how we pray now

This is both a post about Jackson and not a post about Jackson.

When the fetal MRI results came back last Monday, something broke open in us. Not only does Jackson have a cleft lip and palate, no right eye, and possible breathing difficulties, but also his right ear is displaced and the canal unformed. All the internal structure to hear is there, but it's not opened to the outside world.

This should be it. This should be when we turn the prayers toward being prepared, toward acceptance, toward the hope of good surgeons and NICUs and doctors. It should be, but I told you something broke open.

Nearly five years ago, I sat on a couch with Jesus. As I detail in my first book, this was a visceral encounter with the Christ, unsettling and fearsome. He said to me, "It's going to be about trust with you," and then he left. And for years I walked and often still walk in a place of silence. The work he left me with was the work of trust, the work of belief, and for a long time the stakes for such trust and belief were not very high. Until we were having a kid with serious complications. Then the stakes were very, very high.

What do I trust? What do I believe?

I told you something broke open in us and what broke open was belief. What broke open was trust. I don't advocate praying beyond what God has given you permission to pray for. I don't advocate praying for a yes when God as spoken a no. Prayers for easing into death swiftly and painlessly are good prayers when God has brought peace to the situation where healing is not going to come. Prayers for the ministry of surgeons and the consecrated work of nurses are good prayers when God has brought peace to the diagnosis as final. Good prayers, faithful prayers.

But God hasn't given Hilary and I peace about Jackson's diagnosis. We have peace, but it's peace around praying for his healing.

I wish I could write a post in which I talk about that one person we told this to who didn't understand it at all, who asked how we could believe such a thing, because it would be an easier point to illustrate: us, vigilant and persistent, in the face of unbelief. But it's not like that. Everyone we've spoken to about it responds the same: "Of course. Until God tells me to stop praying for this, I'm praying Jackson is completely healed."

I marvel at these people. I marvel at their belief. I marvel, because I'm sure they think I believe it along with them. I did, sort of. And I do so much more, now. But there was a good space of weeks and months when I didn't.

I believed when we walked into the first ultrasound to confirm the diagnosis that we would find out nothing had been wrong all along. I put my trust in ultrasound machines malfunctioning, in unskilled eyes, in mistakes. I put my trust in false positives and clerical errors. I put my trust, really, in anything but God. I trusted God abstractly, around the edges. The machine failed—God knew it all along, blessed be God!—so that would be the answer. God a participant in, not the source of, the relief.

But Jackson did have what they said he had. Jackson had more. And each visit there was something new. Each visit there was but one more thing. So I stopped believing in healing, because I believed in acceptance. I believed in the machines and the doctors and the statistics and the geneticist. I believed in the plan we would make to give him all he needed. I believed these machines and these people and these plans would accomplish in Jack's life what I really should have been relying on God for: everything. I had made God peripheral again. I had made God a bystander hoping along with us for the best.

Again, I believe God does use machines, people, and plans. But I am convicted that God uses them when I first look to God, from whom they are then set in motion, instead of looking to them as a way of not having to really deal with God. Because when I deal with God, when I bother to ask God how we should pray, God does not say to trust the machines, the people, the plans. God says to trust God.

Which isn't so bad when God then says, "And here are the machines, the people, and the plans that I have aligned for your son." It isn't so bad when there is evidence like ultrasounds and MRIs and being close to one of the best hospitals in the country for Jackson's differences. It isn't so bad when your wife is getting her PhD in philosophy with a focus on the mere difference view of disabilities. It isn't so bad when all these things seem to be aligned for Jackson to have a good life.

But God doesn't say that. God says, "You are not to stop praying for his healing."

Seriously, God? Are you kidding me?

And I hear God, crisp and direct, "Are you?"

I've been thinking a lot about what I believe. What I really believe. I've been praying the psalms, reading the Scriptures, encountering miracle after miracle. I so often read these passages and recast them safely: the God who heals, brings water from rocks, makes the blind to see, the lame to walk. This God still does these things, but only abstractly. God does something like this in our hearts. God does something like this in our lives. God causes our inner paralysis to heal, our inner blindness.

Are you kidding me? I hear God ask. Is that all you think I can do?

