when the writing happened

Five years ago, I was graduating from college, fraught with excitement. I see myself in the embroidered dress that didn't fit quite right but I wore defiantly, insistently, because it was the symbol of the woman I wanted to be - carefree, long-haired, successful, spontaneous... Isn't it funny how we imagine future selves by the clothes they will wear? How we dress up to become someone we think would be better than the person we already are?I remember driving through the silent back roads of New England towns, the dress put away, the ghost of the scrap of paper where I'd given the college boy my address hovering near my right hand. I listened to "Holocene" on repeat and furiously tried to make my mind form complicated thoughts, serve up explanations sophisticated enough for the woman I thought I could step into being.--Five years ago I longed to be a writer. I read poetry in quiet corners of campus and once I read John Steinbeck with a cold mug of coffee in front of me - the cream swirling reluctantly towards the top as the hours ticked by. I told myself I wanted to be one of those people, Marilynne Robinson and John Steinbeck and Christian Wiman, Ted Kooser and Erica Funkhouser and Edward Hirsch, people who made poems out of life and who mades living itself kindling for a flame of words.I used to exchange poetry by email with a couple of coworkers on Fridays. It didn't last, sadly, like so many of my well-intentioned plans for writing. I was so good at telling myself I was and would be and must be a writer that I didn't need to do much writing.I dressed the way I thought writers must dress. I listened to Bon Iver driving those backroads and imagined how someday I would build a world in words and a reader would drive with me and feel the slick new pavement, the sudden silence of the car wheels beneath our feet. I believed this is what would make me meaningful.--I wrote a book. I wrote it looking nothing like a writer and feeling nothing like the woman I promised I would become in order to be that writer. I wrote the book because writing it was the single thread back to Jesus I could find when the maze of the NICU closed in and I could not sleep for worrying and I could not pray for not sleeping and I could not believe what I had always believed I would believe.That is where the writing came. It stole up on me, a strange friend in the nights and I was not ready.. I had no clean Moleskin journals, no special sharpie pens for observing the world. I had not perfected the look of a writer, the feel of the words tumbling forth free. I thought writing would be like breaking a necklace of pearls - one snap, one idea, and the beauty would just spill out and clatter on the table and people would rush to snatch up as many as they could.But for me writing this book was becoming an oyster, shell rough, cemented to a rock and clinging hard at the regular chaos of the tides. Writing this book was building up a single pearl from a single grain of sand that found its way in uninvited and unexpected. My book is not the pearl, really - I think the pearl must be my whole life, my being with God, and maybe the book is the single grain of sand or maybe it is just a glimpse inside this oyster shell - a peek into the becoming of another believer.I hope, in any case, that the book is a story of this becoming.--There is so much to tell in the next few weeks - there is news of publishing the book, titles and covers and preordering and how very much I want to share with you this glimpse into the opening of Jack's story and the opening of mine, too. I want to thank you for reading this blog, this haphazard collection of snapshots. I want to thank you for following along with Jack's story in particular, for how you've listened and loved and prayed us through.This book I wrote in an unprepared season, when my table was not laid and my lamps not lit. A grain of sand and a lot of silence. A lot of my hair pulled back in a messy bun for days on end.But somehow the writing arrived, and now, soon, the book will too. I can't wait to share this with you.Love,hilary

grace, a year later (sharing at Christie Purifoy's)

I get the chance to share a piece at one of my very favorite writers, Christie Purifoy. Her book wrapped me up in a new way to see the seasons, in the world, in my life, in this always-beginning relationship with God, anew. It has meant so much to me, and I'm honored to share at her space today. Join me?Here is a little excerpt:I was all grace-less worry the first six weeks of my son’s life. He was born into the bright steadying lights of the NICU. He was born into weeks of poking, prodding, scoped up and down. His first pictures besides our Instagram snapshots were the flickery black and white of heart and head and kidney ultrasounds.Two by two, we would go into that ark, my husband and I. Two by two, and no more than that at a time. In the mornings the attending physicians and residents would form a crescent moon standing around his bassinet, and the real moon would take the night watch alongside us.We are all born into motherhood. The labor is from us, and for us, and so I too was welcomed by bright lights and pulsing blue and red monitors. I too was born into an endless click, click of blood pressure cuffs and kinked IV needles and blanket forts to hide us while we slept.Keep reading, over at Christie's?Love,hilary

