Two weeks ago, Jack could have died.
We had our best friends over, visiting from Belgium, along with some very good friends we've made here. There was cauliflower stained yellow by turmeric broth that I was beginning to pour a masala over when Hilary came into the kitchen, eyes wide. "I need you right now."
Our night nurse, misunderstanding our instructions that no one was supposed to touch Jack's tracheostomy but us, had attempted to change the tie holding it in place by herself. Jack had grabbed the trach and pulled it out. He then panicked, unable to breathe in the position he was in, and the nurse panicked a bit too. She hadn't kept the smaller tube handy, which you must always do when handling the trach. She had not gotten one of us, because you always have two people on an infant when handling a trach. She had assumed it would be fine, then it wasn't. She attempted to get the trach back in, but it wouldn't quite fit because of how upset Jack was and she nicked a blood vessel, causing him to bleed from the stoma. The nurse came to get Hilary while she was in our bedroom pumping, holding our panicked child, bleeding from his neck, trying to get into a position where he could breathe.
Hilary got the smaller trach in. She came and got me. We both got the normal trach in together. We suctioned it like we usually do, though this time until we didn't see red anymore. Then pink. Blood in his lungs. The stoma stopped bleeding. We handled the sterile materials, took out our gloves and cotton tip applicators and our wound cleanser. When we were in the hospital, doctors and nurses always asked us if we were in the medical field because of how at ease we were with the protocols. Jack calmed down, the nurse checking his vitals while we did the real work, the work to make sure our son would keep breathing.
When we take him to see his ENT and trach nurse, this story is not scary to them. It is not scary because they trained us so well, because they know we can handle it when this happens, because Jack was okay, because this is the sort of thing that can happen when your child has a trach. Because this is normal.
Looking at each other when the trach doesn't first go in well, when he's bleeding in front of you and rolling his eye back into his skull, this is normal. Not hearing the sound of your baby's voice unless something is wrong, unless the trach is out, is normal. Knowing what must be sterile versus clean, that those two words do not mean the same thing, is normal.
Walking out and asking your friends to go home because of what has happened for them to look back and you and say, "We had no idea. You never seemed panicked." This is normal.
Spending the night on the couch holding each other and crying because sometimes your kid might die in your own house, on a Tuesday night, while you're making Indian food and introducing good friends to each other and drinking wine and there's serrano pepper oil on your hands that you need to get off before you touch anything that will go into your son's body because it could hurt him when you put the device back into the gaping wound in his neck—this is normal.
There is a poem I love that ends, "Making the circle without God."
In two weeks, my second book, Out of the House of Bread: Satisfying Your Hunger for God with the Spiritual Disciplines releases.
What if I released a book and nobody bought it?
This is a legitimate question I am asking myself these days, because since we got back from the NICU I have done next to nothing to promote the book. I still believe in it; I'm proud of it; but, I'm not exactly sure what to say about it anymore. If I were a better marketer, I would tell you that I spent my time in the NICU applying the principles I wrote about in the book. I would tell you that the disciplines I explore there were the same that saw me through deciding to put a tube in my son's neck that risks his life if it comes out. I would tell you how okay God and I are with all of this. I would tell you all the things that all the blogs with chevron patterns tell you, in soft, heavy breathing tones: "Ohhhhh, but God. Ohhhhhhhhh but God."
Here's what I did in the NICU: I simultaneously begged God to heal my son and I told God to go to hell.
There's a good chance I lost half my audience with that one piece of honesty. But I'm not a good marketer and I'm an even worse Christian.
Years ago, on a mild March afternoon, in a park somewhere on the edge of the city, I sat on a blanket for seven hours with a never-less-than-half-full red plastic cup of untouched cheap wine, and saw a complete production of Angels in America. Angels is a complicated play, about the AIDS crisis in the mid-80s, connecting a variety of people around questions of politics, faith, and the literal absence of God. In Angels, God has abandoned heaven, leaving behind a few of the heavenly host to make prophets of humans as they see fit. (Misguided as they often are.) The play—a secular humanist church service if ever I have attended one—is often shunned by Christians for its frank and graphic content.
What offends us most, I wonder? Perhaps the doubt, the question, that God has actually abandoned us after all? I will not forget the afternoon on the grass, the wine I did not touch, the slow unravelling of people on stage coming to grips with a god who is not, as the atheist would speculate, merely inexistent, but is worse: a god who leaves, who gives up, who says we can just try and figure out the mess ourselves.
“Longing for what we left behind, and dreaming ahead,” murmurs one character at the close of the play.
I sat by Jackson’s crib in the NICU, watching a pulse oximeter measure the oxygenation of his blood. The numbers hovered around 98%. 99%. 96%. 98%. 84%. At the last number, below 87%, the first alarm sounded. A pulsating, cautionary alarm. At 76%, it would turn louder, violent. If we didn’t reposition him to open his airway, get him back above 87%, then the bare minimum of needed oxygen was not being supplied to him. In the long run, his brain and other organs would atrophy. In the short term, he would asphyxiate. He went back up to 98%. 99%. 96%. I prayed to see 97%. I prayed for just one uptick on the monitor. Just one small elevation. One deep breath.
I thought a lot about Angels in America in the NICU.
What they don't tell you about writing books is how much of the marketing you'll be responsible for. The endorser list, key influencers, friends you are supposed to petition for their favor and Twitter followers.
