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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