on champagne and learning to walk

Preston bought me a nice bottle of champagne tonight. The kind of bottle that means we are having a big celebration, that there is something amazing deserving of the best feasts. We drove to buy the champagne after I finished class for the day, just after I got my comprehensive exam results. Our exams are graded; I got an A-.

While Preston drove, he declared that this was worthy of that nice bottle of champagne. I called it “pretty good.”

What he wanted to celebrate, I wanted to say only, well, I passed. 

I couch my pride in a constant future improvement, I feel good only if I get the chance to do even better next time. But of course, there is no next time for comprehensive exams. That’s part of the joy, isn’t it? It should be. But there I was, holding the nice champagne in its paper sack in the passenger seat, calling it only “pretty good.”

What is it about the future that dulls the shine of the present? What is it about the possibility of something even better that makes the real somehow less glorious than God has declared it to be?

I told someone this summer that, Jack? He is the real. He is what my ideals give way before. The ideals of me as a mother in her all-natural, breastfeeding, right-kinds-of-product and no-screen-time and … glory. That sheen of imagined glory. I said that Jack has cut through it all. He looks at me and I give way. I give way to his real laugh, that dolphin squeak of joy over his trach. He looks at me and I give way, I give way to the goodness of the formula that keeps him growing, the screens that bring him people telling stories in ASL, in a language that he already seems to love. I give way to the real of his life.

Why won’t I let Jack cut through the sheen of my imagined glory as a student?

Why do I hold the nice champagne and permit myself only to say “pretty good”?

This is the summer where Jack first started to learn to walk. He pulled himself up onto chairs, plastic toy tables that make over 1,000 unique noises, along precarious couch cushions. He fell and he pulled back up and he banged his hands against the surface and he laughed.

This is the summer where I sat down to watch him learn how to walk. I could have given that up, I could have studied 30 more hours a week, I could have spent my time grasping the sheen of the student I think I ought to be.

And when I first saw the A-, I said to myself, you could have, you should have. 

Jack was learning to walk. He wanted to hold my hands in the dining room and cross the floor on two feet. He wanted to be held and then to launch himself away from my chest to grab the icon of St. Michael that hangs on the wall near his door. Jack was learning to play peek-a-boo with me. Jack was ripping my copy of Marx and Wittgenstein in his frenzy to stand up independently, pulling my high stack of books down around him.

Was all that only pretty good? Was all that not worth the champagne, the celebration?

I am learning to walk, too. I am learning to walk down that well-worn path and answer myself differently. Was it only pretty good? No, it was more. It was the fullness of what I had, it was pouring out the hours, the understanding, the work. It was spilling out onto the altar the hours I had spent – standing bent double to anchor my son’s first steps – perched in a chair on the second floor of the philosophy building reading and rereading Kierkegaard, Mill, Hume – worrying myself sick over Heidegger and misunderstanding Marx – singing a human being to sleep.

I am rewalking the well-worn path and saying something new. It isn’t just pretty good, it is good, full stop. I gave way to the real of my son’s life. I gave way, but I did not give up. I gave way, but I did not give in. I gave way, but the way was still full, still fruitful, still full-stop good.

 

We popped the champagne, we laughed and kissed Jack and watched him try to pull St. Michael off the wall.

This is good. Full stop.

Love,
hilary

when I haven’t joined the gym

I used to live for the exalted feeling of sneakers on my feet at 4:30. The work day ended I would change clothes in my tiny office, slip into new running shoes-real ones-and take off down the three flights of stairs and bound out into the woods behind the campus where I worked. I ran, and I prayed, and I felt in the singing of my bones a bond with the world, with God, with myself.

I have an eating disorder. She is not easily described or categorized. I like food, and I eat it. So far, it seems reasonable, the relationship we are all supposed to have. But there are stretches of days and hours and weeks where she panics at the thought of ice cream and wine and that extra bag of pretzels last Friday lunch. So she writes me notes to remind me that delight will always cost me something, and here I will pay in ounces and pounds, the disappearance of my hip bones under flesh, the dress from three months ago too tight here, and there, and there.

She writes me warnings, exhortations – if you don’t join the gym you’ll just keep gaining weight, if you only did yoga you’d be a better mother, don’t forget that someday you’ll regret the extra indulgences… everything in moderation, Hilary, no excess, self-care, self-love, it’s what well-balanced people do… 

She was the reason I put on sneakers every day and ran and ran and ran. I was running away from her, running to fulfill her, running to keep her at bay and keep her my best friend.

