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.

I was told this would be the easy part.

Granted, I am the one who said this, but still. We got through the halo and expected smooth sailing after its removal.

This is not smooth sailing.

Our lives since Friday have felt like a steady stream of struggle. The Husband and I had, long before the halo was recommended, scheduled a beach getaway for last weekend. We delayed it by a day once the removal was scheduled and drove to The Mom and Dad’s on Friday afternoon, The Kid giggling happily in the backseat. So far, so good. Then we sat him in his booster seat for dinner and he blew cheese cracker chunks all over the kitchen.

It went downhill from there. An early morning Saturday phone call and prescription pick-up, hours of crying and holding and comforting. Begging him to drink Pedialyte and monitoring his wet diapers to determine whether an ER visit was necessary. More of the same the next day. We hoped he would turn a corner when we came back home on Sunday, the way he had when we returned from the hospital and he practically walked on water.

The nausea subsided, but a new villain reared its head: the return of the dreaded tilt. I turned from the sink Monday morning and saw him in his booster seat, head drooping to the left. My heart sank and I felt sick.

Not again.

For two days, TK has weaved in and out of fits of fussiness ranging from whining to inconsolable screams. I’ve felt catapulted back into the newborn weeks of uncertainty and fear and frustration: my baby is crying and I can’t help. The worst feeling. Except for one.

I took a lifeline and phoned a friend. I explained the crying, the fear, the lapping of the waves of insanity. I feared a pat response when I began, “I just feel so…”

And then, hope in the form of identification.

“Mad,” she finished.

I released a days-held breath. “Yes,” I said. “And then I feel bad about that–”

“Guilt,” she responded.

“So guilty,” I said.

“And you feel like you just want to leave,” she finished.

Finally someone knew. Because here’s the thing: we’re all sort of obsessed with hearing and telling each other that we’re good moms. Why can’t we just be moms? I’m James’s mom, and I’m exactly the mom he needs. I’m a good mom and I’m a shitty mom. I’m the whole range, because I’m great at some things and I suck at others. And not having answers? Listening to crying that I can’t relieve? Are a couple of things at which I suck.

It’s hard to write a but after that, especially right now. But…

TK’s redemption, and mine, wouldn’t happen if I were only coasting along on my strengths. If my life were one perfect Pinterest page of recipes and crafts and Mommy-nirvana. Somehow, these dark, tear-soaked moments are playing just as much into grace’s hand as the pretty ones–maybe even more so.

Grace and I have bigger goals for this family than turning out like a Norman Rockwell painting.

Last night TH lay down with TK at bedtime and I lay face down on our bed, commencing an ugly crying session complete with snot and gagging. And after my well of emotion ran dry–after all the anger and resentment and sadness and frustration was emptied with my mascara onto the bedspread–I was still. I felt spent, and if not better, then..well, I just felt. I felt deeply, and I felt more than frustration and anger. In the quiet, with sobs subsided and TK cooing two rooms away, I felt the truth trickle in, one drop and thought at a time. I realized that the ugliness feels so much more out of place when you know you’re meant for beauty, and that recognizing this isn’t negativity but awareness. This should suck. Not knowing if the past six weeks worked, not being able to immediately comfort my child, not knowing whether he’s just tired or in pain–all of this sucks and is so much less than what we were made for. And just “chin-up”ing it and trying to keep a positive attitude is not an answer so much as it is accepted etiquette. I may not always/ever have the most positive attitude, but what I do have is an ultimate hope. And that hope tells me that these ugly, hopeless-feeling moments are being worked into good. Into beautiful. Even when I’m struggling to believe it.

This morning TK’s doctor saw us. He felt TK’s neck and shoulders and in a rare moment of affection, kissed his head. He told me to hang in there. He said it’s likely a muscle spasm, and I hope he’s right, because there’s an app for that. Not to mention that muscle relaxers sound pretty good right now. Maybe I’ll share them with TK.

We walked back through the waiting room, I and my tilted-head toddler, and I glanced around at the other parents and kids fighting their own battles, trudging their own rough road. It’s so unfair, I thought, and think, about the things these kids have to go through. About the parents’ hearts that break for them. When I first noticed the tilt’s return, I felt an awful darkness whisper into my ear: This will never get better. You hoped and believed for nothing. This is your life now–IT WILL ALWAYS BE THIS HARD.