dear jackson: on daring, and prayer

Dear Jackson,When you were small, in what feels like a different country, hidden behind hills of time, when you lived in the country called the NICU, I used to number the minutes. I used to count your breaths, the dip and climb of your oxygen. I used to pray each time you inhaled that the breath would come back out and that you would take another one. I prayed single words as you breathed - keep. breathing. one. more. breath. It was not that you were in imminent danger, exactly - the doctors told us daily that you were stable, that you were safe - but having once witnessed what it was for you to cry out for oxygen, I could never shake the need to count each rise and fall of your chest.Today I realized I have stopped counting.Now I watch the rise and fall of your chest with a confidence that comes, not from the little tube we slip in your neck each week, not from the nurse who watches over you in the long nights, but from you.It comes from how you run from your room to the record player, how you bring us the puffs when you want more, how you love to be chased down the hallways. It comes from how you laugh when you see us, hair sticking up wildly in all directions, when you wake up from naps. It comes from how you press against me in this phase of being afraid of strangers and then how you push away from me back into the world. You are daring, you are adventurous, because you feel safe.And so I stopped counting your breaths.I tell you this as a way of telling you something about prayer. I prayed once by counting. And now that I have stopped, that I have dared to believe you'll breathe without being watched, I find myself at a loss for how to pray. It was easy when there was panic, to keep me focused, to keep the demand right in front of God. Is this trust, I wonder as I watch you attempt to crawl up onto the couch? Is it resignation?We are in a new country, God and I, unfamiliar and brighter. I have to squint my eyes to make out the horizons of where I think I might be going. In the old country of the NICU, the only way I could talk at all was to yell and to count. Now I have stopped counting and stopped yelling - what is left? How will I begin to say something again?  So I pray to you, Lord Jesus Christ, together with the Father who is without beginning and Your all-holy, good and life-giving Spirit, now and ever and unto the ages of ages Amen.I once memorized the feel of these syllables in my mouth, in the anxious wanderings of my freshly 18 year old heart, my knees knocking as I stood in the unfamiliar familiar, Greek and English twisting up and out, past icons and candles, the singing. Every Amen is a comma in the Eastern Church, a pause in the endlessness of worship. I would walk in, often a few minutes late from idling in the car afraid to walk in alone, worship having already begun. I would leave clutching the blessed bread from the priest's warm hands, a piece of the liturgy to go into the world with me. Every Amen a comma, a pause.Back then I thought it proved something to pray conspicuously. I would go into the small windowless study room on my floor, a few doors down from my room, holding a small white spiral bound book of Orthodox prayers - all but announcing my piety to the tangle of women walking the hallway or simply finding the time to take a shower, do their homework, sink their roots into college. I would fumble through the prayers at noon, holding a knotted bracelet to count repetitions of the Jesus prayer. I would make confession, ask forgiveness, pray in a more righteous voice as time went on. I hid my heart in the glorious prayers of other people - surely, God would be more impressed with me if I prayed in ancient words instead of my own.But I want to tell you, Jack, you whose spirit is full of daring, full of courage, full of light - prayer for me now is laughter. Prayer is silence, prayer is half-formed thoughts I say in between tickling your stomach. Prayer is singing "Poor Wayfaring Stranger" night after night and feeling your head sink onto my shoulder as you remember where we are all going - out into that Jordan River, out towards home.Do not be afraid if someday you reach for words - your own, the Church's - and you find your hands come back to you empty. Do not be afraid if you come out of one type of prayer and walk the road for a long while without knowing what to say next.Every Amen is a comma, a pause, and courage is sometimes pausing long enough to feel God's friendship in the weight of your son on your shoulder. That is prayer enough. God hears.Love,mom

a story about skin to skin

I got to share some words over at Lisa-Jo Baker's space yesterday- words about mothering, words about what I had expected from my first pregnancy and how everything and nothing changed when Jack made his grand entrance into the world. It's a day late to be posting but of course, the real work of mothering involves convincing a 14-month-old that it really is raining outside (getting into coats and boots and going outside, then crying, then coming inside...).It's a story about the wondrous hard work of mothering. It's a story that you have all helped me write, as you ponder with me this walk into being someone's mom. It's a story you've taught me to see, in all your comments and prayers and well wishes. I know it's been quiet around these parts, but the semester is ending and there is new space carved into my week to write and reflect.I can't wait to walk through it with you.--I spent a year and 20 days grieving an empty five minutes. They were the first minutes of my son’s life, minutes of quick, quiet NICU intervention hidden from me where I lay, bleeding profusely onto the delivery room floor, the doctor remembering three stitches in that she hadn’t in fact given me an anesthetic before starting to sew me back together. They were the five minutes I had once imagined as the moments of transformation, the moments I thought I would become a mother, the moments when I would begin, if there is such a thing as beginning after nine months of pregnancy...Keep reading over at Lisa-Jo's?love,hilary

dear jack: one

Dear Jack,

Today you are one. You said "mama" to me yesterday, looking straight at me, babbling it over and over and over as you pivoted in your trademark style, tried to turn over the trash can, unplug a light and topple a bookcase. This morning we went outside - the air is finally cool and light against our skin - and you stood up on your own on the sidewalk and looked at me defiantly. You'll take the step when you want to, and you want me to understand that clearly.