Do I really believe, or do I work hard to believe only what's palatable? We say Jesus Christ rose from the dead. We say the blind saw, the deaf heard, the lame walked. Do I really believe these things? Do I take them as seriously as I should?

I've confronted myself before with the assumption that the reason God miraculously heals people in less developed countries is because it serves as a sign to draw people to God, whereas here we have the medical technology readily available that we don't need such things. I pause over those words now and see them for what they are: I want us to be gods. I want us to have the answers. I want us to be able to tell God that God can go stand over there and wait, because the humans are using those brains God gave us and we're just going to handle this for ourselves.

But God has broken that in me. God isn't letting me get away with that thinking anymore. Either I really believe God is all who God says God is or I don't. Either I believe in the miracles or I don't. Either I believe this is how extraordinary God actually is or I don't.

It really is about trust with me.

We have told God often that we are so ready to hear that this is what Jackson has and it's done. We are ready to receive that. We are ready to believe it. We are ready to prepare. We have nine weeks left, God free us from the prayers of healing and let us alone to make peace. No matter what, we will still worship Jesus. No matter what, we will yet praise him.

But God does not release us. God says to us and to many others to pray on.

So here we are, we can do no other.

I don't know what will happen, but I know what I hope: I hope Jackson David Yancey will be completely healed. I hope he will have an eye. I hope he will have a formed ear. I hope he will have a closed face. I hope he will have a closed palate.

This is what we are praying for, on the other side of all things, when it would now be undeniably God if he were healed.

But I remind God often of the psalms. I remind God that God likes to show off. So show off, O Lord. Show off. For you alone and only you could do this.

This is how we pray now. Wild. Untethered. Rushing into hope and trust that God is who God says God is.

And we believe fully that, should the healing not come through the miracle of God but the miracle of God through machines, people, and plans, God will give us the courage, the character, and the conviction to walk through that. But we'd be shamed to ever tell our son we stopped praying fierce for him when God had not spoken a word to us to stop.

I was reading The Message translation of 2 Corinthians 1:8-11 two nights ago when the conviction settled in me to write this post, the reason it is here:

We don’t want you in the dark, friends, about how hard it was when all this came down on us in Asia province. It was so bad we didn’t think we were going to make it. We felt like we’d been sent to death row, that it was all over for us. As it turned out, it was the best thing that could have happened. Instead of trusting in our own strength or wits to get out of it, we were forced to trust God totally—not a bad idea since he’s the God who raises the dead! And he did it, rescued us from certain doom. And he’ll do it again, rescuing us as many times as we need rescuing. You and your prayers are part of the rescue operation—I don’t want you in the dark about that either. I can see your faces even now, lifted in praise for God’s deliverance of us, a rescue in which your prayers played such a crucial part.

How we pray now for Jackson is to pray for the impossible, but will you join with us in believing God is I AM?

I don't care what denomination you are. I don't care what you believe about Communion. I don't care what you believe about sex. I care that you believe in the power of Jesus Christ. I care that you believe God is capable of doing what seems impossible, because how many times has God already done that? I don't care how you pray. I don't care where you pray. I don't care if you call God him, her, it. I care that you love Jesus. I care that you believe Jesus.

I'm calling on my charismatic friends, you who speak in tongues and sing out miracle, I'm calling you to pray with us wild like we believe in the God who turns water into wine.

I'm calling on my catholic friends, you who confess Jesus is made known in the breaking of the bread, I'm calling you to pray with us wild like we believe in the God who raised Jarius's daughter from the dead.

I'm calling on my reformed friends, you who know God is sovereign in all things, I'm calling you to pray with us wild like we believe in the God who orders and establishes our steps.

I'm calling on my evangelical friends, you who profess God's nearness and desire for us all, I'm calling you to pray with us wild like we believe in the God who gave disciples power to proclaim the kingdom through miracles.

Join us in fierce prayer. Join us in fierce trust. Because no matter what happens—no matter what—I think what matters most right now is the willingness to show God how much we trust God. We are setting out prayers before God like incense, inclining God to what we ask. We are broken open. May the perfume of our trust and belief be pleasing to God.

You only, O God, could do this. You alone. That's what I believe. That's what I am learning to trust.

