My wife woke up at 3:35 on the morning of the second day of the 23rd week of her pregnancy. There were no contractions, there was no pain. She just had to pee. She soon discovered something was amiss. We called the nurse. The nurse inspected and calmly summoned the calvary. Half an hour later, Alexander was born. My wife asleep, summoned temporarily beyond consciousness. A nurse took a few photos with my wife’s phone for us. They had me stationed in the hallway between the delivery OR and the NICU. Before they brought him through, a doctor stepped out and I jumped up from my chair where I’d been worrying my wife’s rings around my pinkie. He informed me that wife and baby had made it through surgery, that baby was eleven inches long and he weighed, let’s see—580 grams.
I said, Really.
I am an emotional silencer. I dampen the noise of the soul.
We had to wait five hours after delivery before we were allowed to see him, because with a micropreemie like ours they don’t just have to clean them, they have to get them all set up in the rig that keeps them alive, with all the wires and sensors and stickers and gauze and lights and pillows and blindfolds and earmuffs and blood pressure cuffs and IV drips and respirators and microdiapers not large enough to fasten around the equator of an orange. The diapers are what got to me. They fetched us a pair to keep for the scrap book. Smaller than a postcard. I had to leave. His fingers are made of wax and vein and his legs are swollen up and bruised deep purple from the delivery and yet still down at the end of them are toes that look like my toes, that crinkle and move and flex like my toes, and I needed to leave the room.
I said something like I was ready to go, but Gretchen wanted to stay, so I walked out alone from the NICU bay where Alexander lives now, his second womb, but I could not remember which turns to take and I spun on my heels and spun back and back again, nearing a panic. Someone saw me and asked if I needed something and I said, Help me, please, I can’t find my way out.
In the waiting room I clung onto my father-in-law and cried fiercely and then my sister-in-law and cried again. But when later on, when I took my brother-in-law to the NICU, I didn’t stop explaining things to give him the opportunity to reckon with what he was seeing. And the next day, again, I took my mom back to see him and found myself doing the same thing. Any moment that seemed to drag on too long, I filled with noise, with words, activity, I explained what I knew and what they’d done so far and who was working on him, or I spoke to Alex and told him he’s doing great and that his mother will see him again soon when she’s feeling better, or I addressed the gravity in the room directly and didn’t let others feel it for themselves.
And now, for no reason, here’s an orange in a diaper:
Last night, my wife and I got into our first fight since the baby. It was a nonsense fight, borne of frustration and lack of sleep, and there was no time for it. I said I was sorry and she said she was sorry and we made amends quickly because we had to be awake again in an hour to pump.
I only bring it up because I am acutely aware of how lucky I am. Monday was the anniversary of my brother-in-law’s passing. One time while we were on a trip to Cleveland, aka Detroit’s only source of self-esteem, I was in Ben and Sarah’s hotel room. It was towards the end of the day, and Sarah was bustling around the room completing the tasks required of the able-bodied wife of a man with ALS. Ben was about a year into his diagnosis. He still had some range of motion in his arms and legs but couldn’t stand on his own, and he couldn’t talk so much as make throat sounds guided by his mouth shape. He had a particular noise he made when he was trying to get Sarah’s attention, and he was making it every time a commercial came on. Ben and Sarah did not listen to commercials. That was a rule. Probably more of a Ben rule, but a rule nonetheless. They turned them down when on the radio in the car, they muted or changed the channel when they came on television.
The problem was that Ben’s noise did not have an indicator of severity, meaning that “I can’t breathe” and “That Slap-chop guy is on again” were indistinguishable from one another. So every time he made the noise, Sarah immediately went into four-alarm high alert, which even for just a microsecond will run you ragged if this happens over and over and over again. Because she wasn’t paying attention to the show, she was busy setting up his travel-wedge for sleeping, or readying the handicap shower, and every approximately seven minutes she had to pause in doing these things, first to restart her heart, and second to either mute or unmute the television.
Eventually she snapped, and raised her voice, and basically told him to knock it the hell off, and what should’ve happened next was a fight. But fights require words, and Ben’s mouth could no longer make those. He sat there as if on pause, his expression doing its best to say I didn’t mean anything by it, I was only asking for a simple thing, and by the way I have a horrible disease you’ll recall so please cut me some slack. But the trouble with expressions is even if they express accurate emotion, they are not situation specific any more than Ben’s noise was. So the same expression could’ve been used for, say, being walked in on while pooping. Like hey, I know there’s a smell but I didn’t mean anything by it, it’s a perfectly simple and natural thing that everyone does, and by the way you walked in on me, let’s not forget, so whose fault really is this.
