God’s compassion is my story.

Nothing has gone typically for The Kid, not ever.

Preterm contractions sent me to the hospital at 31 weeks. He refused to budge from his breech position. His tilted head, far from being simple congenital muscular torticollis, proved resistant to both PT and surgery. His cervical spine and that first vertebra, causing him to tilt his perspective and doctors to scratch their heads. The speech delay, defined by everyone else as something that would change “when he was ready”; the insistence on sameness that I thought was just stubbornness, both originating from a word, apraxia, that I had never heard, describing a process, motor planning, that I didn’t know existed. How all of it ties in, one way or another, to the brain they had to scan to figure out the neck, the differences they call anomalies that are his normal, and our life. The nuances placed there by design. By love. No matter how it feels at any given moment.

Society doesn’t use the word normal anymore. Now it’s typical: neurotypical, typically developing. I look around and see a sea of typical, and I look beside me and I see TK: deeper than typical allows, more mysteries than predictability contains, more beauty than I imagined. I would have ordered typical, thank God my order was supplanted. By James, the supplanter himself. By the one who made him.

The differences are beginning to make sense, the dots becoming connected and the puzzle pieces fitting together. I can anticipate his responses more ably now, can prepare for tantrums and be pleasantly surprised when they’re no-shows. But he’s still followed by an asterisk, The Kid who won’t allow me to fall back on my own resolve or my carefully laid plans or the parenting techniques I decided upon before meeting him. A flexibility and patience are being demanded of me that I just don’t have, and the demand forces me to breathe; to let go; to trust, deeply, beyond myself. To wait.

Pooping in the potty is supposed to take the longest, right? He did it after a day. Peeing took weeks. It’s all still a work in progress. And he’s not just going to decide to start talking, as if he’s some recalcitrant preschooler withholding communication. None of it is that simple, nothing is rote. He’s a riddle we’re constantly seeking to solve, and the labyrinth of who he is can be trying…and breathtaking. How I repeat myself three times for him to climb into the carseat, a little closer to the edge each time, and just when I’m about to lose it he turns to me, looks deeply into my eyes, and grins widely. Knock me down with a feather, why don’t you? How he remembers where I’ve put things long after I’ve forgotten. How he knows words I never taught him. How he hears everything (please don’t let his first word be fuck). How his ABA therapist says he’s smarter than his typical peers, that his being nonverbal hides but doesn’t preclude it. Imagine that, thinks the mom who SAID IT FROM THE BEGINNING (not that she’s stubborn). How he demands closeness on his own terms, wriggling from some hugs then handing me the book and pulling me and his brother onto the chair so the three of us can pile in and read together.

What would our story look like if these things weren’t true, weren’t him?

It would be a short one.

I pushed the two of them around Target the other day, TK in the front and Little Brother in his carrier in the back, and I paused briefly to pick up a book whose title caught my eye: Everything is Going to Be OK. I flipped through, saw the inspirational messages, the pithy quotes rendered as art. It was cute. It was, maybe, encouraging? It was the kind of thing I would have loved about ten years ago.

Wouldn’t cut it now.

Nor does the Church of Positive Affirmations, of Here’s Your Problem and How to Fix It in Five Alliterative Points: Weekly Edition, the latest self-help tome or behavior-modification “theology.” We’re beyond all that now. We’re in what some would call the weeds, but that’s only because they’re dandelions and not everyone can yet see them as flowers. We’re in an upside-down kingdom, a place of paradox, where a huge spread of food isn’t a meal but a wafer dipped in wine satisfies all week. A spot where a book packed with one-liner affirmations is trite but the voice whispering one simple phrase to my soul out of “nowhere” at the end of a long day–I’m taking care of you–freezes me in my tracks and leaves me tear-stained right there in the bath. Where my bookcases still sag with all the volumes I thought I needed to shape up, to know the secrets, to be “together”–while the one verse at the end of the hymn on Sunday was, I’m told, scrawled on the wall of an Eastern European mental hospital–

 Could we with ink the ocean fill,
And were the skies of parchment made,
Were every stalk on earth a quill,
And every man a scribe by trade;
To write the love of God above
Would drain the ocean dry;
Nor could the scroll contain the whole,
Though stretched from sky to sky—

and it hits me, for not the first or last time, that it’s often “the least of these,” the dandelions, who are the true holders of the keys to mystery.

I tape the verse to my steering wheel, read it over and over. It starts to stick.

TK, he watches the creek trickle by one afternoon, and there are canyons that have been etched by currents persistent as this: the constant pressure of water on stone, over and over, moment by moment. He pulls me to the edge of the bridge so he can have it to himself to run back and forth, over and over. Later he brings me the ball and I throw it, and he pats his stomach, asks for it again, over and over. He wants both swings, every time, one then the other. The speech therapist says that this is how it will happen–not by him “deciding” but by constant repetition, over and over, songs and sounds and words, and one day language will break through, will be born from this endless rhythm of sameness. And I think back to school, to the Krebs cycle and cranial nerves and Spanish verb conjugations, and why did I ever think there would be another way to learn than by over and over? How did I not see that I was being taught too? How did I call monotonous what is actually miraculous? The method of unceasing practice, of the unfamiliar being made familiar being made routine? The grace that is in this: that this is how TK learns, that this is the sum of our days–the over and over–and this is love being spoken into my heart, so that it can birth more love. Shallow creeks to rushing rivers, sidewalk cracks to deep gorges.

