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.


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.


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.


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.

jack’s mom, and your hilary

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.


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. 


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.