Before you were born, there was a lot we didn't know. We didn't know what it meant to have only one eye and ear. We didn't know what cleft surgeries were like, the stiff smell of sanitizer in the room where we waited for you to come out of surgery. We didn't know the particular beeps of oxygen saturation monitors, when they dip a little low, or too low.

But I talk about that a lot, don't I? And today, on your birthday, I want you to hear what we did know. What we have always known.

 You belong.

We always knew that. We knew that in the first search for your heartbeat at 9 weeks, the first ultrasound at 12 and the second that become the next seven. We knew that when I was sweating through the fetal MRI, and when we drove back and forth to the hospital. We knew that through timid genetic counselors and surgeons and phone calls. We named you and we knew you. You belonged from the beginning, and we belong with you.

You know what else we knew, buddy? We knew that a different body doesn't make it a broken one. We told you - did you hear us back then? - that you are the very fullness of the image of God and Jesus rises with his hands and feet and side split and opened and these are what the world calls broken but we call glorious. You have always been the fullness of that image.

We knew it then and we learn it from you every day. And we learn to keep electrical cords and breakable cups out of sight, that the trash can in the bathroom makes the best drum, that it's better to ride in the big laundry basket and that our laughter is funny enough to laugh at.

All this ordinary glory.  One year doesn't seem like enough time to contain it all. Time itself seems to have stretched to make room for all that you've given us.

One year ago, you took your first few breaths. John the respiratory therapist helped you, but you pulled your breathing tube out on your own when the nurses weren't looking. And every day since, you've lived fully and unapologetically and determinedly, and you've pulled out trach and gtube and laughed at me while doing it, you've learned to sit up and stand and crawl and almost walk even though they said you were "disenfranchised" and you never look back unless to check that we're keeping up. You pull us into the gift of your life. There won't be enough words for it, maybe ever.

When you were born, you took all my old life away with all its old thoughts and fears, all its questions, and those first few breaths, you gave me back a life that's bigger.

I've always loved you with my whole heart. One year in, Jack, I love you with the whole heart that you've made wider.

Love,mom

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

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

until every good gift is given

The shower is just a little too hot. I'm weak-kneed still from the work of bringing Jack into the world. I steady myself against the walls. I feel each minute pass. I feel the weight of the water, the easy way that I breathe. How I long for Jackson to know how easy it is to breathe. How I long for that miracle of breath, that gift, to have been given differently. How grateful I am, in the tangled way of things, that it is a gift God will not rest until He has given it.Jesus and I have never before had so much and so little to say. I keep entering the throne room, watching and waiting, and I can't see anything. And the throne room becomes the ocean and I am unsteady on my feet. My boat is gone, the night is thick and starless. And the ocean becomes the desert and I am the Israelites wandering their 40 years, every sky an impossible hope for manna. And the desert becomes the ark, and there is the steadiness of that water from the shower - the rain that falls, keeps falling.The throne room is the ocean.How many weeks did we walk on water, Jesus? How many hours did I lean late into the night, walk the space of Jackson's room, the kitchen, the living room, praying the prayers I had never known to be possible? How many nights did You come towards me, those words repeated? Take heart. It is I. Do not be afraid. How long did we kneel together, Lord, the three of us somehow dwelling together in this feeble self of mine, in this feeble house? And it is here in the midst of the ocean that You declared Yourself King over the lights, the lives.The throne room is the ocean, and the ocean is the desert.The NICU measures the world in three hour increments. The lights do not tell time, and minute by minute, feeding by feeding, we watch the joy of our hearts grow, become more himself, reveal his personality: strong arms, strong legs. He sleeps like me, hands curled up by his face. I wonder every morning in the shower whether we might yet get a phone call, a miracle reported, whether we might walk in to discover everything changed. Morning by morning, no report comes back. I wake up each day desperate for manna. Jack grows, we rejoice. How many sets of three hours have I lived?The throne room is the ocean, and the ocean is the desert, and the desert is the ark.We have lived days and nights of rain, the seas swelling far higher than our small boat. We have lived inside the smallest perimeter - hallway and bed and bits of highway in between. We have lived, and are still living. We sent out a dove - we wait in the ark for the promise of dry land, the olive branch.The throne room the ocean the desert the ark. They are one. They are the places of God's unthinkable nearness. They are the places of encounter. They are the places where I walk out with my son, with our family now made more whole than we knew it could be, day by day, minute by minute. Your living is your prayer, my mother tells me. You are alive, you are still living. This is the prayer of the throne room, the ocean, the desert, the ark. God is unthinkably close. The world is difficult, beautiful, and new.He will not rest until every good gift has been given.Love,hilary