It took me so long to articulate the fear: that all these differences mean there is a place inside of him that is unreachable to me. That there is a place so deep that he can’t feel my love there. This fear is what left me bereft, sad beyond description. Because it seemed, at the time, that he wasn’t listening, didn’t hear, and so…that he didn’t know? That he would have spots of his heart that were untouched by my love? Please, God, no.

So I kept telling him. And after so much repetition, he turned to me. He stared into my eyes, at my lips. And he placed one finger on them, and I said it again. And again. Over and over. He wouldn’t take his eyes off me, or remove his hand from my face. And this is what is meant by a love that will not let us go; this is how love is taught and shown–not in the heady days of courtship, the drama of wedding planning and the excitement of the first dates, but the day-after-day of it, the again and again and the over and over, and I feel our typical places grow atypical, our shallow spots groove deeper, and the possibility that we are unloved, that this is all by accident, it just seems more and more…unfamiliar.

There was a time when I believed the dandelion was a unique and beautiful flower. This was around the time when I blazed through the county and state spelling bees with a ritual tic upon the completion of each word; around the time when a misplacement of the seam of my sock too far to the side of my foot made me so uncomfortable and anxious I would remove my shoes and fix the problem; around the time when the sound of certain words made my skin crawl.

Then I grew up and stopped believing in things like dandelions and Santa Claus. And when parents told me their children had sensory issues, I didn’t believe that either, because what a convenient excuse for a kid’s bad behavior, right?

I took The Kid shopping for summer shoes last week, and let me tell you how glad I am that this is only a seasonal chore. We walked through the mall together, a hand-holding pair, and all was well. His voice carried a tune that bounced off the walls, and he held his arms out for me to carry him on the escalator–because who wants to be sucked down through those grates by the monster who lives underneath? Duh–and we headed into Stride Rite, and for an instant I thought that maybe he would be cool with it. Maybe he’d outgrown his aversion to–his screams interrupted my thoughts and I picked him up again, his legs flailing as we approached the boys’ section. The lone employee, helping another customer, turned to us. “Aww, man, what’s wrong?” she asked. I shook my head at the impossible nature of that question and just replied, “He’s not a fan.”

Two pairs of shoes and a bucket of tears later, we headed out the way we came in. He sang, I carried him up the escalator, and we walked to the car, hand in hand, the battle endured and our scars shared.

We are in this together. But it took a little while to get here. For me, about thirty-seven years.

When TK received his diagnosis, I remained calm for a couple of days before falling apart. A litany of reasons accompanied my breakdown–some rational, some panicky: the doctor observed him for all of thirty minutes; his report contained several (in my mind, huge) inaccuracies; I later heard from a professional in the field that this particular practitioner “diagnoses everyone”. It doesn’t matter, I thought, and was told. He’s still him. But then I jumped ahead to the rest of his life. Would he be treated differently? Would he ever be happy? Would he spend his time on the fringes?

Because I know something about the fringes. When I was a kid, they didn’t give it diagnostic names so much as they just called it weird. I got that a lot. I wondered all the time if something was wrong with me, why I didn’t fit in, if there was a place for me anywhere, if I was different from everyone.

I’m happy to report that I was. That I am. That it’s why I’m sitting here today, writing this, and that I suspect it has something to do with why I’m TK’s mom. I’m starting to think that this whole “being different” thing may be more common than people admit. And that it just may be the biggest and best gift we’ve ever been given. But it sure as hell didn’t come wrapped that way.

Dealing with a diagnosis that isn’t a broken bone, that isn’t strictly quantifiable, that is surrounded by my own doubt and a general uncertainty and a varying amount of ill-fitting-ness depending on the day, means living life in the gray area that I used to pretend didn’t exist. In the mystery that is more suited to children than to adults who know everything. Because I didn’t know anything before I knew everything before I started learning a few things. And I’m learning those things not in a classroom or from a book–but in shoe stores and on playgrounds, in conversations and quiet moments.

“I wish you could see how far he’s come,” TK’s preschool teacher confided yesterday when I happened to–happened to, right?–bump into her, and she told me about the girl who’s become his buddy, how she leads him by the hand (when he lets her), how they scooted across the floor on their butts and ran back in a circle to do it again. A professional may tell you that it happened because TK needs that additional sensory input to get a better idea of where his body is in space. I briefly think about that before I dwell on the part where he has a buddy who sits beside him when I can’t, and the teacher sees the tears in my eyes and we both love him, and if this is a gray area then it’s a pretty damn colorful one.

