those who have to tolerate me ad infinitum thanks to the bonds of matrimony and genetics. I resisted and cried and got angry.

I don’t regret a second of it.

Grace stood beside me at that pity party, passing on participating but willing to offer a lift, and waited until I was ready to look up again. To believe again. And then grace quietly loved me out of my state, eyes red and throat thick and heart bruised, and pointed me back in its intended direction.

I don’t regret it, because it was honest and I am flawed, and sometimes I have to be reminded of that to know the fullness of grace’s work.

Not that I’m over it, or that I’ll never venture to those depths again. On Wednesday, for instance, I hauled The Kid into his neurosurgeon’s office and waited with him in one of the many rooms we’ve frequented there, watching as he banged cabinets open and shut, silently cheering him on. That’s right, buddy. Leave your MARK. And when the doctor came in and brought a lack of answers with him, when he mentioned the possibility of the halo going back on, I wondered if anyone had ever slapped him in this room.

So yeah, there might be some residual anger.

But the strangest thing happened after that urge toward violence passed. And this was it: I didn’t cry. Not immediately, anyway, and when I revisit that possibility of Halo: The Sequel in my mind…well, first of all, I refuse to stay there long. And then, after I peel back the layers of rage and hysteria, I find the strangest sense of peace. Almost like it passes understanding. Because I know, more even than I know the most festive color theme for a pity party, that it’s going to be okay. And I feel that maybe I’m reaching that stage of enlightenment that Whitney sang about, that bend in the road of grace, in which it really is possible to transcend what is happening in loyalty to what could be. To go by more than just what I see.

Because, with faith in anything beyond myself, isn’t that sort of the point?

I’ve wanted an easy button in the midst of this slog. Instead, I have been the recipient of slow-cooked, incremental hope. Grace in the moments rather than big events. Like the fact that, despite TK’s rhythmic cries throughout the day, those days always end now with him sitting on my lap, his head on my chest, as books are read–something we couldn’t do with the halo. There are the moments in public, like this morning in Target, when sitting in the cart becomes too much for him right when they’re ringing us up and I have to pick him up, hold him close, sing into his ear, and not care what the people around us think. There are the episodes of Mickey Mouse Clubhouse on repeat and the forty minutes it takes to dry my hair because comfort breaks are needed and the renditions of “Hold On” sung to him from a prone position on the couch while he circles the dining room and I’m counting the seconds until TH gets home because we have officially run out of things to do.

“Grace sat with me until I could walk in it again,” reads a page of the book that arrived yesterday as a gift to me, just in time. I find that’s how most things I need are arriving these days–just in time. Like the Lent devotional I read this morning while TK had a few moments of peace with his blocks, the one that mentioned the bow. Formerly a weapon, now a symbol of hope, and it appeared among the clouds–with them, not after they had passed.