dear jackson: the gift of breath

Dear Jackson,We came in early this morning. You had a bit of a rough time falling asleep, your nurse told us, but you found your peaceful spot eventually, and when we came to your crib, there you were, your face tucked up in your hands (you never stay swaddled for long, Jacks). We kissed your head and prayed a few more prayers. There is always time for more prayers, because, you see, breathing is its own prayer.And I want to tell you a little about today, about breathing, about your dad and me and some of the friends Jesus has sent us to be here along the way.Breathing, sweet boy, is a gift from God. God breathed life into Adam in the very beginning - as your Storybook Bible says, God looked at Adam and Eve and said, "You look like me." And you do look like God, Jack. You are the image of God. You are His workmanship. Breathing is a gift that God is giving you.For you, that gift is going to come through a tracheostomy. That's a breathing tube, but there is something cool about the word "tracheostomy" so I'm going to use it for you and around you, and Dad and I will teach others to use it too. God is going to help you breathe through this tube for a while, until you are even bigger and stronger than you are now, until, as your friends help to bring together your lip and your palate, as one of your friends (a favorite of your Dad's and mine) has built up your jawbone, you won't need the trach anymore.Knowing you as we do, we're guessing you'll have already determined not to need it long before your last surgeries.So, Jacks. This is a big decision. Your dad and I sat in a room without windows, my big cup of water in front of me, the vague smell of hospital coffee and hand sanitizer in the air, and we listened. We listened to the medical diagnoses - you've got some challenges with your airway both in your nasal cavity and your mouth, and something of a challenge in the area of your voicebox - but we also listened to some of the doctors talk about you. About the challenges you've had finding just the right place to put your head to breathe easy, how frustrated you get when you can't figure that out, about how, as your friend the trach nurse said, you don't know yet how easy breathing is. And you deserve to know that, Jacks. You deserve to know the freedom of this gift from God.We listened. Some of these doctors talk more about your diagnoses than they talk about you, and that's understandable. But some of them - the ones that we look to most for counsel and wisdom - they talk about you. They talk about your thriving, they talk about your development, they talk about giving you the chance to explore movement and learn to crawl and walk and be in different positions. They talk about making sure you get to run around in a couple of years and cause us so much trouble. As they talk, I see you. I see you and Dad in the kitchen. I see you outside our house with the dog I do promise to buy you. I see you coming to church with us and the grocery store and all the while, you're free. You're free because, with the trach, breathing will be as easy for you as it is for some people who don't have one.So your dad and I decided today that we'll consent to this surgery for you (there is a surgery, too, for a G-tube to help you grow this first little bit but I bet you anything that you are like your dad and you will love food so much that soon you'll be able to eat and eat and eat and you won't need the tube). It's not easy to make these decisions, but today we felt peace. Today we were reminded that you ought to know how easy breathing is.People will want to say you're a kid with "special" needs. They might try to tell you or tell us that you're so brave and we're so brave, because we're carrying all this extra stuff with us. But it's not true. You are Jackson. Your needs are just your needs. And we love to make sure you have what you need.Today God reminded us that He gives breath to us. And for you, He is giving that gift through this trach for a while. But it is the same big, bold, wildly beautiful gift of life. And He is giving it to you no less miraculously or wondrously because He is giving it a different way.So we will go hold you in a few minutes and tell you more about it. For now, I'm writing this down so that you know that from the first moments we decided, we knew that we were only making the path straight so that God could come give you what He longs to give you: lungs full of His breath of life, and a heart full of His marvelous love.Love,mom