I remember when TK was younger, a year and a half maybe, and he lined up his blocks and I thought how cool that was, that he had this unique way of playing with them, that he did his own thing. Then I read that “lining up” toys was a red flag, and I let an internet list define my outlook, and every time he lined up his blocks I felt a mixture of sadness and fear for what it all meant. Then one day recently I watched him, purposeful and attentive, as he lined them up and I forgot how I was supposed to be scared and sad and for an instant I returned to my original reaction: That’s so cool. Then the thought hit me that I needed to recalibrate my response to “Sad” and that was just it, you know? The rebel that was born in me after the rule-following approval-seeker was vanquished, she rose back up and said, “Oh NO. Just FUCK THAT.” And I let it seep in, how this gift he has is just that–a gift, not a red flag–and this is not us making the best of a bad situation, this is us recognizing a beautiful life. A life unfolding at its own pace and in its own way. This is us deciding to believe again–in the more, in the beautiful, in the not-as-it-appears.

Which is why, when he sings loud enough to shake the walls of the mall, I don’t glance apologetically at the fellow shoppers. I sing along with him, his echo and choir. And when he finds a quiet spot off to the side, I sit there too. And when he lines up his toys, I think about engineering and architecture, not diagnoses and checklists, and I tell him how great it looks. How much I love what he’s made. I’m not in denial–I’m in acceptance. Acceptance of him, and of redemption and beauty and fullness looking like more than a diagnosis. And playing out beyond today. Because where we are now, in the gray area, is a spot where he needs a duet partner and a seat buddy and a playmate. CHALLENGE ACCEPTED. I’ve been headed here my whole life, as grace undoes my agenda, loosens my grip, changes my plans, and puts a gift in my lap. It took awhile, but I’m back to seeing flowers.

Rome wasn’t built in a day, and The Kid wasn’t potty-trained in three. No matter what the books said would happen–and I read a few of them.

I’ve been dreading potty-training for a while now, and have put it off as long as possible: TK is three-and-one-third-years old. I was waiting for him to talk. Waiting for the weather to turn warm. Waiting for Jesus to come back and take us all home, rendering the process unnecessary. I waited myself into tossing and turning and waking up to middle-of-the-night toilet-ridden anxieties. It got out of hand, as things do when I attempt to control rather than trust my way into peace.

Last Thursday was the day.

Coming as soon after Easter as it did, the time arrived with the Biblical pairings I found so easy to assign: Day One–disaster and hopelessness. Day Two: darkness and mourning. Day Three: resurrection and celebration! Along with these overtones, I surreptitiously and silently attached my own agenda to the proceedings, though outwardly I told anyone who would listen that I had no expectations; we were just going to “give it a shot” and “see what happened”. I was being breezy, you see.

I’m not breezy.

The first day revealed, though, what I am. It revealed all the things in which, and places where, I stow my hope other than where, and with Whom, it should be. It revealed my constant inner hidden agenda and secret expectation that everything should go the way I planned. Because old habits? They die so f-ing hard, man. Might I refer you to the title of this blog? And to the lessons it represents that I’ve been learning my whole life?

No dice whatsoever in the first twenty-four hours. Lots of pee, however–on the couch, the rug, the towels placed over the couch, the training underwear. And one memorable dump outside that I caught just in time to get it spread all over my arms as we raced into the house, TK screaming in my arms because, really, who wants to be rudely interrupted mid-stream when doing their business in the grass like a dog to be hassled indoors to proper plumbing?

By the end of the day, I was run ragged with no visible results. TK was confused and belligerent. I should mention now that I was going on a week since nursing Little Brother for the last time, which added the fun bonus of wearing sandbags FULL OF PAIN on my chest. By the time The Husband arrived home, the only form of communication I could muster was to alternate between shaking my head tearfully and stomping between rooms, muttering things like “I suck at everything” and “I hate myself.” I went to bed with these and darker thoughts, my inner monologue talking me down a twisting hallway full of lies and despair. Over potty-training, y’all. But also…not. Because it’s never just that.

It was ugly. It was scary. It was hormone-riddled. It was revealing.

Overnight, I leaked twenty gallons of fluid through my shirt and slept, and when I woke up the next morning–the Second Day of Potty-Training, traditionally known for darkness and mourning,–I felt slightly ridiculous. Chastened, gently. I had treated myself horribly, had reduced myself to the sum of some arbitrarily-chosen accomplishments, had equated my worth with a to-do list. Again. What was fun this time, though, was that I carried my kid along for the ride. And the other kid. And my husband, who was likely googling “mental health” and sleeping with one eye open. Something had to change.