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dear jackson, fear not

Read other letters to Jackson, here.

Dear Jackson,

It takes no great mathematician to figure out you were conceived around Christmas. You're due September 22nd and people since Genesis have counted back nine on their fingers every time a birth announcement is made. Now, someday I'll tell you more about this, I'll tell you the moment when your mom and I both knew, but for now I'll tell you this: God planned you.

Your mom and I were going to wait, were going to have things planned better—be out of debt, be buying a house, be a whole list of things more along than we are now. But there was a moment for each of us, separately, when the Spirit said, You are not to wait. There will be a child this time next year.

Before you were, you were, Jacks.

I return to this point often with God.I return to this particular peculiarity of your coming into being. Tomorrow is your fetal MRI. Tomorrow we are going to have a lot of pictures made of you. They'll figure out how severe your cleft lip is, the palate as best they can, confirm you don't have your right eye, and take a look at your brain. They'll take a lot of pictures and then we'll wait a few days for a phone call. In a month, we'll meet with the plastic surgeon and the speech pathologist and they'll tell us what they think the plan will be.

I paced downtown yesterday on the phone, telling a good friend of mine about you. I told him about the MRI and about God saying to your mom and I that you were supposed to be born. I told him, too, about praying for your healing.

That's been harder these days, Jacks. It's been harder because I don't want to be unprepared. I want to make sure you have everything you need. I want to make sure you're taken care of. Three ultrasounds now, seeing your face on the screen—even though you still won't fully show us the cleft—I should just accept that this is how it's going to be for you, shouldn't I?

I try. I try hard to do that. But after the first few moments of the comfort of resignation, God taps me, Have I told you to stop praying for this?

Jackson, I know so little about God. I know so little about why I can't let go of praying for your healing. It's confusing. It's a bit maddening. See, I'm not worried about how you'll look. I'm not worried about how you'll sound or hear. You're not less whole, not less you if healing comes in the form of trained surgeons and careful doctors. These, too, are the friends of Jesus along with the cadre of saints interceding for us. So if I'm so comfortable with all that, why does the impulse linger? Why does the fixed hope not uproot?

I didn't always love the psalms, Jacks, not the way you know me to love them now. I found them boring and frustrating. It wasn't until you the psalms began to make a certain kind of sense. I pray a litany of them over you every night, my hand on your mom's stomach, upon you, and I find the psalms have a power I hadn't known before:

Some trust in chariots and some in horses,
but we trust in the Name of the Lord our God.

It could easily have been:

Some trust in ultrasounds and some in geneticists,
but we trust in the Name of the Lord our God.

The psalms are fierce in their confidence, Jacks. The psalms pray boldly because they know something about God most of us have forgotten. Someday I'll tell you the story of Jacob, later called Israel, who wrestled with an angel of God. Jacob would have won, it seems, had the angel not wounded him at the end. The rabbis say this soberly reminds us of two things: Israel is the nation that gets to wrestle with God face to face; and, in doing so, they walk with a limp. That intimacy comes with a cost.

In and through Jesus, we're a part of that family. We're a part of the family that gets to wrestle with God. Our prayers get to be big and powerful and bold and wild, too. We get to remind God of the promises God has made. We get to tell God our anger, our fear, our doubt. We get to ask for the impossible because we have been invited to grapple with the Impossible all the time.

And so it makes sense that after the first ultrasound, after the first visit, I would pray big and impossible for your healing. I told God so often about how God was the one who said you were to be born, so God needs to take care of you. I asked big because God is big. I'm so sure of that. But after awhile, it seems silly to pray for it, doesn't it? It seems after the second ultrasound, the third, it's time to let it go.

They forgot God's works and the wonders God had shown them.

That's from another psalm.

Sunday was hard, Jacks. It was hard because we just want to hold you, we want to keep you close, we want to know exactly what is going on with you and do whatever we can to make sure you're okay. Your mom and I stood in church and held each other, weeping because we don't know why God seems so out of reach, so quiet. As long as you're okay, it's enough. No matter what happens, no matter what doesn't happen.

I told my friend on the phone all of this, then I told him the rest.