i number the minutes

I number minutes like stars. The minutes Jack is in my arms. The minutes he sleeps, oxygen levels resting in the high 90s, that even 100. The minutes between where we sleep and where he is, the minutes of hallway, elevator, distance.And the minutes of prayer.Last night we stood over the giraffe warmer, which my baby doesn't need, feisty and strong as he is, keeping his own temperature, and my eyes fell on the icon Preston brought from our living room - the good shepherd, the lamb on his shoulders. It sits and looks over the edge of where Jack sleeps, and out past him, to the hum and beep of the other beds, the other little ones.Months ago, at the first phone call, at the very beginning, when we didn't know anything but the need for a follow-up ultrasound, the need for a consultation, the need to see a more specialized doctor... I stood at that icon weeping and cradling my belly and asking Jesus again and again where He was. I wept and asked and I told Jesus, again and again, that He could do something, that where there was skin or muscle missing He could build it. Wasn't it His voice at the beginning, singing the world into being? Wasn't it His voice the wind and waves obeyed?Wasn't Jesus the one who spat on tongues and spread mud on eyes and put his fingers in ears and declared, by the words of his mouth, be opened?And wasn't it Jesus, reaching down into death, calling back Lazarus, the widow's son, Jairus's daughter?Last night I looked again - my son has a mark from his IV in his hand that looks just like the mark in Jesus' hands in the icon. The hands that are holding the lamb on his shoulders. The hands that, even in these long minutes, I believe - I must believe - are holding my son.I cannot number all the stars or all the minutes.. But then I remember:To whom then will you compare me,    that I should be like him? says the Holy One. Lift up your eyes on high and see:    who created these?He who brings out their host by number,    calling them all by name,by the greatness of his might,    and because he is strong in power    not one is missing.And I remember, again:The Lord builds up Jerusalem;    he gathers the outcasts of Israel. He heals the brokenhearted,    and binds up their wounds.He determines the number of the stars;    he gives to all of them their names.Great is our Lord, and abundant in power;    his understanding is beyond measure.The Lord can count the stars.  He can name them all. Who am I, then, to think that Jesus has not been mindful of these minutes? Who am I, then, to think Jesus has not counted each one with me, His knowledge of them far more perfect than anything I could fathom?Jesus has seen each minute of prayer, of worry, of resting, of oxygen and of desperate joy when Jack is in my arms and I feel the weight of him, his hand grabbing my shirt, and Jesus is numbering the minutes with us.Isaiah 40, Psalm 147 - God numbering the stars is hidden among the promise that God comforts His people, that God should be praised for His care of His people. Hidden among the bigger promise is the piece I can cling to: Jesus knows each star, each minute. Jesus holds us, counting each breath.Last night, I held Jack and swayed my first sway of motherhood, singing his father's favorite:This is my Father's worldI rest me in the thoughtof rocks and trees of skies and seasHis hand the wonders wrought. Number the stars, Lord Jesus, number the minutes. I believe I have only begun to see Your nearness and Your love. I believe I have only begun to see the wonders Your hands have wrought, and can, and will.Come, Lord Jesus, number the minutes with me.Love,jack's mom, and your hilary