I had a baby almost exactly 10 months ago. In the chaos of the NICU I lost the weight of him, all the evidence of his presence in my body, so quickly that I seemed disjointed in my skin. For the next nine months I pumped milk for him, and when I pumped I thought briefly of how the calories would slip away from me, safely into someone else, how I could breathe freely for a little while because the eating disorder, she was satisfied with the knowledge that nothing I ate could come haunt us.

She promised me that it was better to be this new, loose self ill-fitted in her skin, that it was good to see the ridges of ribs and spinal chord. She promised it made up for the fact that I hadn’t joined the gym. It made up for the fact that I hadn’t put on those sneakers, that I didn’t even know where I had left them.

I stopped pumping earlier this summer, and my flesh appeared again, different, new. The eating disorder sat next to me on the couch, weeping. How could I – become so different, lose control of my body – but she dried her eyes and she resolved with a smile – now is the time to join a gym, Hilary. Other moms do it, other moms make time for self-care and self-love and they go running with their babies and … and… you can, too. You’ll be okay that way. 

She is always promising me that if I stretch a little farther I will hold onto something better and more beautiful, that feeling of exaltation she used to give me on those long runs in the woods. She is always promising me that riding on every run is the proof of my commitment to doing what is best for my body, my self, my family, my world.

It’s time to join a gym, Hilary. 

I miss the woods, the exaltation of them and the singing, the place where I would stop and look at the water and feel myself in the world and in love with the world. I miss the way the ground pressed up against my feet and the burning of my lungs while I raced myself up the hill. I miss the sweat and the satisfaction. I miss the simplicity of giving her what she demanded of me, the daily thirty minutes, the sense that it relieved me of guilt, that it washed me clean.

And I cannot love her anymore, the eating disorder, the person she promises me I’ll become if only I give her what she wants. I cannot love her anymore, and I wonder how to escort her out of my house, out of my car, out of my closet. I wonder how to give up all her promises and to press my hands into my skin again and to feel my bones only as mysteries beneath flesh. I wonder how to put Jack on my hip, day after day, and notice that it holds him on its own, how to feel gravity dance with my feet and to see that there are marks, memorials, of pregnancy on my stomach.

I cannot love her anymore, and so I don’t join the gym. The tiniest, first beginning, and a new feeling – not exaltation, not absolution for a guilt she invented – but hope.

Love,
hilary

dear jackson: the work on the ground

Dear Jack,

I have begun so many letters to you. Each one drifts away from me in the busyness of joy, this business you set me about, to be your mother, to become your mother. Day in and day out, you set me back on the ground, back at the beginning. You are learning to sit on your own, and you always turn back to me, grin widening to let me in on the secret – that all the work begins here on the ground. You turn back to your toys and you press the button one more time, the music comes back on, you clap your hands, we repeat.

All the work begins here on the ground.

This was the time, last year, of my first letter to you, named as you are, Jacks, Jackson, Jack. More often we call you buddy. Most often we call out to you with our laughter, and you call us with yours.

Last year I told you that you might need a little help breathing and eating. That was true, but last year it was so new and we pricked our fingers trying to hold all the hard words at once, searching the damp and crinkly pages of the ultrasound for answers. It was rushed and we were trying to be unafraid for you. I want to reach back to me then, I want to reach back with you and your laughter, your smile that is wide enough for past and future, for a world good and difficult. I want to reach back through the folds and wrinkles of time to tell her that it is you, learning to sit on your own, who can make us unafraid. That it will be you teaching, not me.

This time last year I wrote to you, afraid as I was that we wouldn’t begin on the right foot with the right language with the right protections around you. This time last year I thought my skin and muscles and bones weren’t enough to keep you safe in the world where most people have never examined a stoma in a neck, where most people don’t know how a barium swallow study is performed, where to have only one eye or only one ear is to beg a question – “So someday, will he look normal?” This time last year I thought I was to stand in the gap, stretched far and wide like the thin coils of wire that hold up bridges. I would be the wire and the bridge, I would be the guard and the keeper, I would be safety, salt and light.

I imagine someone might think I’m telling you too much about myself, the ways I thought, the things I feared. But transformation’s not a work I want to hide from you, not anywhere, and I’m in a chrysalis too, little one, and you should know how much of me God keeps changing.