I told him how about how when your mom and I first found out, we had a private Eucharist and time of prayer with our bishop and his wife. I told him about how during that time of prayer I had a vision of Jesus the King, who looked me through and said, "I am the Good Shepherd, but I am also the King. What I say is accomplished is accomplished."

I told him about the way people have prayed for your mom, you, and me. I told him about how no one seems to quite feel that this is a settled thing. I told him about the passages of Scripture; about how praying for you like this before you're born is a different sort of thing than praying for you like this after you're here; I told him about the people who have had visions of you; I told him about the nearness of Mary these days, the knowing that there is a company in heaven praying for us, for you.

I told him all of this and then I told him the hardest truth: when you're someone who sees the signs of God everywhere in the world all the time, everything is a sign until suddenly nothing is.

See, Jacks, I want all those Scriptures, those visions, those moments to mean something very specific. I want you to be healed. I want that. So I want all of those things to be a kind of evidence, proof-text, surety.

Some trust in visions and some in feelings,
but we trust in the Name of the Lord our God.

But the truth is, I haven't gotten a yes or a no from God about this.

Maybe that's the limp. Maybe the limp is the God who speaks but does not clarify.

I hung up the phone and sat vigil in the stillness while your mom read for comps.

And you know what I heard, Jacks?

It takes no great mathematician to figure out you were conceived around Christmas. And what is the message of Christmas? What is the message of a child God says will be born when parents otherwise didn't have plans for it?

Fear not.

Fear not the diagnosis. Fear not the MRI. Fear not the surgery. Fear not the waiting. Fear not the rest of his life. Fear not the work he is to do.

Fear not, fear not, fear not.

This is God's answer today, Jackson, the night before your MRI: fear not.

I want to have it recorded somewhere. I want to have written down somewhere the why when people ask how we're not so sad, how we're not so grieved.

The answer is because the Lord has spoken.

Because the same Lord who announced to us it was time and right and good for you to come into being is the same Lord who will see you through.

It is the same Lord who told me not to stop praying.

It is the same Lord who told me that he is the King.

It is the same Lord who no matter what an MRI does or does not show will be your guide behind and before every day of your life.

Your mom and I don't trust in chariots or horses, Jacks. We trust in the Name of the Lord our God, we trust in God's good work in you, and we, through Jesus, fear not. Whatever does or does not happen, Jackson: fear not.

We'll keep walking with that limp, but we'll keep walking with the same Lord.

Fear not.

Love,

Dad

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dear jackson, what it means to be healed

About a month ago, we found out our first son, Jackson, would be born with a severe facial cleft affecting the palate and causing his right eye not to form. You can read about that here.

Dear Jackson,

We found out about you on Martin Luther King Jr. Day.

We were planning on volunteering in the community garden of a historically black church in east Waco, but your mom and I delayed a few minutes so she could take one of the just-in-case pregnancy tests we kept under the bathroom sink. It probably won't surprise you I was listening to the soundtrack of a musical when your mom walked around the couch I was sitting on like it was Jericho, the same way she did a few years before when I asked her to marry me.

Left my troubles all behind me, back there when I climbed on board.
Jordan River's where you'll find me, it's wide but not too wide to ford.

I kept playing the soundtrack in the car when we drove the opposite direction of the church to the grocery store, where we bought five more tests. Your mother took all five of them, in rapid succession. While most said it would be a good minute before we had a result, every last one read pregnant or two lines or emoji child within seconds. You have, from your earliest days, been fiercely assertive of your existence.

Your mom and I sat on the couch for awhile, grinning like fools. Scared fools. Not scared of you, but scared of what it meant to be parents. What it meant to try and care for a tiny human. All the while knowing there was still the ordinary of our lives to do: your mom had class the next day, a special seminar session she had to go to that afternoon; I was on deadline for something, though I forget what.

Then several months later, we found out about your cleft, your unformed right eye, and we were scared for different reasons. Again, we weren't scared of you. We were scared because we wanted to make sure you had everything you ever needed, that you were taken care of, that whatever help or treatment or option could, might be—we would find it. I've already written you about those days, those first days of finding out, how we joked about eyepatches and cried when we didn't know if you were okay.