I am a long way out on the water

"I hope your baby has both his eyes."She tells me this when she can't find the card she made for Jackson. When she comes out for goodnight hugs to the group of women gathered to shower me and this little one with love, she hugs my belly separately from me. I hold onto the card, put it next to my bed. Her mom tells me that she and her brothers and sister have been praying for Jackson, for miraculous healing. I'm not sure there are more powerful prayers in the whole Kingdom than those of these children, who know Jesus with a closeness most of us have forgotten.We are bringing her card to the hospital with us, and I have been praying daily that we might get to show her that God has answered her prayers.--My son's elbows and knees (or feet, or something else) press close to the edge of my skin, and I remember that we are close to his birth. There are only a few weeks left. I have quieted down, my body moving deliberately, slowly. We have come a long way from the first positive test in January. We have journeyed far. And as I have slowed down, I hear something surprising. I hear Jesus ask me to be bolder. Pray, Hilary Joan. Come and kneel with me and pray. --When we first found out about Jackson's cleft, we drove in a stunned kind of silence to the new hospital. We sat in the new, terrifyingly quiet octagon room where we would have ultrasound after ultrasound, blood pressure, weight, the daze of normal and not. We waited, we listened, we drove home. I thought my heart would strangle me in its longing to escape from the car, from the little person nestled so safely, so joyfully inside me, from the news, from the everything-it-now-must-inevitably-be.At 29 weeks, we had an MRI. Jackson was, as he always is, on the move. The results of the MRI showed that the right ear hadn't formed completely. "This is new for us," my doctor said. "But they can repair it surgically. The internal structures are there, so there is a good chance he can hear eventually through that ear." I wrote down words on the back of a credit card envelope. I hung up the phone, and again, my heart and its desperate desire to escape my body, escape the ever-dwindling weeks, the soon-to-be birth. There were only 11 weeks left then. No time for a miracle. No time for Jesus.--'I hope your baby has his eyes." 3 weeks from our due date I meet this little girl, who has a boldness I'm not sure I have ever had. I meet this girl, who prays for something I claimed to be too hard, too late, too impossible. 3 weeks from our due date, I hold a card that prays for what I have been hedging around. I hold the prayer that I have been afraid to admit that I am praying.--The Jesus Storybook Bible includes the story of Jairus's daughter. Listen to these beautiful words:"'We don't have time!' Jesus' friends said. But Jesus always had time. He reached out his hands and gently lifted her head. He looked into her eyes and smiled. 'You believed,' he said, wiping a tear from her eye, 'and now you are well.' Just then, Jairus' servant rushed up to Jairus. 'It's too late,' he said breathlessly. 'Your daughter is dead.' Jesus turned to Jairus. 'It's not too late,' Jesus said. 'Trust me.'"--I know what the MRI says. I know the ultrasounds. I know the plans and the teams and the big words. I know the impossibility that it must seem to be.But week after week, Jesus has shown up. Take heart, it is I. Do not be afraid. Week after week, I have been invited to pray with the One who formed my son Jackson. Week after week, I have been invited to ask for something that is hard to believe. Week after week, I have lost my footing in that once-sturdy boat.Week after week, I have learned it is safer on the water with Jesus than in the boat with only my anxious, strangled heart and the crowd that murmurs - it is too late. Jesus stands there: It is not too late. Trust me. --"At Jairus' house, everyone was crying. But Jesus said, 'I'm going to wake her up.' Everyone laughed at him because they knew she was dead. Jesus walked into the little girl's bedroom. And there, lying in the corner, in the shadows, was the still little figure. Jesus sat on the bed and took her pale hand.'Honey,' he said, 'it's time to get up.' And he reached down into death and gently brought the little girl back to life."--Jesus tells me to get out of the boat and get on the water. So here it is:I am praying that God completely, miraculously, heals my son Jackson. I am abandoning the reasonable. I am abandoning the words - "well, whatever God wills," or "if not, then we'll do X" because those are the words that I use to stay in the boat while Jesus waits for me on the open water. I am abandoning the careful attempts to make you think that I am still "realistic" about our circumstances, to reassure a mysterious crowd that I am still seeing things as they are.I am abandoning the familiar strangling anxiety of the boat, the familiar unbelief.Hilary Joan, pray. Come kneel with me and pray. It's not too late. Trust me. --I don't know how Jesus is speaking to you about prayer. I don't presume to know. But if I can ask, if you would, come out here with me on the water for a little bit? Whether it is about Jackson or about something in your life, will you come out here, where the reasonable drowns in the presence of grace, where what is expected  falls at the feet of the one who promised it was not too late for Jairus's daughter? Here, in the middle of the water, there is none but us and Jesus. And we are safer here, in the arms of the one who saves us, in the hope of the one who heals us, in the mercy of the one who loves us.Will you come out here with me on the water? Will you come and pray with me?Jesus is here. It's not too late, Hilary Joan. Trust me. Love,hilary