I wrote you a letter May 9 last year, afraid to fail in giving you exactly whatever was right to give you. I was up high above the ground, whispering over and over, making rope and a bridge out of Jesus’s words, take heart, it is I, do not be afraid. But here you are, calling me to the ground. All the work begins here on the ground, here where we take off our shoes. I wanted to build you a bridge to keep you from what I feared was a dangerous world, a dangerous life.

Instead you have brought me to the ground of your life, you have set me to work unraveling the rope I wove so tightly, fear coiled inside it. You have set me here, among your favorite toys – Sophie the giraffe and the multicolored hedgehog, your zebra blanket, the orchestra turtle – and here I see how you haven’t needed me to build you a bridge or carry you away, you’ve just wanted me here sitting with you, clapping and singing and making animal sounds, doing it all on repeat.

It is impossible to write, Jack, what you’ve taught me, but the closest I can come is to tell you that I am here on the holy ground of your life unraveling a bridge I didn’t need to build, neck deep in love with the self you’re becoming. You lift up your arms to meet mine and we laugh. We reach back to a year ago, we pull that woman down to the ground with us, to pull her into the holy, into the good. You reach around for another toy to shake. You laugh again.

All the work begins on the ground, buddy.

Love,
mom

 

dear jackson: about your dad’s second book

Dear Jacks,

You are finally asleep. You have taken to resisting it unless someone is holding you, rocking you, standing up… you have a pretty specific list. I love how much you already seem to know about what makes you happy: our faces, your bright red fox toy, your yellow and purple rattle. You light up this world, you light up the rooms where you are. You’ve caught the hearts of your nurses and your doctors, and that smile – oh Jack, that smile – we will do almost anything to see that smile, to catch it for just another second.

Last night your dad gave you a bath. You smiled and smiled and smiled at him. You already know a lot about your dad. He is the one who sings to you with the record player, the one who catches you up in his arms, keeps you safe, rolls you over and over, tummy to back and back again, helping you be strong. He is so good at that work, helping us be strong.

I want to tell you about your dad’s book – Out of the House of Bread. In the chaos of your arrival the months slipped by. I meant to write this when he finished it, as soon as we knew about you last year. I meant to write this all summer, while we were waiting to meet you. I meant to write this all fall, and time rushed past, slow and too fast all at once.

Your dad wrote a book that kept me, that keeps me, tethered to a life of prayer. It is a book about bread. It is a book about talking to God. But Jacks, this is the thing. It is a book where Dad lays out gently, moment by moment, practice by practice, ways for people to connect to Jesus. It comes out next week, right before you are four months old.

You must have heard him pray, all those long months while you were growing inside me? He would close his eyes and place his hand over you, and you would kick him back with your fierce assertions that you were listening, that you were there. He would pray with the Psalmist, pray with Scripture, pray with wonder. He would help me pray the examen. He would pray, day in and day out. He still prays this way.

Your dad wrote a book about prayer. I bought you a copy. I know someday, when you have questions (because we all have questions) about this living conversation with God, about the work of prayer, this is the book I will want to have ready to give you.

The kitchen is a place of great prayer in this house, Jacks. When you have questions about the work of prayer, I will tell you to go into the kitchen. I will tell you that there, sitting with your dad, I learned to pray.

Chances are good Dad will be in there, his hands full of spices or dough, his eyes alight. Chances are good that the kitchen will be a place where you go to talk with God. Chances are good that God will meet you, again and again, along the hallways and among the smells and tastes in this home.

When you ask me what to do, what to pray, I will offer you this book. I will offer you this kitchen, so well loved by your dad. I will tell you that this is where God meets us.

Your dad will teach us so much about prayer. Much of it will be lived, something we can’t write down. Some of it he wrote down, in this book, and we can read it again and again and practice it together, the three of us and everyone God sends to join us on the way.

I wanted to tell you this, Jacks – your dad is a man of prayer. I can’t wait for you to ask me those questions. I can’t wait to give you this book.

Love,
mom

dear jackson: you show me Jesus

Dear Jackson,

You’re in six month pajamas tonight, and I can see that the feet are far too big for you, the little husky puppy faces on the ends dangling helplessly where your toes can’t quite reach. You’re growing so much, buddy, that I can’t really believe that we were in the NICU all those weeks ago. I just wrote down “months” and erased it, because this is the truth – time has changed for us. Hours are days and months are minutes. I think this is what they try to tell you when you become a parent – time reshapes itself in the midst of you.