Last night, after I stopped crying, I felt a different whisper. You are exactly where you are supposed to be. The tears and fear threaten to interpret that as a threat: God has you right where he wants you. But you know what? The ugliness feels too wrong for it to be the truest thing. So I cast my lot with grace, and wait through the tears for the light to arrive and reveal more. Reveal the beautiful.

The halo comes off in one day.

It was both forever and a flash.

As we approach the removal, I wonder how The Kid will react to losing seven pounds in a matter of minutes. I wonder if it will have all worked, if he will hold his head straight as we leave the hospital. And I think about how the past six weeks have changed us beyond the physical, beyond the sponge baths and bruises and sore arms and immobility.

The thing that stands out most is intimacy.

“You can’t get to intimacy except through the door of vulnerability.” This halo has disarmed us: of confidence, of comfort, of predictability, of bath time. But it has given us so much more than it took away. We’ve been held in place together, and we’ve been healed of self-sufficiency. The three of us, held by so much more than just the three of us.

Intimacy–being reduced to what cannot be hidden or faked–is hard stuff. It pokes and jabs and scars and tears. And it’s worth it, because it’s everything. It walks through the mall with a smile that outweighs the stares. It falls and gets up as one. It crosses the finish line hand in hand, putting us in a different place from where we started. It yields gifts we haven’t even opened yet.

So here is a picture of what that has looked like for us over the past six weeks: vulnerability and intimacy set to a Beyonce song. As it should be.

Naptime. The great exhale of parenthood. The Kid slurps away on his thumb upstairs, and our family of three populates the house at once–a weekday rarity. The second winter storm in two weeks pelts ice at the windows, power threatening to go out, but for now we are heated and fed and together. Last time we weren’t. The Sis said it this morning and my thoughts echo it now, how there is thankfulness in all of us just being safe. In our biggest problem being boredom.

I feel protective of winter, the black sheep of seasons. Even as it drags on past the date a polite guest would leave, even when its gray days and early sunsets lap around the edges of my well-being and throw a wet blanket upon my attempts at maintaining a good mood, I appreciate it. I can’t imagine life without the rhythm it brings: the furor of life whittled down to a slow hum, the peace in a white landscape. Part of my appreciation stems from its faithfulness in exiting, eventually, setting the stage behind it for growth and life.

Winter is different from the rest. I can relate.

And now, as TK’s carbon headpiece peeks out from the corner of the monitor’s screen, I count how many minutes I have before he pops up, awake and ready to play. I count down how many days we have until the halo is removed–NINE!–and I know what I’m doing, hurrying time along in the way I’ve always been inclined to, moving to The Next Thing. Wondering, once the halo is off, when I should start potty-training. Which bed to buy. How to get him to drink through a straw. When he might begin to speak.

We went to a birthday party this weekend, the group one of good friends and kind faces, people who know our story and whispered the abridged version to their kids in preparation. TK buzzed around like he always does, checking out the surroundings and doing his own thing until he saw me with cake. The halo makes him different in a glaring way, a way that I’ve come to embrace with an air of defiance as we stroll around Trader Joe’s or haunt the aisles at Target: This is my boy. This is his thing. Stare all you want.

But there are other differences, too. He’s reserved. He withdraws to his own spot, sets up camp there in both familiar and unfamiliar places, and operates independently. He doesn’t warm up to people quickly. He observes–notices–everything. He likes to leave parties early.

I can relate.

I fight the urge to customize not just our home, or our life, but the world to him. Because there will be ways he bumps up against it that will hurt. There will be people who don’t understand him, even once the halo is gone. I suspect–and I have it on good authority, as one who knows something about this–that he may not feel comfortable in a lot of places. That he will look for ways to retreat to his comfort zone. That he will create worlds of his own (if I turn off the TV long enough) that seem to fit him better.

I could, of course, be totally wrong. He may end up being the varsity quarterback.

But if he isn’t–if the words come more slowly and less audibly for a while or even always, if he takes more time than most people to find his place and who he is–I remind myself that this is okay. This, in fact, is the beginning to some of the best biographies. This is what led me to New York and to writing and to this life that he punctuates, elevates, with his hard-won grin and matchless laugh, his tiny grip on my finger and his dive-bomb into my lap. These moments that are so easily swept away and missed as we glance at the clock, checking how close bedtime is, they turn out to be everything. And when parenthood threatens to be reduced to loads of laundry and a series of nos as it so often does because we are human, I’ll try to remember less the stain on his pants and more his glee at jumping into the puddle. I’ll try to remember the three days when we thought he may not walk for six weeks, and the miracle that is each jump.