TH came home early the next day, probably fueled by a desire not to walk into a scene from a Lifetime movie, and I didn’t pull myself up by my bootstraps or hold my chin high or resolutely change everything about myself as much as I just decided to let go. I ain’t got no bootstraps left at this point, anyway. One of the books I had read mentioned potty-training as a bonding experience for mother and child, and at some point during the day before I had laughed bitterly and tried to find that writer’s address so I could set a bag of flaming dog crap on her doorstep. But today I opened my eyes to TK, sitting there in his training pants all confused as hell, and I was his shadow. But not his results-seeking, achievement-oriented shadow–or my own. I just sat with him, which I’m beginning to learn is truly one of the most loving things you can do for a person, and we played. We sang. He pissed the pants and the floor, sure, but we cleaned it up and kept going. At one point LB barfed up his lunch onto the couch and a second later TK unloaded his bladder one cushion over and yes, I cried a little, but more importantly, I didn’t yell and everyone made it out alive. And then TH got home and I put LB down for a nap and my #precioushusband gave me an hour to watch guilty-pleasure TV and one of the characters was giving birth, and when she cried out “What am I being punished for?” I just laughed and thought, “Wait for potty-training because there is not epidural for that,” from a slightly less tenuous mental spot than the day before because look at me and my sense of humor and absence of suicide threats! Progress!

This was when I realized that the joke was on me. Because I was the one, it seemed now, who was being trained.

I don’t know why some things feel so much harder for me than they seem to for other people. Maybe those a-holes are just lying. But even if they aren’t, the fact remains that few ventures in my life–okay, no ventures in my life–are free from over-thinking and over-emoting and over-doing. And I forget about grace, oh how I forget about it, all the time. Even though I write about it every week, even though it has saved me more times than there are numbers for, even though it’s the air I breathe. That must be so frustrating for the one who is its source.

But I’ve learned, and I keep learning, that though I try to shield myself from these all-consuming emotions–though I try to protect myself from the breaks and failures that come with just being alive–something always steps in: grace, dressed as hormones or brokenness or literal poop on the floor. And it is never not the answer, for myself or others. It is never wrong to show some grace, to receive it, to empty the crap from the pull-up or let go of the agenda that drowns me and flush it all down.

There was one poop in the potty over our training period, and it was met with great fanfare and rejoicing by TH and me. TK turned to us from his perch and stared, all, “What the hell? I’m watching Mickey.” There are celebrations that I’ve missed because I was looking somewhere else, too. But I didn’t let him miss this one. I shoved the cookie into his hand, I told him how proud I was, I hugged him mercilessly. The third day came and went with no finish line in sight, and I wrote off the weekend as an introductory course rather than the Monumental Self-Defining Life Venture I had (apparently) deemed it before. There are more cookies, more pull-ups, more accidents, more occasions for cleaning and rejoicing. There will be more tears too. I’ll say some crazy things and be forgiven. We’ll all get to know each other a little better, driven deeper into relationship and love by a grace that outlasts every meager time allotment I give it.

It’s a Saturday morning, and I’m sweating by 6 am.

The Kid, usually bouncing out of bed at the first sign of his brother’s coos and my feet stumbling to the nursery, required prodding this morning–socks yanked onto unwilling feet, toothbrush forced into fighting mouth, eyes squinting against the unwelcome light. You and me both, buddy, I think, maybe say, as The Husband carries Little Brother down the stairs behind us and our family unit populates the kitchen before the sun has risen.

I had woken over an hour earlier, my body having become a reliable timepiece lately, especially before big events that keep me waking throughout the night until I finally give up, wave the white flag from my bed, and admit that my day has started. I had crept down the stairs and into the dark family room, flipped on the coffee maker and had my breakfast then so that I could at least appear to go without it in solidarity with TK once he was up. I had poured myself onto the couch, cracked open the book, and looked for promises. Assurances that everything would be okay, maybe even a bit more specific fortune-telling. I had prayed, familiar requests for safety and recovery and direction to arise from the forthcoming images, magnetic fields and radio waves circling his still-small but ever-growing body for the third (or was it fourth?!) time in his three years. I had prayed, and I had remembered what I wrote to her–the one who doesn’t just say she’ll pray for you, but does it right there in her emailed reply in a way I just haven’t mastered (or given in to?) the vulnerability to do yet–how I had written that I don’t have to be anxious and worried and scared, but…is there a but to that? Because I feel like I’m living in the but more than in the yes lately.

So the biggest guy and the smallest guy in our house see us off, and TK and I back out of the driveway into the inky blackness of what, I hope, is the darkest before the dawn. We catch every light on the way as words swirl around inside my head, Easter-edition-style: He who did not spare his own son. Plans I have for you. All things work for good. Words ingrained over years of sermons, endless Sunday school classes, that had never graduated from my head to my heart–the downward yet upward trajectory of such matters–until I needed more than a needlepoint-friendly interpretation to get through the days. Days of rebellion and failure, days of confusion and pain, days of wounds I brought upon myself and scars from just living in this world. He who did not spare his own son. I had never known the weight of that, not until three years ago. My own son sings from the backseat.

We arrive at the hospital and make the rounds through registration to radiology, the darkness outside still lingering through the windows. They put the pulse ox on him, take his blood pressure, place the IV. He fights, I hold. He cries, I cry. He sweats, I sweat. My grip remains.

