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.