dear jack: the oxygen itself

Dear Jack,

You got your trach almost exactly 18 months ago. Its birthday is three weeks after yours – it’s always chasing you, trying to keep up, but you’re always a little ahead of it. This is the way that you are with the whole world, I think. Running out a little ahead, exploring and climbing and pushing your way through clumps of grass and tree branches and holding your hands under the hose outside.

Your trach follows you, and yesterday, we learned that it will follow you a bit longer.

It might seem like this is confusing. You aced your sleep study, you breathe on your own all day while you run around. And so we thought, me and Dad and your doctors, that yesterday would be the day you didn’t need the trach anymore. We told people about April 11, and their excitement translated to prayer and hope and smiles and imagining with us all that could change, would change when we left the trach behind.

But yesterday you showed us that your busy self needs the safety of easy breath at night. You who love to babble at us all day long need an airway free of obstruction when you sleep. And the trach gives you a safe, secure airway, one that lets your lungs breathe this gift of air and give your body oxygen, breath by sacred breath.

When you first got the trach, I told you that what Dad and I wanted more than anything was for you to breathe easy, to know what it was like to breathe without fighting for it. And you do this so beautifully, Jack. And that’s what matters. What matters is the oxygen itself, what matters is that fierce molecule of life, what matters is that you run around and play and sing and sleep without worrying or fighting to keep oxygen.

You are already so much bigger than the trach, Jack. Your life stretches tall and far like your favorite maple tree in the front yard. You love to be chased and tickled and you love to dance to the record player and you love to throw the green frog kickball in the backyard. Keeping the trach for a while longer, for however long you need it, is so small.

Sometimes it might seem not so small. Sometimes people might point or stare, or ask what it is, sometimes people might think it is harder for you to do things. Sometimes the rhythm of our home might feel really different from the homes of some of your friends, and it is a little different. But what I want you to know, when it feels different, when the trach feels like it separates you or when people stare or don’t know how to talk to you, when you’re scared or angry –

you can ask Jesus to tell you the story of you and your trach. You can march up to the throne of God and ask, in a way I can’t ask for you, to hear the story of your creation, the story of how God calls you, you, Jackson David, very good. You can go out onto the water where we look for Jesus and you can wrestle and argue and fall down and be rescued and keep arguing and being rescued every day. This is the fullness of life with Jesus, Jack. It includes argument. It includes telling our stories and hearing our stories told.

So for however long you have the trach, however long you need it, however long it helps you breathe easy, I pray that you keep asking Jesus to tell you the story, that you keep asking to see the goodness and fullness. I pray that you keep running and chasing and laughing when you’re tickled. I pray that you keep loving the feel of water in your hands and splashing in the tub. I pray that you live in the fullness of easy breathing. As for me, I’ll be thanking God for that small bit of silicone, and the wondrous life of yours it helps protect.

Love,
mom

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

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

a life of septembers (a letter to my husband)

Dear P,

It’s been a long time since I tried to write you something. Today we finished J’s nursery, and I was standing in the doorway while you positioned the icons above his bed, staring at the ordinary miracle of it – how we built this space, this child, this ark of marriage. How much has changed in the long bend of years. 3 Septembers ago, beloved, we were arguing on Skype about long distance.

And 2 Septembers ago I sat in your parent’s dining room, a bit overwhelmed and overjoyed, my first birthday gift to you tucked upstairs. I had put trash bags over it for the plane ride, but I am so terrible at wrapping gifts, I didn’t even think to tie a ribbon on them. They’re hanging behind me now.

And last year we fought and loved and laughed through the first few weeks of grad school, my anxiety unraveling between us, all those things I’d planned to keep safely tucked away from you discovered so soon. Isn’t that just the way marriage is?

I believe we will measure our lives in Septembers.

This year, this September, our first child will be born. We named him and loved him together far before he was the wildly kicking baby he is now. I wanted to write you something, for this September, this moment in our ever-turning world.

How you astonish me, P. You’re out on the back porch grilling for the family who’s coming for dinner. I see you march in and out of the kitchen with that joy of purpose. And you always, always, always have time for a kiss as you pass me on the couch. You always have time to answer some other question from this little corner where I sit, where Jacks kicks me. You astonish me, you know? I’ve never lacked words except for the words for you.

This September we meet Jackson. And we’re out here in the water with Jesus, P, hoping wild and trusting big. I wish I could tell you what it’s like to drive back from Austin with you in the late afternoon, singing that one praise song, my voice catching again and again and again because I realize that I believe these words – and I look over and there you are, crying too, smiling. Your faith is an anchor in my soul. Your hope in Jesus, as you move through the kitchen, through the rhythm of our Septembers, is a reminder to put my hope in Jesus.

I’m more in love with you now than I was any of our last Septembers. I’m in love with your kindness, how you get me water when I don’t want to leave the couch, how you champion others, how you remember things so many other people would forget. How you love. You remind me of St. Francis. I think you both understand that if we dared to hope it, if we dared to ask, God would show us that God is far more deeply in the midst of our lives than we imagine. I think you both know how we need only ask and the grace of Christ will move in us, will open us to receive Christ Himself. I think you both pray to the God who loves birds and peonies and a green plum in season. How this creation it is good, very good, and we should pray like we actually mean to see and speak out that goodness. I sometimes praise God for the peonies, for the greenness of the backyard, for the Brazos river where we go sometimes to just be together, hands linked like they have been since that first walk that June. That’s you, teaching me.

This September, I am in more in love with you than I could have been, because the gift of being married to you is that I have grown, my heart is bigger, my heart has more room for loving. Thank you, for the gift of you, for the daily, gracious rhythm of life together. For how you teach me to sing praise to God. For how you praise next to me when my voice is faltering.

Let’s measure the turn of the years together, September by September, grace by grace. I believe there will be so many more wonders for us to see. I believe you will teach me to see so many that I would miss on my own.

Love,
h