They let me place him on the table and kiss him before walking away, the part where I can let the tears flow because my back is turned to them. I head back to “our” room, one of too many we’ve had over the years (my personal opinion). I sit down in the vinyl chair, look around and wonder if this could feel less prison, more sanctuary. I sit still on a Saturday morning for the first time in a long time. I put on the fuzzy socks I thoughtfully packed for myself. I eat a lukewarm biscuit from the cafeteria. I read this, and laugh at grace’s sense of humor, giving me this still time to read up on what it really means to rest.

This is my vigil.

I think about how my life, I, won’t be marked by rest if I don’t get rest. About how there is rest for me, often in the same places where there is joy, but…I never have time for it? That but again. I think about the vigils I keep, the waiting and watching I do that is more about control than rest. I think about he who did not spare his own son. About how there is one who keeps a vigil for me, always, and how that one is about love–like the one I’m keeping now. I think about how it is only grace that can make my watching, my waiting, my vigils, restful. About how I so often want a fortune-teller and what I have is a truth-teller: grace whispering in my ear, making promises I could never earn that it will never break. Not promises about a specific outcome, but promises that transcend every outcome. Promises of a beauty that includes what the world calls not beautiful; promises of never being left alone in this, even in a room where I appear to be just that.

A nurse walks by my open door, carrying a swaddled newborn into the MRI chamber where they’re finishing up with TK. “There’s always someone worse off, isn’t there?” she says with a pained smile.

They wheel him back in.

We leave a half hour later, after he has proven he can keep food down by shoveling Goldfish into his piehole at breakneck speed, and I pull him behind me in a wagon–the same kind of wagon that carried him and his halo and his IV a year ago. We wheel across the floor together, headed home, and through the windows I can see that while we were back there the sun came up, is shining brilliantly. I see it now, but…I already knew.

Stop me if you’ve heard this one before.

“I’ve heard it described the following way by parents of these kids,” the speaker began, his voice amplifying through the microphone and across the assembly room of dentists, and I sat there next to a friend from residency and considered how, when I had booked this course online, there had been no diagnosis yet, just the fact that these kids fall within my realm of professional specialty. And how, now, there is The Kid and all that’s going on with him and that I might be one of the people he’s talking about–the parents of these kids. And I listened.

“It’s like if, all your life, you had wanted to travel to Italy. You’ve dreamed about it, you’ve researched it, you’ve looked at pictures and read books. And finally the time comes when you’re able to make the trip. You book your tickets and plan your itinerary down to the smallest detail. You climb aboard the plane and endure a flight that’s smooth but for your impatience to land already. And when you do, and you’re exiting the plane expecting to  see Rome, the flight attendant wishes you farewell with ‘Welcome to Holland.’

“You protest. You’re supposed to be in Italy! You never signed up for Holland, and you explain this to the attendant, but nothing can be done: you’re stuck in Holland. While you try to book a flight to Italy, you receive pictures from all your friends who are there. And you finally realize that you are not going to Italy, but that if you don’t let that go then you will miss all the beauty that Holland has to offer.”

Greetings from Holland, y’all.

I’ve threatened so many times to drive away: in the heat of battle, when I felt as though the tantrums and the newborn cries and the dinner preparations and the floor- and butt-wiping were all falling on me (they weren’t). I’ve hissed it in the middle of the night, when one woke up and then the other, that I would just get in the car and leave, I swear, though I never did. Until the morning that I did. And as I went over the schedule with the nanny one last time (of a dozen times) and passed out kisses one last time (of a hundred times) and pushed the gear into reverse and drove away from my home and my kids, there was not so much a feeling of freedom as there were tears. Ugly tears, and lots of them. The whole way (and one missed turn) to work.

But there comes a moment when there are just enough tears to wash the eyes clean, to clear the vision and sharpen it, and when that happened I looked out the windshield and realized I was headed east. And on that highway in the early morning, the sun rose to greet me, accompanied by every hue of the rainbow: grace putting on a show yet again. Giving me something else to look at. I was reminded one more time (of countless times) that I’m not alone; that I’m remembered; that I’m beloved. 

I don’t know why that always surprises me.

The next week, I circled the parking deck ten times until I found a place, an hour late to the conference where I would hear about Holland, and as I rushed to grab all my necessary gear (ticket for entry, map of the complex, Kindle with potty-training book, magazine) and removed the cabbage from my bra, I glanced up. (It’s always up!) And from that eyesore of a parking deck in downtown Atlanta I beheld a beautiful view: lush green, buildings and homes and roads snaking all around, one of which would lead me home in a few hours. And I was surprised–to see beauty from there.

We carry the diagnosis around with us for insurance and access-to-therapy purposes, even though it doesn’t quite fit into any of the bags I use, and I read the doctor’s report and it was representative of my son in a way similar to how the Titanic was unsinkable. In a way that, when I finished it, had me yelling out for The Husband and ruing the money we had spent (thanks for the Amex points, I guess?) and reciting the litany of inaccuracies I saw. But we email the report and carry the diagnosis to the meetings and the evaluations and the screenings and appointments. And I’ve gotten used to the exclamations uttered in surprise: “I’m not seeing a lot of evidence for that–just look at his eye contact, and the way he interacts with you! And you said he does what with his brother?” Or, “He knew his letters and numbers when?” Or, “He’s really catching on to this–I think we’ve moved way beyond where I thought he was.”