I don't want to tell you that part of the story again. I want to tell you about the day we found out.

Left my troubles all behind me, back there when I climbed on board.
Jordan River's where you'll find me, it's wide but not too wide to ford.

The cast recording I was listening to that day was for the musical Violet.

Violet is the story of a young woman who sets out to beg a television preacher to restore her face. When she was young, her father, a lumberman, slipped while sawing a piece of wood that Violet was holding on one end. The saw slid down the frame and sliced open her face. They were up on a high mountain, in a remote town, and though her father ran her down as fast as he could, the town doctor may have been a bit drunk stitching her face back together, leaving Violet healed but disfigured. And so Violet boards a bus headed to claim her miracle of healing—to look normal, as she thinks of it—on September 4, 1964. (Twenty-five years before my birthday, if we're attending to details.)

Along the way, Violet meets two army servicemen, Monty, a smooth-talking white man, and Flick, a kindhearted black man. Violet bonds with them over poker, which her dad taught her to play as a way to make friends with men despite her looks. Violet reveals to Monty and Flick her intentions to become an amalgamation of every beautiful woman she has ever seen, expecting all she needs to do is have the preacher pray and she'll get it. Monty treats Violet's hopes as foolish, while Flick tries to explain he doesn't think Violet needs any healing. After all, it's just how she looks. She's not sick. She's not dying.

I'm going to skip over a good deal here, because it involves some complicated choices of adulthood I'd rather you not dwell on just yet. But suffice it to say after a good deal of effort, Violet does meet the television preacher, who tell hers she doesn't need a miracle because she doesn't need to be healed. Her face is not a disease. Her condition is not hopeless. Violet, enraged, begins to shout every prayer and Scripture she knows, grabbing the hands of the preacher and forcing them on her face. After this, she shouts that she has been healed and runs off. She makes her way back to a bus station where she's to meet Monty—the smooth talker she talked to a bit too much—and when she presents herself to him, convinced she has been healed, he sighs, shakes his head, and pities her for surely finally seeing what he always knew: she was never going to be healed, religion is just a joke.

Overcome with grief that her face is still the same, Violet refuses to see Monty anymore, fleeing from him. Monty considers going after her, but proves himself as he always was: a certain kind of coward. Flick shows up then, and, finding Violet, reiterates to her what he said all along: she didn't need her face to be healed. She had already been healed and was healing. Flick, as a black man in the 60s, knows a thing or two about how the way a face looks can feel like an affliction, when it is anything but. In the closing song, Violet, Flick, and the cast reconcile how maybe what God gives in healing isn't always physical, because what we assume needs healing isn't always what needs healing. Healing is sometimes, and maybe more often than not, the gift of seeing each other as we really are: whole even when we don't so quickly see that for ourselves.

What makes all this so powerful, Jack, is that the actress who plays Violet wears no makeup on stage. She's not made to look disfigured and she's not made to look like a member of the cast. She is plain. We never see the disfigurement, it's not the focus of our attention. We see her. We know she has it—she tells us often enough, it consumes her—but we get to know her as who she is before we even remember the burden she carries on her face. Violet's healing is being free to see herself as we have seen her the entire musical—beautiful, just as she is.

Jack, when we sat in the hospital in Temple and found out you didn't have your right eye, that you had a facial cleft, all I could do was think about sitting on the couch, driving to the grocery store, Violet playing the whole way.

Left my troubles all behind me, back there when I climbed on board.
Jordan River's where you'll find me, it's wide but not too wide to ford.

Violet sings this when she first boards the bus to find her miracle. All the life before is left behind, what awaits her, surely, is everything she thinks she has missed out on. The reference to the Jordan River is striking. It was this river Jesus was baptized in. Baptism is the sign of new creation, Jack, the old being taken away and the new being completely given. When Violet says you'll find her in the Jordan River, it's because she believes that God is going to give her a new face. In the closing song, she repeats the line, but this time it means something else entirely. She has walked out on the other side of that river, she has found her healing, but it was not as she nor society expected. But it was as God intended.