You’ll know this yourself someday, I imagine. For now, you’ve been out in this wild world with us for 10 weeks, and you’re sleeping, hands up by your face the way you always seemed to sleep those long months on the inside. I looked at those ultrasounds again (do you remember any of that? The echoes of strange voices talking to me and Dad about you? Did you ever shake your head, at how little we all knew of the mighty person you already were?) yesterday.

There is no picture of you I do not find remarkably beautiful.

In those days, a decree went out from Caesar Augustus. All the world, to be registered. This is one of the beginnings of the story of Jesus.

There are many, though. There is the beginning with Mary and Gabriel, the Holy Shadow, the be it unto me. There is the beginning with prophets who cried out in wilderness and desert to make straight a highway for God. There is the beginning song of creation, the Word by which everything was made

This is the season where we begin the story, where we prepare, where we make ourselves ready

I want to tell you something about Jesus, Jack. But who am I to tell you anything about Him? You know Him. You know Him in a way I have forgotten, with your one eye scanning the world, always looking for Him, always eager, always anxious for another sighting, another glimpse.

And then there you are, in the midst of the world where you are looking for the answer to your being here and the world being its beautiful self, and everyone who looks at you sees Jesus. You show Him to us.

Oh, how you show Him to me. Every minute.

Someone might think it’s because you show me something about weakness or vulnerability. Someone else might think it’s because you needed a trach and a feeding tube and it was so hard and I had to believe that God had good plans in spite of or even in the midst of.

But you, Jack, you show me Jesus risen in glory and power. Jesus whose love is wild and unyielding. Jesus who walks the hallway of the NICU. Jesus who reigns in operating rooms and who comes in the might of other children who kneel the afternoon of your surgery to pray.

You show me that Jesus is King and always has been.

What can I say to you about Jesus? In those days, a decree went out. An annunciation was made, and a visitation. There was a leaping for joy by John, after whom you’re named (your names mean God has been gracious. But you already know this).

When you open your eye in the mornings and smile at me, creasing your NAM tape, when you kick your feet up in the crib and toss your body back and forth as you reach for the toy fox, for your reflection in the mirror above your head on the play mat – you show me Jesus.

In those days, God announced that He was sending you to us. In those days, God announced that you had been formed differently, that what nature often does it hadn’t done the same way in you. In those days we walked, you and me, down many of the streets of downtown Waco, and in those days we caught glimpses of you – black and white, three-dimensional, printed on computer paper and clutched on the long ride home – and in those glimpses we knew. I know you, I would whisper over and over when I passed the fridge where your pictures hung. I know you, I would shout in my heart when the technicians swirled the ultrasound wand around my belly, looking for what makes you different, looking for a diagnosis. I know you. 

You show me Jesus, Jacks. Risen in glory and power, coming to us palms open, scars lit by the same glory, wound open so that we too can put a hand inside and touch the wonder of His work and rescue. You show me Jesus who comes in those days when the decree goes out.

You show me Jesus, who holds you in those glorious scars and pours His love through them over you, and through you over others.

In those days a decree went out. This is the season where we remember, where we tell the story, where we prepare for Him who is coming to live with us. And you, Jacks, you are leading me.

Love,
mom

when this is fifteen months of gratitude

I hear him sing to Jackson over the hum of the suction machine. He gives me the gift of a long shower – take the time, Hil – and he scoops up our growing wonder of a son and they are off, dancing into the nursery, one or two quick passes with the suction catheter and back out to the living room, to the record player, to the lights on the Christmas tree and the windows that look out on the world he insists is more beautiful than I reckon it.

I am thinking these days about my husband.

I am thinking about how they tell you marriage is teamwork and then you learn it walking hallways mid-disagreement, mid-misunderstanding, and you knock on the door to your son’s NICU area and you transform. You pause the conversation, pause the disagreement, and you walk the space of knowing your son. You walk the space of trach changes and whether or not to up his amount of milk per feed. You walk the space of who will hold him, who will suction him, who will prep and clean up after the small extra things we do to love on this growing wonder. You walk the work of language, how we will talk about Jack, how we will ask others to talk about him. You walk the silent wonder at how many more people understand than you ever thought would.

I am thinking about how they tell you marriage is a great unfolding, a mystery, how you don’t know who it is you married until you are already past the aisle, the vows, and into the world.