And they’re all surprised, which could be kind of insulting, the low expectations and all, but really? I love it. I love how he’s just one big surprise after another. I love it. But also, it’s hard.

We were outside the other night, Little Brother sleeping in the monitor beside me as I sat on the porch swing and watched TH and TK wrestle in the front yard. The grass is lush green and the buds are popping out on the trees and the shoots are poking through the earth. “I always forget about them–how many there are. That they keep coming back,” TH says, and I know what’s coming because I do the same. “It’s like a surprise every year.”

It feels like we’re in a place now where the light breaks through in spurts. I told my friend about it, the one who knows marriage and two kids and weaning and sarcasm and Jesus like I do, and she listened as I said that I don’t know if it’s hormones leveling off, or the waiting for him to speak, or the uncertainty of trying to find a school and a place for him next year while wondering about all the other years beyond that? If it’s all that plus my own erratic sleep and TK’s recent cold that’s kept him up and, you know, life? If it’s circumstantial and passing, or substantial and ominous? If it needs riding out or counseling or medication? All these possibilities followed by question marks. And she talked about joy, about how when it goes missing then it’s time to set about recovering it, because here’s the thing: it’s ours to have.

I think about how some things have always been harder for me, and she knows it too, and I think TK is there even now: the living inside our own heads, the awkwardness around others, the feeling of being different. And out there in the yard, when TH mentions everything that was just waiting to pop back out, reliable and true, I say that I wish we could see what it looks like down there in the earth–all that life just waiting to erupt.

Then I realize that we can. It’s where we are.

So I don’t know if the occasional sadness is circumstantial, your honor, or more, but I do know this: that there is a place, deep down in the soil, where life’s first seeds get their start. Where the rain can pound mercilessly, painfully, and also be nourishment. Where believing is the same thing is knowing. And that this is where life, where glory, is: not in the light and easy shuffling of feet through the sunshine but in the dank brown of earth, in the three-days-dark tomb, in the moment just before the sun rises when every color shows up, sprayed across a waiting sky by a grace that isn’t afraid of the dark.

“Today I had a thought. What if I…what if I had never met you?“

There are moments when my brain does a time-travel trick, and I find myself back on the streets of New York: emerging from the close heat of a subway station into the human traffic of Soho, trying to pinpoint my location by finding Lafayette; running past the back side of the Met on my way to circle the reservoir; claiming my nosebleed seat as the orchestra’s strains mark the beginning of the ballet. These are pre-The Husband, pre-The Kid, pre-Little Brother thoughts–pre-bottles lining the sink, pre-backaches at bedtime, pre-pre-dawn wake-up calls. They’re foreign and yet so familiar: I can smell the nuts warming in the vendor’s cart on Fifth Avenue. They’re a thousand miles and a lifetime and one memory away.

These tricks of my brain, I don’t know if they’re momentary lapses or escapes. Either way, they’re not my reality now, though they were then. The other day, though, I imagined an alternate reality to my Now-days: a reality where TK was born with no tilted vertebrae, where he was speaking on time, where we had never seen the inside of a waiting room other than his pediatrician’s. I let the thought creep in further, the what if? of it float around my head: a world in which I didn’t know which levels of the hospital parking lot always have free spaces, what department resides on each floor of the medical building,  where to find a bathroom in every building on Meridian Mark Road.

What if The Kid had never been in pain beyond a skinned knee? What if he never knew the feeling of an IV in his arm? What if he had never been poked beyond a tickle, prodded beyond wrestling with TH?

Intoxicating, the idea of a smooth ride, an easy road. And also: not us.

Grace intervened in my imaginings, and I know it to be grace because my default setting is not optimism. I don’t have a backup generator within me that pumps Pollyanna-isms into my veins. But the beauty of what is began to eclipse the allure of what if, and I looked to see it.

Leave out all the waiting rooms, the doctor visits, the screenings, and I wouldn’t have gotten to hold his hand as long, wouldn’t have had the extra naps he took on my chest and in my lap. I wouldn’t have had as much time to pick up on the things that make him him, the ways he behaves differently around those who don’t know him well, the smiles he reserves for TH and me, the sound of his purest delight and deepest despair, the symphony that composes his language. The rides back and forth, the minutes that add into hours, and his voice in the backseat singing us home. The way he spooned me in his hospital bed in the middle of the night, giggling and poking me with seven pounds of hardware on his head and tubes coming out of his arm. I wouldn’t know his strength, and I wouldn’t know mine.

I wouldn’t know ours: all that TH and I can make it through, without the tense discussions and insurance calls and division of labor; the glances that speak words. Holding hands used to be an act of flirtation; now they are a bond of iron. We have crossed the thresholds of hospitals and operating rooms and doctor’s offices together, heard that the surgery will happen and that he made it through okay and that the pregnancy was not viable and the hands have held a little stronger, a little more tightly each time.