Your mother and I pray for your miraculous healing all the time, but especially every night. I pray the monastic hours over you, the psalms and the old collects, the meditations on the Scared Heart of Jesus and the intentions to the Theotokos to intercede with us for your healing. Every night, without fail. You kick most when we talk about Jesus, which your mother switches between finding endearing and wishing you'd let her sleep with great rapidity. (Again, you like to assert your existence.) We're not stopping those prayers until Jesus tells us otherwise, Jack, because we have already seen him miraculously heal you once.

Jesus grew your jawline, Jesus made it so you could breathe. Your mother and I look at the ultrasounds, but a month apart, and we can see the difference. It's subtle to everyone but us, trained to search for every last bit of evidence of you we can find. But Jesus did do that; Jesus brought cells to perform miracles weeks after they were supposed to. The most life-threatening part of your condition was healed. You have been, already, healed.

Jackson, I want you to know something. I want you to know that we'll keep praying for your healing until Jesus says stop, but your mom and I don't attach healing to how you look. What we want for your life is for you to be whole in the sight of God. We don't know what that means. We don't know if that means by miracle you'll have both eyes and no gap in your face, if that means you'll have both eyes and a gap they heal through surgery, or a glass eye, a surgically healed gap. Or maybe this other thing. Or that other thing. We don't know. We're not scared of that. Regardless of what happens, regardless of what miracles are still yet to come, you were healed by Jesus, you were made to be able to breathe. Can I tell you how that's enough? Can I tell you how much that already is?

We have just over three months until you're born. We've spent a lot of these past months trying to talk as openly as possible about you to help other people get a sense of the language we want to use. Most people, almost all people, want to say the right thing and are so afraid they won't. (It's those people, as it happens, who usually say the right thing because they bothered to wonder that in the first place. It's a sign of moral character. It's the people who quickly tweet you a photo of the 'kid who had the same thing' so 'feel better' that should ... pause before proceeding.) People want to know how to pray, they want to know what they can do. We tell them to both pray for your miraculous healing and pray for you to be whole in God's sight. How we read it, no matter what happens with your face, both of those prayers have been and are being answered.

Jack, well-meaning people are going to say some silly things in your life. They're going to read healing passages in the New Testament and assume that physical healing is superior, is the sign of something exclusive and the property of God. Be kind to these people. Help them read slowly. Help them see how often Jesus only heals when he is asked to. Help them see how what Jesus heals people of is often culturally damaging, not personally. It's really hard to live in the ancient world if you're blind. It doesn't have to be so today. We live in a world that caters to able bodies and defines those able bodies very narrowly. But we don't notice because we assume our own experience is the normal one. So people may say things about how you still need healing if you don't have that eye, or if you need surgery to help finish forming your face. But you can remind them, gentle as you can because sometimes it will be hard to be gentle, that Jesus has already made you whole. You're like Violet, Jackson, no matter what is happening with you physically, God already sees you wholly, as you are. Your mom and I look at 3D ultrasound images, Jack, and we see the same.

See, bud, healing isn't always for the individual. It can be for the community, too. And you're already helping so many people see how much bigger God can be than what we think of as normal. You're already healing expectations and assumptions. Jackson, you are whole in the sight of God and your parents, grandparents, godparents, and a whole wide community of people who pray for your wholeness, whatever that looks like or means.

Jordan River's where we'll find you, too, Jack, in the arms of the Good Shepherd, because no matter how you look, you're on the other side, it's not too wide to ford: you're already whole.

Love,

Dad

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notes on what we've learned about our son [so far]

Before

These are the notes of the past nine days. This is where and how we are. The parents are both and.

I

The genetics counselor doesn’t know how to reply when we say he’ll get tired of us making him a pirate for Halloween.

She has already asked us how we’re doing, the two of us with our backgrounds in counseling appointments, pastoral care, and we share a look, the look that says we know the boxes she’s looking for, the list of communities, support. Will there people to help us with this difficult time. She has a box that needs checking and so we make the list: yes there are good grandparents, yes there are good friends, yes there is a church.

It’s then we mention the eyepatch, the pirate, and she does not have a box to check for this and so she stalls.

“It’s a lot of different emotions all at once.”

There’s a box for that, I think, that she can check. There’s a box to confirm the expecting parents are both not in denial and.

And what.