My point is they couldn’t fight. They couldn’t address the tension in the room. It just had to sit there, with everyone marinating in it, until like with a fouled-up restroom someone opened the door to let out the funk, which if memory serves was my job, little twenty-six-year-old me, hopping up off the bed and excusing myself back to my own room in the hotel to jot down the details quickly before I forgot them, because the moment felt large to me, important for me to understand.
And now I am here, big thirty-seven-year-old me, a father for almost three full days, and my wife by my side, literally, getting some much-needed sleep before I wake her up again in an hour and half for another milking, and I feel so incredibly lucky that I’m having trouble comprehending why everyone is giving us money. I’m almost offended by it. When the prospect of a fundraiser kept coming up, my attitude at first was sure, why not, I’ll take people’s money. I mean, I’ve always needed money and right now is not exactly an exception to that rule, so if people want to make themselves feel better by chipping in a few bucks for the cause, then great. Go ahead. It’s not like we won’t make good use of it. We have plenty of bills and plenty of debts. But we do have insurance, and kind, giving parents on both sides who we’ve leaned on plenty in the past. It never occurred to me that we might need more help than that.
All day I’ve watched our fundraiser creep closer and closer toward its goal, barely twenty-four hours in and we’re almost there. And like with my brother-in-law, or with my mother, I am stubbornly resisting these expressions of emotion. I want to sit down with every single person who has donated and explain to them that Alex is strong, you see? Don’t you understand? There have been only minimal complications so far. He doesn’t have any -cardias or -opathies or any other scary suffixes. He doesn’t have a hole in his heart, or hernias, he’s not deaf or blind. All the problems he has are surmountable. His bruises will heal, his tear in the skin of his back is being treated, he’s moving, he’s breathing, he’s eating, he’s peeing. I get to see him every day, any time I want. I can argue with my wife when I need to. I can argue with my wife! Can’t you understand how lucky I am?
People are still sharing their own stories with us, usually with positive outcomes but with complications in tow. Like my wife has pointed out, throughout all of this we’ve never felt alone, and I thought hearing stories like these was the most valuable part of this experience so far. But the donations keep coming, and it’s getting to the point where I have to reevaluate my initial gut reaction, and that may prove the more valuable social contribution to me in time. I haven’t cried in three days now. Alex hasn’t so much as opened his eyes yet; how can I know he’s not blind? How do I know he’s reacting to my voice? How can I be sure that a heart so small isn’t hiding a hole even smaller, or won’t develop one?
I guess what I’m saying is all of this love, from the people with experience as well as from the people without, from the 338 people who have shared our fundraiser so far (!!), from all of the astoundingly kind people who have shown their support with donations of all sizes, all of this is making me come to terms with not just the present but the many possible futures. Including the tragic. Including the hardships and difficulties of raising a child with a severe disability, which challenges I honestly welcome with open arms because it would mean that I still have a child, and anyway I have seen disability at its most severe and I all but challenge the gods to come up with one worse enough to scare me, which is pure arrogance on my part and I should not take such things so lightly. But mainly the dying, it’s the dying that could happen, still. He’s not out of the woods, yet. He’s not even out of the incubator yet. He’s not even two pounds yet and the host of things that could kill him range from the microscopic to the accidental, to sheer bad luck. Like a power failure. Do you know how many machines I am relying on right now to continue operating without a hiccup? They have to, though. They will. This story will not end like that.
I can’t imagine a future right now that doesn’t involve me holding Alex in my arms, kissing his forehead, taking him for walks on the beach strapped to my chest like Kevlar. I don’t want to focus on the tragic futures, but I shouldn’t be pretending they don’t exist, either. Too many people are sharing too much wisdom for me to ignore it. They are literally paying me to see it. This situation is serious, and it will take all of me to get through it, and even then I might not. My luck could run out. I’ve never considered myself a lucky person before. I don’t know how long this run could last. And yes, truthfully, that terrifies me.
But, you guys…he is really strong though. He’s determined, and feisty. Tough as beef jerky, which makes sense because currently that’s what most of his skin looks like. I’ll promise to let myself cry sometimes, and let you cry, too, but you have to do me the favor of believing me on this one. Most all of you haven’t met him yet. You haven’t held his hand. I’m not trying to brag, but I have never been more impressed or more proud. Or more lucky.
A fact I will try to remember when, in five years, I am arguing with him to put his damn shoes on and get in the car already, we’re going to be late.
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