when I learn something about expectations

We are getting so close to Jackson's birth it seems like I should be able to picture it all. I close my eyes on the couch, thinking - okay, we will go to the hospital. I'll be in pain. There will be doctors, questions about medication, about how-far-apart-are-the-contractions... I can't picture any of this. I sit on my bed and I feel him sliding around, and I am overcome by how much I want to be able to picture it. How I want to see it happening and unfolding before me - how much I want to picture my son.But that's the thing. I can't.I have closed my eyes, input all the information from doctors, from thousands of images, from the many appointments we never expected to have. I try to imagine holding this little guy, watching the NICU people love on him, as I know they will if they need to. I ask God for an image - just a glimpse, Lord? - and my mind is empty.--There are days and hours when I sift through the laundry or look at our statue of St. Francis or a spare pair of shoes lying somewhere they don't belong (because I leave my shoes everywhere), and I am surprised at how God has broken open my ideas about being pregnant. How this was the summer of walking around the broken glass.I had ideas about baby name books, about weekly self-portraits at the bathroom mirror. I had ideas about what growing another person would feel like, about the smiles from strangers and the pride of the hard work that it is to carry another heart around, and not only another heart, but another everything - kidneys and lungs built up from the cells, from the smallness. I was so proud at the beginning, so sure it would be everything I expected or better. I built a lot up on that idea that it would be better - I would look better than I imagined, my child would be the paragon of timely growth and expected physical and mental appearances, I would have the most stamina, I would be one of those moms who never gets tired, never has a hard time doing anything, merely carries her baby along on the inside until it emerges, and everything afterwards is picture-worthy, caption-worthy, other-approval-worthy. I had ideas from the pictures, the blog posts, the stories, from Facebook, from my own head.--And then, there was the 18 week appointment, the announcement that it was a boy, the first time we really saw his fierce being, his beautiful, alive, kicking self. And there, coming along behind him was a diagnosis, a list of names and symptoms, a list of coordinating appointments, new doctors, a new hospital.And my expectations died.--With all death there is grief, there is an ache to return to what you were holding onto before it was pried out of your fingers. With all death, even the death of those things that weren't real (those expectations and ideas, those pictures in my head) that is needed, there is a longing, a wish, a sadness or a patience or both. Some moments I lie in bed thinking, what has happened to us? I feel him move so often, I wish I could tell you. He is shy around other people - he moves for me, for his dad, sometimes for a patient grandparent. But he saves most of it, I think, for him and me, for the quiet of the sleepless nights.He is the life that arrived when my expectations died.He is the better that was standing on the other side of the broken glass.--I do not know what Jacks will look like. I'm not in denial about the words, the list and doctors and symptoms, the thin picture they might try to paint.And I do still put my hand over this boy and I ask God to do something that I would not believe even if I was told. I tell God to remember His promises. I ask, and ask, and ask, for a miracle.Every day since we learned about these things that will follow Jack into the world, every day since, I have asked.Perhaps the real reason that I can't picture what it will be like to have this baby doesn't have anything to do with Jack's cleft, with the mystery surrounding the right side of his face. Maybe the real reason is that Jesus is protecting us from the expectations, rescuing us both from the weight of my attempts to know too much, to see too far ahead.Jesus is saving better for us.And from the other side of the expectations, Jesus walks towards us, arms open. From the other side of Mary's expectation of a body in a tomb, Jesus names her. From the other side of the crowd's expectations that Lazarus and Jairus's daughter can never rise from the dead, Jesus wakes them. From the other side of our expectations that we will drown in a storm we cannot control, Jesus silences the water, the wind.I can't picture what will happen in a few weeks.I am, for the first time in my life, sure that means it is something better than I could imagine.Love,hilary

dear jackson: it will be better

Dear Jackson,You are growing so much, little man. I am amazed at your hard work - the doctors say you're right on time, even measuring a few days ahead. You move and squirm around a lot, but I know that the space is starting to feel small. The world here is bigger, and there will be much more space for you on the other side. We have a big backyard and sidewalks, we have the river walk where Dad and I go sometimes to talk and sift through our thoughts, where we go to wonder out loud.It's been a little while since I wrote to you about your cleft. We had the MRI, the ultrasounds, the follow-up appointments and there will be a few more before September. You are being such a good sport about letting these strange people take pictures of you. And I know it is a lot, and I think we're both relieved when we pull out of the hospital each time, heading home, the three of us still making our way through.I have been talking about you to God, every day. Lately I've been asking how this is happening to you, this complicated, challenging stuff.  I keep saying that it seems like you're too little to have to go through all of this, that it's so unfair, how much I wish I could be the one to have this instead of you. How much I would give for you not to need any extra help, how much I would give.  And I tell God that I don't understand how this can be happening to someone I love so much, because, little man, I love you so much more than I can explain.But then Jesus asked me while I was standing in my closet, trying to pick out something to wear, in that silence that so often carries the voice of God to our noisy hearts: Hilary, do you believe that I love Jackson? And then Jesus asked me, Hilary, do you believe that what I will do for Jackson is better than what you can imagine? Little man, I do believe this. And I want you to know that I believe it. I believe that when you are born, in those few short weeks that stand between us and the mystery and adventure of your birth, Jesus will be celebrating. Jesus will be rejoicing with us that you are here, that you are finally here in the world with us. And I believe that if you are miraculously healed before birth or if you go through some surgeries, if you come out screeching or if you need a little help breathing from the doctors and nurses in the NICU, if you have some or all or none of what we are preparing for right now, I believe that Jesus will do, and is doing, better things than I can imagine.I could try to trust in ultrasounds, in MRI reports. I could try to trust in miraculous healings or dreams or prophecies or the late night prayers we are praying over you. I could try to predict what will happen, to imagine you, to imagine what is ahead. But I believe, little man, that it is better to put my trust in Jesus.And Jesus has better plans for you than the ones I could come up with. Jesus has better things for you than I can ask or imagine. Jesus knows you and loves you so much beyond my imagining.Jesus led me to your dad - and he is so much better than I could ever have imagined.Jesus led me to studying philosophy, to asking big questions about disabilities and differences, about human nature and the image of God - better than anything I imagined when I was applying.Jesus led me to the right college, to the right high school - both better than I could have imagined when I first set out.And Jesus brought you to us, and you are already so much better than I could have imagined. Carrying you along with me, every day, I remember: what God has in store is always far more than we could have imagined by ourselves.So, Jackson, these last few weeks, I am leaning on this for both of us. I don't know what is up ahead. I don't know where we will be in 8 weeks or what it will be like. But I know, I know, I know that Jesus is with us and ahead of us. He will be rejoicing when you're born, for there are far better things in store than the things we can imagine.I can't wait to see you, little man. Just a few more weeks. We will be rejoicing.Love,mom

this is what I'm waiting for.