What are we. Where are we. What is this and who are we now.

Periods not question marks. There were question marks some other time, some time not so long ago and yet years ago. Sometime. There was a season in which there were question marks. I think.

II

They don’t know what it is. They have suspicions, but they don’t know. His heart is completely fine, as is his brain. The ultrasounds have shown consistently growing limbs, abdomen, skull. It’s all there, all as it should be, the hard-won work of making life.

Except for the gap across the right side of his face, from the lip into the palate and up along the right nose to the eye socket. Our Jackson, 20 weeks old, cleft lip, cleft palate, and no right eye.

They show us the left side first, slowly, clearly, before showing the right so that we can see what is not there. We had spent a week scrutinizing the first ultrasound, when the diagnosis was cleft only, nothing to say about an eye. We, untrained in the reading of the images trying to make sense of what they had seen, not finding a reference point, not grasping the difference. But at the second ultrasound, the slow, patient ultrasound, when they have reason to expect something is not as was expected to be, we see it, untrained eyes initiated, and we know.

It’s probably not the usual syndromes because his brain is healthy. His heart. (I have already said this, but listing them helps. Here are the things that are okay. Here are the things that have not been unexpected.)

They’re watching his chin, because if it doesn’t grow a bit more he’ll have trouble breathing at first. They’re not as concerned on that front. The concern is the clefting, the eye. This should mean a lot of things, but he has no signs of a lot of things. They think it might be, if the genetics come back clear after he is born, something as simple as amniotic band syndrome, where a small piece of the amniotic membrane by chance rests on one part of the forming baby and cuts off growth from that part. Usually that means amputated limbs. But his feet, his hands, they seem fine. They flutter and flicker across the ultrasound.

He’s our normal, healthy son. Except.

Except?

Question marks, no periods.

III

I love my son. I love Jackson.

No question mark. Never one question mark.

I do not love a different version of who he is. I do not love a different idea of who he will be. I love him. Full stop.

Someday he may read this and I want him to see, nine days after the first question, two days after the first confirmation, I love him. I love him. I love him just as he is right this very moment. I’m so proud of him. I always will be.

No question marks.

IV

They assign you a team when this happens. They assign you a plastic surgeon, speech pathologist, audiologist, ENT, OBGYN, geneticist, and case worker. They will see him yearly until he’s an adult. There will be surgeries the first few yeas. There may be more after that.

The OBGYN is so kind, a deep well of a soul, and talks to us like we can handle the terms and the words and respects by intuition we are a people of words. We are a people who need to be able to call it something, to give language to the unexpected not to control it but to hold it.

“This must be so hard for you, since it’s your first child,” the geneticist says this, and I would believe her more if the flicker of excitement at the possibility of something to discover wasn’t in her eyes.

“Not really,” we hear ourselves say. “It’s easier because it’s our first. We don’t know any different. This will be our normal.”

The counselor, beside the geneticist, lights up. Maybe there’s a box to check for this. The parents are not in denial and. Whatever comes after that and is what we have just confirmed to her.

I think about her a lot right now, how hard her job must be. I’m not sure everyone opens with jokes about eyepatches. I’m not sure everyone saves their crying for the car ride home.

V

They tell us not to learn sign language yet. We ask if we should and they say there’s not a reason to assume the palate will cause him to be deaf. But they can’t know. But they can know to tell us not to learn the signs yet.

Some mornings I wake up and think I should, just in case.

Everything these days seems a variation of just in case.

VI

Hilary finished her first year of graduate school in philosophy yesterday. For a year, she has been fascinated by and defending the argument that disabilities are not incompatible with living a good life, advocating for what a philosopher she loves, Elizabeth Barnes, calls the mere difference view in which it is understood that the blind, the deaf, the immobile, and others are able to experience distinct and sometimes superior goods to those who do not have those conditions.

She took her logic final after the ultrasound in which we learned Jackson doesn’t have an eye.

This is the evidence. I draw no conclusions. This is only the evidence.

VII

Let’s talk about miracles.

Let’s go ahead and settle the accounts.