I’ll never fully know, this side of eternity, how it all plays into who we become, who we’re meant to be. I only know that grace promises to make it beautiful–promises that it’s being made beautiful, and there are moments when I get a peek at the process and have to say thank you, because…I believe, but you know? Help my unbelief?

TK, headphones astride his noggin, is pushing a cart full of weights down the hall of a medical building while I follow with LB in the stroller and every now and then he turns to grin and pause for the applause from me and his two therapists. And the girl in New York trying to find Lafayette would have been so afraid. She would’ve taken in the therapy visits and the diagnoses and even the nightly backaches and gone running further than the reservoir. She would have–she did–roll her eyes imperceptibly when parents mentioned sensory issues, when they explained tantrums as a result of endless doctor visits. She would have shaken her head in denial at the possibility that the research papers and the books would come to life as flesh and bone with her heart tied into every cell.

I know she was me, but that she wasn’t all of me. I know that life isn’t either/or but that it’s full of beautiful nuance and terrible complications and that all of it joins together to lead us to who we become. I know that the next time I walk the streets of New York, it will be as a visitor who knows the feel of their hands in hers, the sound of their laughter, the smell of their skin, the shape of their smiles. I know that I wouldn’t be me without all of it, and as much as I want to curse the needles and the scalpels and the nights that got us here, I can’t–not completely–because he turns from the cart, locks eyes with me, and the smile I know by heart lights up his face–and here we are again, being us.

One sees clearly only with the heart. Anything essential is invisible to the eyes. —Antoine de Saint-Exupery, The Little Prince

I was a little early to pick The Kid up the other day, so I hovered next to the closed door of his preschool classroom and peeked in, a stolen moment plucked from all those I miss while he’s at school. One teacher–the one we sometimes see at the playground, the one who said “We just let James be James” and shrugged good-naturedly, reminding me of that quote I read somewhere about how shrugging our shoulders is the beginning of wisdom–she was sitting beside the monitor of the computer, talking to the kids facing her. I scanned the group for TK and did not find him. Then his head appeared in my line of vision, bobbing around the perimeter of the kids’ circle as he ambled about the room. He has never been a fan of circle time, that one–and I’m starting to understand that his movement is a part of his learning, a part of his observing. Because he’s showing me lately that he actually sees it all, and more.

His other teacher spotted me spying and grinned, coming over to the door. She invited me inside as I issued apologies for disturbing the class and explained that I had been watching my boy. She turned back to me. “Let me show you what he’s been doing!” she exclaimed, and it was with a tone not of displeasure but of discovery. She led me to the toy kitchen in a corner of the room and pointed out the microwave door, with its square window cut-out, and demonstrated how TK likes to watch the lesson through the window. “He watches us and sees everything!” she continued, an exclamation point punctuating each remark. “He just wants to see it from there!”

I have prayed, pray daily, for a tenderness within the hearts of those who come into contact with TK, an appreciation of his differences. We did not find it at his former school, which contributed to our getting the hell out. I’m old and cynical enough to know that he will not be met with exclamations at every step; that not every face that greets his will light up as if happening upon a new land. But I’ll be damned if I don’t look for these people and hold on to them when they show up. And I’ll be damned if I don’t remind myself each moment to be one of them myself. I’ll be damned if I do anything but celebrate him for who he is.

Speaking of celebrating–that was Friday, which is a great day to open a bottle of champagne, and that’s what I did that evening. The Friday before had consisted of wall-hitting and frustration. But this week? This week was different. This week was getting down on the floor behind him, facing the direction he faced, and seeing the things he saw. This week was a glass of sparkling and a glass of red–because sometimes I do my best work two glasses of shed anxiety in–and the three of us on the closet floor wrestling and going over numbers and opening and closing the doors of his farm and watching the light from the window dance across plastic and wondering why I don’t do this more often–look at the world from his point of view. Because you know what? It’s beautiful down here.

There was a story last week about a mother who was told, moments after delivering him, that her boy twin had died, and her reply was Nope. So she and her husband held him for two hours as the doctors and nurses and the rest of the trained staff stood nearby, whispering and shaking their educated heads, and then. he. MOVED. There are things medicine tells us, and believe me–I’ve read the books and followed the rules and worn the coat. I’ve whispered and shaken my head. I’ve been in that part of the room, in that circle time. Then my boy came along, and with him my new heart and eyes, and the invisible parts of the world opened up and revealed themselves to me as soon as I looked, sometimes just in shadows and glimpses, but enough to let a light in that had never been there before. And I realized that those who tout medicine as the highest virtue or science as a flawless god, as their only, they don’t get to see the rooms of mystery, the view from the cut-out. They don’t get to feel the discomfort of not knowing that comes just before, or sometimes with, the thrill of maybe, the triumph of those first stirrings of life, the warmth returned by a now-beating heart.

That mother who refused to give up on her child, she was just recalcitrant. Until…she was right.