I was beside Jack's bed in the NICU when I got the email about the endorsers for Out of the House of Bread. Contractually, I was supposed to care about it. At the time, I said the list they suggested was fine and put my phone away.
When we came home from the NICU a month later, I was supposed to work on something that could be given away for free when you preordered the book. I agreed to this. I thought I could do it. I thought I could write out the things you write out, thousands of words in addition to what you have already done, committed to the hustle. Committed to the brand.
We found our night nurse sleeping and not paying attention to Jack. He's so stable. So okay. Until the minute he isn't, which is the minute you need to be awake for.
We fired the nurse. We stopped sharing a bed. I was awake until 3 AM and then Hilary up with him until 9 AM. We went on like that for three weeks. I didn't write the preorder freebie.
Maybe that was because of sleep. Maybe it's because I'm not sure what to say.
I find it hard to be a Christian on the Internet right now. Not, it may surprise you, because I find it hard to be a Christian. I believe that God is more than capable of handling my anger and grief. God doesn't flinch when I get mad at God for the fact that my son faces serious medical complications. God lost a child once. I don't think God begrudges me the pain.
But it's not safe to say that online. It's not safe to say that unless you tie it in a bow. It's not safe to say it unless you make it okay. But it's not okay. We thought God was going to completely heal our son. And though God did heal some things in Jack, God did not heal Jack completely.
Stop. Stop right there. Full stop.
That's the line that doesn't have an answer. That's the line that cannot get better. That's the line that you can't explain away. Because you know why God didn't fully heal Jack?
Exactly. Your guess is as good as mine.
So right now, God and I are having some long talks in which I am very sassy and very frustrated and very anxious. So when the larger digital Christian community keeps talking about influencers and gatekeepers and being on brand and the next new hip thing to do in church and the next printable, I feel how at-capacity I am.
Today I got out of bed. Today I played with my son and passed a tube into his throat to suction out secretions that, if they build up, means he can't breathe. I crossed myself. I recited a prayer. That's the measure of my faith right now. All things considered, that's pretty good.
At least it's a faith I recognize in the Psalms.
We kept an icon of Jesus the Good Shepherd and an icon of Martha of Bethany in Jack's crib in the NICU. I love Martha. I love how she was willing to walk out to Jesus and demand to know where he had been, why he had let her brother die. In our tradition, we believe the saints alive in Christ pray alongside us. I’ve thought often these months how Martha must be praying with us, asking Jesus where he has been. Even after Jack was born, still looking at Jesus: “Even now you could do this. Even now.”
When I was a senior in high school, I read Angels in America alongside the book of Job for a unit on theodicy in my literature class. Theodicy is the question of suffering coexisting with a seemingly good God. If God is good, why is there pain? In Angels, the reason is because God doesn’t care, God is not good. God has abandoned the post and left humans to try and work out the world for themselves. In Job, God has abandoned nothing. God has watched the measure of suffering unfold, tragedy by tragedy, and gives no response to Job about its purpose other than the reason is beyond his understanding. Job’s foolish friends, so eager to find fault in Job, are mocked by God for the inferiority of their imaginations. They assume suffering is only the result of sin. God both elevates Job—these pains are not from his sin—and rebukes him—can he contend with the Almighty?
I am comforted by this. God replies to Job. Job calls God out for the suffering, for the pain, and God answers.
Job belongs to the genre of literature we call Wisdom, a story instructive to us about how we might relate to God and to one another. Job teaches us that God has not abandoned heaven. God has not left the post. God is right here. And if we dare, we might bring a charge against God. If we dare, we might risk God answering back.
I am not a philosopher, but I find this a decent enough theodicy. (The part where we can challenge God. I’m not yet so convinced about the rest.)
I need you to buy my book because that's what I'm supposed to be asking you to do right now.
But I need you to understand that right now I also just need to hold my son and feel that he's still breathing in my arms.
We go on walks, God and I. I'm quieter than I used to be. God is, too. I think we're both in recovery.
Something from Angels clings to my spirit. A final monologue, spoken by one character as she takes a night flight to San Fransisco, looking for a better world:
It’s been years since I was on a plane. When we hit 35,000 feet we’ll have reached the tropopause, the great belt of calm air, as close as I’ll ever get to the ozone. I dreamed we were there. … the ozone, which was ragged and torn, patches of it threadbare as old cheesecloth, and that was frightening. … Souls were rising, from the earth far below … [they] joined hands, clasped ankles, and formed a web, a great net of souls, and the souls were three-atom oxygen molecules of the stuff of ozone, and the outer rim absorbed them and was repaired. Nothing’s lost forever. In this world, there’s a kind of painful progress. Longing for what we’ve left behind, and dreaming ahead. At least I think that’s so.
God has not abandoned heaven, but there is still a kind of painful progress. I look at Martha, watching Jack, the Good Shepherd beside her doing the same. They hang in our living room now. Somehow they understand. Somehow the incarnation is about being the stuff of ozone. Somehow the partnership of God with us is about being the stuff of ozone. Somehow thy will be done is about being the stuff of ozone. Somehow, painful as the progress is, we’re repairing the ragged and torn in ourselves. God with us is repairing, God with us is making us the stuff of ozone.
At least I think that’s so.