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

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 world
I rest me in the thought
of rocks and trees of skies and seas
His 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