Do I believe that Jesus can heal Jackson completely? Yes. I do. I believe we’re supposed to keep praying for that until Jesus says stop, until Jesus says to let go and take the fullness of the gift of who Jackson is however he will be. Miracles of surgeons and miracles of God are not so far removed when you believe everything is caught up into the life of God in Jesus Christ.

So yes, pray, please. Pray over his life passages of Scripture. Pray over him wild hopes.

But then prepare for it being different. Merely different.

And don’t say he’s God’s special prop to teach all the “normal” kids something unique about God. **** that. My child is not a prop of the divine. My child is not different looking for the higher purpose of making you comfortable that it’s not happening to you. And, in turn, don’t say a word to us about how brave we are, how impressive, how amazing. (Unless it’s a moment when we really need it, which will be clearly indicated by also being the moment you need to offer wine.)

Jackson is not something that happened to us. He is a child of God who has been entrusted to us. He is an image of God. He is a metaphor for God like you and like me.

So miraculous healing? I’m all for it. I’m still praying it. I’m praying a lot with Martha of Bethany, who knows how to march out to Jesus and let him know what he’s capable of doing just in case he forgot.

Who is capable of accepting what Jesus tells her when she does.

VIII

Some of you are reading about this in a blog post for the first time and you wonder why. You wonder why you weren’t called. You wonder why you weren’t emailed.

I’m sorry. I’m going to take it on faith that you’ll let that go and just say you understand that right now, today, writing it out again and again, talking it out again and again.

The parents are both not in denial and. The parents are both and.

IX

His name means God is faithful.

He was named before he was even a thought in our hearts.

X

While he was saying these things to them, behold, a ruler came in and knelt before him, saying, “My daughter has just died, but come and lay your hand on her, and she will live.” And Jesus rose and followed him, with his disciples. And behold, a woman who had suffered from a discharge of blood for twelve years came up behind him and touched the fringe of his garment, for she said to herself, “If I only touch his garment, I will be made well.” Jesus turned, and seeing her he said, “Take heart, daughter; your faith has made you well.” And instantly the woman was made well. And when Jesus came to the ruler's house and saw the flute players and the crowd making a commotion, he said, “Go away, for the girl is not dead but sleeping.” And they laughed at him. But when the crowd had been put outside, he went in and took her by the hand, and the girl arose. And the report of this went through all that district.

XI

If he’s not healed miraculously by the supernatural, if he’s healed by the miracle of surgery, he’ll have Christ Pantocrator eyes.

The Syrian icon of Christ Pantocrator has differently-shaped eyes. One is smaller than the other, slightly lower. This is to represent to us, to keep us mindful that Jesus both sees us particularly—humanely—and entirely—divinely.

So when I hold Jackson, after the first surgeries, after his face begins to close and form as best his little body can, I’ll be holding an icon of my Savior.

In the second garden, on Easter Sunday, Jesus still has his scars. Scars are signs of new creation.

Don’t tell me in heaven Jackson will have “a normal face”. You don’t know that. I’m not convinced that’s how it works.

I think in heaven his scars will be signs of new creation. On this earth they will be signs of what is to come.

XII

Today is a good day. Some days aren’t so good. There will be more good days. There will be more not good days. There will be NICU and team meetings and coordinating holidays when we can’t travel.

There will be us. All of us. The three of us. Three of us and the Holy Spirit of God.

This is not a post about soliciting pity or comfort. This is a post about the language we will use, outside of checking the boxes for how we feel, how we’re processing.

Jackson Yancey, unless miraculously healed before birth, will be born without a right eye and a facial cleft on his right side, that extends from his lip towards the eye socket.

At this time, they are not worried about hearing loss or vision loss from left eye. At this time, his parents are as expectant and joyful as ever to have this precious gift in their lives. At this time, his parents are prepared to yell at him when he hides his prosthetic eye in a sibling’s bed. At this time, his parents are so glad that he was our first.

He made us the family we are. He is making us the family we are.

All the light we cannot see. He is bringing all of it in already. The parents are both and. The parents are wildly in love.

Periods. No question marks.

After

This is not a return to blogging. I'm still only writing through TinyLetters, which you can subscribe to here. But this belongs here, among the past, looking forward. This belongs here. Like he belongs here.

[Read what his mom has to say.]

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