When I do this, when I give each moment a name–grace–I am still prone to the bad moods and fits of self-righteousness and fear, but I am more likely to see them as an indulgence than a right. I see the choice I’ve been given. And I can give thanks for the thawing of spring, for the halo removal, for bedtime–and for every moment leading there.

Last week, The Husband pulled out of the driveway a couple of hours before The Mom pulled in. He was headed out on a work trip–to Florida–and she was headed here to hang out with The Kid and me. The next day all hell broke loose here in Atlanta and across the Southeast as Winter Storm Leon dumped a paltry couple of inches of snow that brought life to a standstill.

The day after that was when TH was meant to return and The Mom was meant to leave, but that’s not what happened. Instead, our long regional nightmare was just beginning as children slept in schools, adults slept at work and in their cars on the side of the highway (prompting my forever-question: How did they pee–OR MORE?!), and The Mom and I gave thanks for a pre-emptive Tuesday-morning fill ‘er up session at Total Wine.

Of course TH was “stranded”, of all places, in West Palm Beach. But as I heard about the ordeals experienced by so many, my typical ever-ready resentment was reduced to occasional catty comments by thankfulness that he was safe (though trapped in dirty clothes), TK was safe (though stir-crazy), and the rest of our family was safe (though running out of wine).

I remember when this happened three years ago: snow piled outside, ice locking us inside. The experience is much different with a halo-wearing two-year-old, and sans a husband.

But it melted, as snow and ice do, and on Friday The Mom pulled out of the driveway a couple of hours before TH pulled back in. The next night, I headed out on clear roads with a friend to hear one of her friends, a blogger with a ministry to teenage girls, speak at a local church. For reasons that are hers, my friend encountered a bout of nostalgia upon entering the church, and on the way there we talked about that particular kind of emotional invasion brought on by a place that holds difficult memories. For me, that place is one Birmingham, Alabama. I lived there for a decade spanning the ages of seventeen to twenty-seven, the bridge into adulthood. A bridge I stumbled over, built plans upon, cursed regularly. When a city feels like it’s become your nemesis, it’s time to leave–and that’s when I hatched the plan to escape to New York.

But it wasn’t Birmingham that was the problem; the battle was internal and I just didn’t realize it. All around me, friends were moving on with their lives in the ways I had envisioned for myself: getting engaged, married, settling down into grown-up homes and relationships. Meanwhile, I dealt with the crumbling of my self-constructed Perfect Student/Sweet Girl identity in the form of a rebellion that left me full of regrets. When you feel like you’ve become your own nemesis, it’s time to get counseling.

I look back now at those two years of counseling as a turning point. They were painful and strenuous; I confronted truths about myself that required a response, which is always difficult for someone whose dealings are conducted primarily through fear. But it was in that room, every few weeks, that I received the push I needed to venture northeast. And it was in the gardens and on the hilltops of that city where I learned that crying out is a valid form of prayer; in fact, it’s one of the most honest. My language toward God, because it hadn’t yet been informed by grace, was one of tears and whys, clinging and being forced to let go.

It’s so much harder to be all Mary about things (“May it be to me as you have said”) when Option B: The Eve Response is available (“But I wanted THAT apple!”). I suspect that a misunderstanding of the character of God may be at play?

So many of the whys have been answered now. But the bigger thing is that I’ve come to a point where I can live without the why, because the Who and the How are more important, and both are found in grace. And just like that (“just” = decades later), the journey is transformed from a solo venture marked by bouts of fighting reality into a joint trip through which I learn the meaning of Emanuel. It is grace alone that shows me how to stop seeing only what isn’t (Eve) and opens my eyes to all that is (Mary). I am not trapped; I am placed.

Saturday night, sitting beside my friend, I thought about my own extended teenage years: the insecurity and loneliness, the feeling of being trapped in a city or a circumstance. And I know, now, that it’s not about immobility but about the grace in a moment, in a season. I missed it then, always scrambling to get to the next thing, but now I am learning not about being snowed in but about being still. About the beauty that can be harvested when I’m looking for more than a lesson but instead am just looking. Waiting for a car to pull into the driveway, waiting for the halo to come off–there is life in the waiting that can be so easily overlooked. The miracle of safety, of this daily reminder that TK has not let anything keep him down, of the healing properties of just being here, with a prime view as TK becomes himself, white turns to green, and the ice just always gives way to reveal life underneath.