We talk about regrets, but when I look back I know that the moments I wish I’d done differently are the ones when I didn’t trust beyond what I could see. The times when I’d only believed in what I controlled. The experiences when I doubted the goodness of a plan that wasn’t mine. But the treasures, I read, they come in darkness, and the hoards, in secret places. The ways show up in the wilderness–and the rivers, in the deserts. Haven’t I been nourished by the water there? And by nourished, I mean kept alive: heart beating, breath moving.

Down on the floor, behind the body that grew within me, tiny hands opening doors and windows–this is the scene of my conversion. Voiceless, he pulls me by the hand and asks me to see what I can’t. These places: the dimly-lit patches of carpet upon which spill the last embers of sunset; the corners of rooms where few visit; the hospital bed filled with three (count them! THREE!) beating hearts? These places are where life shows up.

I keep getting asked to see what I can’t. And the parts of me that protest, saying the light is too dim or my eyes too weak, they are being quieted and taught and retrained, because I don’t find what is here; it is revealed. Grace leads me by the hand, whispering “let me show you,” and together we venture forward into the mystery.

We must somehow take a wider view, look at the whole landscape, really see it, and describe what’s going on here. Then we can at least wail the right question into the swaddling band of darkness, or, if it comes to that, choir the proper praise.    –Annie Dillard

One winter day during my last year of living in New York City, I was not ready to sacrifice a Central Park run just because of a blizzard. I reasoned that if conditions were bad enough, I’d just cut the run short. I dropped by the gym and threw my stuff in a locker, then headed back out, past the employee at the front desk who did a triple take and cried out, “Are you serious?!” I shrugged, praying I wouldn’t return on a stretcher, and made my way through the flakes to the park.

When I got there the snow was falling harder and piling up everywhere: the trees, the walls, the roads. I figured this experiment would end one of two ways, and I was filled with self-doubt about it going the good one. That doubt was fueled by what, in good conditions, would have been a plus: a near-empty park and paths to myself. Then a lone figure appeared. His steady gait and weather-proof gear identified him as a fellow runner, and as we passed each other we exchanged a grin of solidarity–sort of the “You, too?” moment that C.S. Lewis wrote about. The world at that moment felt sparsely populated yet so full of possibility, and I finished that run with a sense of accomplishment (and hope–I was training for a race) I’ve rarely ever felt.

I learned not to discount the hard runs, because sometimes they carry the best stories.

Our world these days has in many ways become smaller in the sense that it has narrowed down to a short list of priorities, most of them involving how to get The Kid the therapy he needs to draw out his full potential during these young and formative years. But as we’ve limited our focus, I’ve realized that this new area we inhabit reminds me of Manhattan and its 23 square miles: small, yet full of everything we need. Support shows up in the bold lines of email inboxes, in the ding of a message on my phone, in the “I’ve been there; here’s what helped” advice of other travelers. In places I didn’t expect or didn’t know existed–and there’s a lot that I didn’t know existed.

There have been moments of triumph and moments of seeming defeat, and they often come mixed together. Last week a friend brought her three-year-old son to play with TK, and they played more around each other but for a high-stakes chasing session near the end of the visit. During a quieter moment, she shared with me what a difficult time she had experienced during the newborn period with both of her kids. Like I know anything about that, right? “It’s like I had the selfishness beat out of me,” she described, and I was nodding so hard I thought my head would topple off, because Oh. My. God. YES. And here we are again, facing uncertainties that take me back to that time just as Little Brother is coming out of it, and this new world threatens constantly to undo me: playdates that remind me of how much easier it would be for us and TK if he spoke; birthday parties that amplify the differences between him and other kids his age (he wanted no part of the group picture–boo; he did sit at the table with everyone for pizza and cake–yay!). Feeling like the differences are so much more plentiful than the answers and wondering if those differences will one day dissolve or just keep following him. Feeling overcome by it all so that, on that Friday after the birthday party, exhausted and spent, I pull an Andy Bernard and hit a wall–literally and figuratively–and The Husband takes over with bath time and, in the spot where things felt most bleak, now there’s grace being slowly revealed.

He tells me that we’re both going to lose it sometimes, reach the end of ourselves, and it’s another of those moments when the world that felt so small and lonely a second ago begins to open up; the air comes in and with it, the light. So I walk back into the bathroom and nod my head, yes I can take back over, and I kneel down beside the tub and take the washcloth in my hand and bathe TK. As I run the water and wash off the soap, I feel myself being washed clean too, being baptized into this new life and world. I am convinced now, hope seeping in, that I will look back one day and see it all as gift and I ask myself: Why not start now?

I’ve been shrouding the light with my own agenda for too long–setting goals and expectations according to my own limited perspective, independent of the beauty being revealed around me. As I open my eyes to it, I see a world that is not smaller, a view not more narrow, but a widening of the former life to include grace I did not account for then. And when I make room for that grace, I find that the dimensions are not just wider, but higher and deeper too. The colors more vivid, the language more descriptive. If bath time can become a scene of baptism, then I am not being beaten into a new world, but born into it. Loved into it–into the place I was always meant to live, into the person I was always meant to become.

And so is he.

Wide, so wide. And high, long, deep. These are no ordinary measurements–I am learning the dimensions of love itself.