The first time I Skyped with my husband I fell in love with him. He was sitting in a bistro, headphone cord dangling, and drinking coffee. I was drinking iced tea from our grocery store terrified that I wouldn’t seem casual enough. I was wearing running shorts and an old T-shirt; he’ll think I’m very athletic, that’ll be good. I talked too fast and not fast enough. One hour became five, the bistro closed, he called me on his cell phone from his driveway.

I couldn’t have told you then we’d have a son named Jackson who would bring us to the NICU in Temple for forty days. I couldn’t have told you then that we would learn how to care for a tracheostomy, that we would number hours and weeks like stars. I couldn’t have told you, staring at my computer screen one hot July night, that I would sit in the kitchen the first Sunday of Advent crying because I’ve never known someone to love so unapologetically.

You don’t know who you married until you do. And even when you do know, looking at a senior boy from Baylor in your computer screen late on a July night, you learn it for the first time every time.

This is a post about gratitude.

He remembers what day the trash collection is. He remembers what is in the fridge and in what order the leftovers can be eaten and recreated. He knows how to make Jack smile as they dance to the record player, to the Christmas tree, to the windows. He knows that this world is more beautiful than I reckon it most days. He knows to tell me that.

It is the first Sunday of Advent. I’m sitting in the kitchen while it rains outside and Jack sleeps nearby.

You don’t know who you married until you do. And you learn them again and again. And they will take your breath away.

Love,
hilary

I sing him to sleep

This is the irrational season, where love blooms bright and wild.

That’s Madeleine L’Engle, about Christmas. We’re in November now. I’ve lived a lifetime in a hospital, a lifetime where the seasons changed, we bought jeans at Target because we hadn’t come prepared for fall. A lifetime where we learned to lean hard on each other – I’ll prep the suction, you hold his trach – a lifetime of doing this while kissing Jack’s head and telling him funny stories, making faces, laughing the dark away. A lifetime of backpacks and diaperbags we can’t quite tell apart, of writing philosophy in the dark, reading Til We Have Faces and For the Life of the World while our son sleeps, swaddled tight, a smile flickering across his face as he dreams.

This is the irrational season.

When my nephew was born two years ago, I went out to visit him around two months. While my sister took a shower and did some things around the house, I held him. He fussed, as babies do; I did the only thing I could think. I put on Norah Jones and I sang him while I swayed around their kitchen.

When I was a senior in college I swayed a baby around the hotel room singing “Winter Song” by Sara Bareilles and Ingrid Michaelson on repeat for 182 times, according to my computer. Her mom was speaking at the conference, and I was babysitting; she fell asleep after play 68, but I listened on. It was the first time I imagined my own someday dance – the living room, the late night, the baby that would belong to me, I to him or her.

And the Sundays after college when I was searching for myself, I returned to be with the littlest ones, scooping them up as I sang the old hymns, stepping between toys, between other children. I sang the words that were my ropes, my anchors on the water. I swayed and sang a year of Sundays.

When I was pregnant with Jack, there were days that I thought the world had left me behind. I used to say that something in me died, that my expectations died, those long 20 weeks after his diagnosis. What could be the same? I remembered singing Sara and Ingrid and I remembered singing Norah and I remembered the old hymns and I once walked a mile along the river weeping because it seemed I would never be the mother I imagined myself to be.

I was wrong. A fallow field has not died. It is only being emptied for the fullness that is coming. It is being made ready. And my heart is a field God laid fallow – for there was not enough room in me for my expectations and my son. There would not be enough room for the kind of love I prayed to give him.

In the irrational season, God makes the fields fallow. God widens the spaces where love must enter. I never stopped believing that God was good. But only now do I see my way to believing that God’s goodness extends to this work – to widen my heart for the wonder that is my son.

Jack loves when I sing Norah Jones. He looks up at me, grabs at my hair, falls asleep and nestles deep in my arms. I sing him the old hymns, “This is my Father’s World,” and “Alleluia, Sing to Jesus,” I sing him the stories, the songs of meeting his dad and driving through early mornings along route 97. I sing Sara and Ingrid. I sing, my voice catching in my throat. The joy sears along my vocal chords, stitching into me the words, the look on my son’s face, the singing.

I tell God that there is so much I wanted to give Jack that I can’t.

God smiles. Nothing was lost that Jack was always meant to have.

I tell God that there is so much I thought would be different than it is.

God smiles. Your heart is wide enough now.

I tell God this is the irrational season.

God smiles. Love is blooming, deep and wild.

If you are looking for me, I am singing my son to sleep.

Love,
hilary