Remember last week when I talked about letting The Kid lead me around for a while? I felt so poetic and evolved making that observation…then, on Sunday, we went to the park. And it was a total debacle.

This halo experience, as I’ve related, has been beyond better than we expected. TK has not let seven pounds of carbon and titanium slow him down for a second, and most days he can be spotted running up and down our driveway or trying to climb the stairs two at a time. If anything, the “this hurts me more than it hurts you” principle seems to be applying here–and I have the scars to prove it: red indentations scattered across my forearms from holding him at the sink for hand washing; bruises on my chest from the forehead bolts he doesn’t seem to notice as he dives in for a cuddle; sore muscles from heaving him onto his changing table. I’m not complaining (more than my usual amount)–these are battle wounds I’m only too happy to endure if they lead to an upright noggin. And, to be fair, he’s the one with the three-inch-long incision in the back of his neck, along with a smaller one on the left side for good measure. To be clear: I’ve never disputed the fact that he’s a better person than I am.

The physical aspect of this experience always jockeyed for first-place position on the concern wall of my mind with the psychological aspect, anyway. There is the emotional wear-and-tear that comes with watching your child suffer, and wondering if any of it will lead to a James Frey-esque stint in rehab for him down the road. There’s the mind-numbing, poor-judgment-ridden, sickly nature of exhaustion. TK’s progress has trumped both of those possibilities and left them languishing in my memory. And, until recently, a third possibility was eating his dust too. But that possibility had more to do with how I handle the halo than with how he does. And I’m not quite as resilient as my two-year-old.

For most of my life, I’ve searched for a comfortable spot under the radar. I realized, after years in New York and under the spotlight of grace, that I was just afraid of being seen. And with TK’s hardware update, I was concerned about taking him out in public: the stares, the questions, the scrutiny. I was afraid of my short fuse and snarky retorts and how it all might combine into a combustible situation that left me getting Tasered on the floor of Target. But lest the ire-fueled side of my personality get too much attention, allow me to admit that I was also concerned about over-explaining our situation to strangers; about caring way too much what they were thinking; of not withering under their stares.

I was afraid of being seen, which is another way of saying I was afraid of being vulnerable.

You can guess how many effs TK gives about the stares and questions: exactly zero. I swear he doesn’t even know the halo is there. And for a while, I was immune to others’ reactions too. If not caring what people thought was cool, you could have considered me Miles Davis. Then we went to Target and this one woman gaped at us openly. Same thing at the grocery store, this time while The Husband was with us. “I’m going to put a sign on the halo that says, ‘Take a picture–it lasts longer’,” I seethed to him in Publix, my interior Department of Self-Righteous Anger on high alert. With all the major crises so far averted, I was freed up for indignation. (It didn’t help that when I was returning TK to his carseat in the parking lot, I lost my grip on his seat belt and punched myself in the nose. Hard.)

Then yesterday, TK and I met The Sis and The Niece at the park. Things started off well: TK gripped my hand obediently as we shuffled along the entry trail. The Niece had even demanded to wear a helmet–maybe she wanted a “special hat” too. So there we were: the sisters and their spectacularly-crowned offspring. Then half our party headed off to the play structure and TK and I were left to navigate some dirt paths full of dogs and runners, and I committed the Cardinal Sin against a Toddler: I told him no. You know, to KEEP HIM FROM GETTING TRAMPLED. And he had a screaming meltdown right there in the park.

It went downhill from there. TK never recovered from his offended need to choose his own path (hmm…what’s that like?), and The Sis and Niece had their own problems: as they approached us so we could leave together, I heard the words, “Well then you can have water for dinner!” In the parking lot, a disembodied voice echoed from inside a minivan, “BUT I DON’T WANT TO GO HOOOOOME!” TK did his part by plopping onto the ground and wailing.

Oh, the magical time of childhood.

Our goodbyes were terse as I hustled TK into the car and wheeled out of that dystopian nightmare called Sunday Afternoon at the Park. I explained to my nonverbal son why he didn’t have the right to behave the way he had. We got home and I handed him off to The Husband in exchange for a glass of wine. And for the next few hours, I revisited the scene in my head and asked myself what really bothered me about it. Because toddlers? They act like assholes all the time. Everyone at the park knows it. But not every toddler is in a halo, and not every mother-son duo is examined the way we had been. No flying under the radar here.