Dear Jackson,Your godmother asks what I'm looking forward to about you. She asked as she was holding your soon-to-be friend, her sweet daughter. I was staring, lost for words, worrying, making those lists in my head with big words like NICU and surgery and MRI and cranio-facial team - all those words that if I am honest, just mean the people and the tools that are in place to help you and me and Dad as we begin our life together. They're just words for the friends and things that Jesus is bringing with Him in this wonderful season of your arrival.But I was running short on words, a little scared, and right then, you kicked me. You have such a personality, little man. Mom, I'm here. I'm okay. Every day when I start to worry, and I stop and put my hand over you, you kick back. Mom, I'm here. I'm okay. We have read a lot of the stories of Jesus' healing power these last few months. You know about Jairus's daughter and about the son who Jesus raised from the dead. You know about the woman who reached out in the crowd, just to touch the hem of his robe, and she was healed. And all those crowds, after Jesus walked on water, who just touched him, and were healed.But one of my very favorite stories to tell you is the one about Zacchaeus. Remember him? He was so curious about Jesus - like most of us are - that he climbed up a tree to get a better look. The Bible says Zacchaeus was a tax collector and very rich. This tells us that Zacchaeus was probably not a very just man, who was unfair to others in the city, who did not treat them well. He doesn't really seem like someone that Jesus would hang out with.But Jesus sees him and comes to the tree where he is sitting. And guess what, Jack? Jesus says, "Zacchaeus, hurry and climb down, for I must stay at your house today." What do you think about that? He sees Zacchaeus, hiding up in the tree and he tells him to hurry, climb down, because I'm coming to your house. Jesus isn't just able to see where Zacchaeus is hiding, but Jesus wants to be with him. Jesus is going to stay at his house.Zacchaeus is so overwhelmed and excited that he scampers down the tree and is happy to welcome Jesus. And he says to Jesus that he will make right the things he had done wrong - he will pay back people he had treated unfairly. He will give half of everything he owns to the poor. And Jesus tells everyone there, "Today, salvation has come to this house... For the Son of Man came to seek out and save the lost."There is so much I want to tell you about this story. But right now what matters, Jack, is that sometimes I have been a little like Zacchaeus hiding in the tree. I have been scared to come down from my worrying to welcome you because I have been so scared that I won't be able to be the mom that you need me to be. I have been scared that maybe I won't be good at this or ready, that I will do things wrong.But then I see Jesus standing at the foot of that tree holding you, and Jesus tells me to hurry, climb down, because you two are coming to stay at my house. You are coming to be with me. And when I hear that, and I see you and Jesus standing there, I climb down and realize that I am so happy. I am so excited for you, just like Zacchaeus was so excited about Jesus.Jack, my little man so fully alive:I can't wait to hold you. To sit with you and reading you the books our friends have been sending you - Ping and James Herriott's Treasury and The Going to Bed Book and The Mitten. To sing and dance around the kitchen for so many years that even when you're 22 and you come home after college and you think I'm ridiculous, you'll still join in.To put you in the wrap or the carrier or the stroller or the whatever-baby-gadget-we-get and showing you the world. I'll show you the leaves and their greenness, the water and the ducks that swim along the Brazos in spring. I'll show you the big sky on our drive down 7. I'll show you the cows, the wild orange and blue and purple flowers in April. I'll show you the lilacs in Boston outside Grammy and Granddad's house.To introduce you to your aunt and uncles and cousins - they'll show you the paddling pool and how to toss a football back and forth and probably how to get into mischief, too. I hope they teach you that.To hold you. I already said that. But I'm so excited for that. Just to hold you.Hurry, climb down, for I am coming to stay with you today. Jesus is bringing you with Him, Jack. He is bringing you to me and Dad. I can't believe that we get to hold you, laugh with you, rock you to sleep, teach you about leaves and ducks and cows and the good things Jesus made.I'm not hiding in the tree anymore. You and Jesus, you are waiting for me. You make me too happy, too overjoyed, too excited, not to scamper down.Love,mom