And I realized that much of parenthood–much of loving anyone, much of living, period–means being willing to remain in the tension of unrealized potential. Others’, and our own. Much of marriage means that. Much of friendship. And much of grace means knowing who does that on our behalf.

Remaining in the tension of waiting for words, of anticipating halo removal (it’s FEBRUARY 21ST, Y’ALL!), of hoping for an upright noggin, of wondering whether he’ll get a sibling, of taking each other for granted, of learning to communicate the truth in love, of caring less about what strangers think. Of trusting that grace always ensures that our best interest is the one this is all headed toward, even when we feel like we’re in the dark and the road is long and we keep getting punched in the face.

Many years ago, I read an article (it appeared either in Journal of the American Medical Association or Us Weekly, I can’t remember which) about a young girl born with a rare nerve disorder that left her unable to feel pain. My initial reaction to this story, since at the time I was in both dental school and a bad relationship and therefore knew a little somethin’ about pain, was something like, “What?! Awesome. I’m totes jeal.” I went on to read the parents’ account of why I should NOT be totes jeal, and it was a narrative that cited hundreds of injuries endured by the girl in her short life–burns, broken bones, head trauma—all because the absence of pain as a warning left her fearless in the face of danger.

I think a lot about how fear informs our lives, likely because I’ve come to recognize how far from immune I am to it. As The Husband and I faced The Kid’s impending surgery and halo season, I named my fears nightly in prayer and battled them daily in my head. None of them—none of them—have materialized. In fact, this experience so far has been (like much of life) a much different one from what we expected. Far from nursing a sullen invalid, I’ve been chasing a fearless toddler, a toddler who runs and jumps and dances through his days as I struggle to define the proper amount of supervision. He has fallen, but without incident—either he or one of us has always broken the fall with an outstretched hand. He’s sleeping pretty well, given the bolts protruding from his forehead and the fact that we’ve had to turn his crib into one wall of a fortress bordering a makeshift floor bed of mattress and couch cushions surrounded by pillows, a dresser, and two actual walls. We’re improvising.

So things are going well, considering. Which doesn’t mean we don’t still need prayers, but the nature of my own praying has changed: I’m still uttering words regarding his protection and healing, but there’s also the small matter of myself. Of how, when I am no longer distilled down to “just making it through the day” and “hospital survival mode” and “please return my child from the OR to me alive”, I tend to allow the petty things to sneak back into the picture: who emptied the dishwasher last, or how much messier the kitchen counter gets now that TK is pulled up next to it for meals, or if one of those damn bolts pierces my boob one more time…

And then there’s the Worst Case Scenario element of my thinking, evidenced by a text exchange with a like-minded friend who asked last week how it was going. I gave her the good report then followed up by asking her what it says about me that I’m waiting for something to go wrong.

She said it means we’re the same. So I’m assuming there are some of you out there who relate, as well.

I’ve been reading a gift from The Mom–Anne Lamott’s aptly-titled Stitches. And it appears Anne has also been reading my diary, because both of us spent much of our lives hustling into the next moment, attaining the next accomplishment, defining ourselves by those achievements. She writes:

I was good at being good at things. I was good at forward thrust, at moving up ladders…Unfortunately, forward thrust turns out not to be helpful in the search for your true place on earth. But crashing and burning can help a lot. So, too, can just plain running out of gas…That was the moment when I lost my place of prestige on the fast track, and slowly, millimeter by millimeter, I started to get found, to discover who I had been born to be, instead of the impossibly small package, all tied up tightly in myself, that I had agreed to be.

It occurs to me that much of growing up involves learning to be afraid, or at least learning to recognize danger and avoid it. But so much of my life, before grace had room to move, was a misdirection of that recognition–calling things “dangerous” that were actually the road to real living. My great fear was falling apart and being exposed as not being good enough or smart enough or “together” enough. But when that actually happened, I found out that I wasn’t any of those things–but rather than being the end of the story, it was the beginning. It was time to stop planning life and start receiving it.

Now that the day of surgery and the hospital stay are over and halo season is upon us, there’s a noticeable lack of forward momentum, a rhythm to our days that is less about accomplishing goals and moving past them than it is about just playing, being together through this. And I realize how much that old fear of my being unmade informs my life now, because it was when I was unmade from the person I had made myself out to be that I began to be made into the person I was meant to be. I recognize as dangerous now the things I used to cling to: worrying myself into a panic over what others think, trying to “fix” people, formatting my life in such a way as to avoid any semblance of struggle or mystery. Because the struggle and the mystery have yielded such beauty lately that it’s taken my breath away. And so I walk beside TK, who cannot look down but so often does look up, and let him lead me for a change.

“God is making us spell out our own souls.” –Oswald Chambers

I’ve been in the hospital three times with my son: the first, when pre-term contractions forced me into a thirty-six hour stay, and I lay confined to a bed with a fetal monitor attached to me. His heartbeat punctuated each moment as I willed him to stay in there and keep growing. Then there was his birth, and the extra-long stay provided by my C-section, marked by our introduction and sleeplessness and awkward feedings.

Last week our family spent three nights on the neurology floor, and once again I held my child in a hospital bed.

When we arrived at the Day Surgery Center on Wednesday, our first sight was our Karl-Barth-reading pastor, and I immediately burst into tears at the kindness and surprise of his presence. When they took The Kid back and I burst into tears again, our pastor walked down to the cafeteria with The Husband and me. We talked about the surgery and recovery as I ached to get back to our room and wait for the phone call update from the OR. Our pastor mentioned, lightly, how difficult times like these could be on a marriage. He prayed with us. Then TH and I told him goodbye and waited for doctor appearances and a returned son.

The surgery went exactly as it should have, we were told. The recovery nurse called and said they were taking TK to his room, that we could meet him there. When I heard the bed being wheeled down the hallway, I took a deep breath. He would be different, groggy and confused and weighed down by seven pounds of metal and plastic, pins and vest. I feared my own reaction–that I would be overcome with sadness at his appearance.

But they brought him in, and it didn’t matter. He was just ours. Seven pounds of healing equipment, and our baby.

Nothing we’ve done so far has worked, which has landed us here, in this device and with this recovery, because the problem was the bone. The whole time, the issue lay deeper than muscle and further than therapy or Botox could reach. And so all our searching and trying and failing has led to what I once considered the worst-case scenario.

But is it? Is it ever, if all is grace?

There were the moments in the bed, hours full of them, and the feel of a tiny hand on my back as I drifted off to sleep, coupled with the sound of TH’s breathing on the pull-out bed feet away. There was the silent meeting of eyes in the near-darkness, TK watching me, knowing the who but not the why. There was our return home, when I placed him on the floor in the only position he could maintain–lying on his back–and watched as he pulled himself to sitting, then bent over and pushed himself to standing, then grasped TH’s finger with his hand and began to walk. A miracle unfurling before my doubting eyes, victorious laughter and beauty in metal and stitches. There have been the tiny kindnesses between TH and me, the ways we have looked out for each other and been for each other when it’s so much easier for me to be against, when the mundane monotony of life so easily makes me forget that we’re on the same team but this–what can understandably break a couple down to weariness and resentment–has been knitting us together. There have been the dinners delivered and petitions prayed on our behalf, endless support lifting me above the difficulty and keeping me vigilant to the redemption happening right in front of us. I have felt it all and know it to be true:

This halo is healing TK, but it’s also healing me.

Because what could have been a period to endure has proven to be an advent of gifts, one of top of the other so that they all come crashing down in a stunning display of mercy. All the ways I’m being loved out of myself and into grace. The forced slowing down and letting go, the letting-the-dishes-wait because he needs my finger to grab and my eyes to watch. The cries in the middle of the night and the returned stares, eye meeting eye, and I know that he knows too: that this is real love, this faithful being-there. My greatest fear, the sleepless echo of the newborn days, and how does it play out? With these nighttime visits and midnight smiles like a secret between the two of us. What we will always share. What changes us. It feels, sometimes, like a do-over of the first few months of his life, when all I felt was exhausted and inept and at the end of myself. Now I know that’s exactly where I am–at the end of myself–and it’s a gift because this is where grace begins. And how gloriously appropriate that it feels like a second chance, because that’s exactly what redemption is.

It’s what redemption is, and what grace does–brings me to the thing I feared most and leaves me saying thank you. Thank you, thank you. 

I sit beside TK in the sunroom, the place where he relearned to walk and I’m relearning to love, and the brightness of the mid-morning sun strikes us both. He squints his eyes and keeps playing. Not long ago, I would have shielded my face, searched for shade. But today I sit there right in its searing glow and keep playing too.