Ghosts Without Faces

A few days ago my son, Conley, unleashed a huge smile. It was his first smile that we could trace to something other than flatulence or poop. He was lying in my lap and I was blowing on his hair and he grinned so wide I thought I was going to cry. When I stopped blowing, he stopped smiling. When I started again, the grin returned, opening a chamber of my soul that I never knew existed and turning my heart to hot wax.

Every milestone is important for our little man. As I’ve written extensively in the past, he has issues. A rare genetic disorder called Van Maldergem Syndrome. A hypoxic brain injury suffered at birth. Six weeks premature. This confluence of events puts him behind the eightball and leaves my wife, Caitlin, and I in the strange position of not knowing what our son will be capable of when he’s older. The spectrum is so vast: from cerebral palsy (or worse) to completely fine. The ocean of unknowns has been the most difficult part to process. If we knew how he was going to be, we could prepare for it. What not knowing has forced us to do is take Conley’s development one day, one milestone, at a time, instead of worrying about what we can’t control years down the road. This approach has allowed us to enjoy our baby for what he is: a beautiful, happy four-month-old who casts a spell on everyone he meets.

That being said, there are some things about Conley’s condition we know with certainty. He has mild-to-moderate hearing loss in both ears because the genetic disorder made his ear canal non-existent. He can hear a dog barking or a helicopter taking off, but he misses out on the nuances of speech. Our audiologist told us we probably sound like we’re underwater to him. But his inner ear, the part that actually does the hearing, works fine. So about a week ago we received BAHAs (bone-anchored hearing aids) and Conley put them on for the first time. This opened up a whole new world. The sound on those things is remarkably clear. A bit tinny, yes, but good enough for him to understand everyday conversation. A huge win for his speech and language development.

He has other issues, too, like low muscle tone, clenched hands and clubbed feet. He’s also eating through a G-tube because he isn’t able to take enough volume by breast or bottle. All of the medical professionals we’ve talked to are encouraged by the fact that he has an instinct to suck. So we remain optimistic. A couple of weeks ago, Conley’s pediatrician announced during a routine check-up that Conley was “going far.” Doctors generally err on the side of caution, so to hear her explode with such pure and positive emotion gives us hope. He’s hit every milestone thus far: He’s holding his head up. He’s smiling, reaching for things. Following objects and people across his field of vision, which is a good sign, given his brain injury. Yes, his physical growth has been slow. But not disconcertingly slow. There are more positives than negatives right now, which is incredible, given where we could’ve been at this point. But he has a long way to go.

Let me tell you about one of the best things ever. Conley sleeps without his hearing aids on because they’re bulky. He’s been waking up earlier and earlier each morning in anticipation of being able to hear. As soon as we put them on, he smiles and coos and looks around the room like everything is brand new. It’s heartbreaking and inspiring. Heartbreaking because he’s unable to hear so much of the world on his own. Inspiring because the technology exists that allows him to hear at all

I sometimes think about what would’ve become of Conley had he been born, say, 300 years ago, before all of these technological advances. I guess the answer is he wouldn’t have survived. There would’ve been no G-tube, so the 18th-century version of Caitlin would’ve been desperately trying to feed him by breast and failing, over and over again, until we simply had to accept the grim truth that our son could not eat and would die. I try not to think about that because it’s an awful thought. But sometimes it creeps in and I have to deal with it.

It’s hard to believe that Conley is in the world. How strange it is that he was once an abstraction, an idea, and now here before us, in the flesh and beautiful. In how many different ways could he have been arranged? Genes are mysterious and unpredictable. In some alternate universe, perhaps he looks exactly like me, instead of Caitlin. Or he was born full-term. Or he was born female. Or without a genetic disorder. It’s cliche to say, but Conley is perfect in his own way. I wish he didn’t have issues that will make his life more challenging. But maybe they’ll make him stronger. More resilient. More prepared to conquer the world.

My grandpa, who went by the nickname Speed, died last July, before Conley was born. He was a bull of a man. Six-feet-six and 250 pounds in his heyday. A head full of thick white hair until the day he died. When Conley was born the first thing I noticed about him was the broadness of his shoulders. And then, later, after he’d been cleaned off, his thick head of hair. I wish the two, Speed and Conley, could’ve met.

Having a child has illuminated the fact that every adult was once somebody’s precious little baby. I’m a firefighter, and I ran a call yesterday for a 74-year old man with chest pains. We’d gone to this guy several times before and he was on a slew of medications and always seemed to have a difficult time breathing. In his yard were a couple of cars that looked like they hadn’t been driven in years and a shed with a half-collapsed roof. The grass in his yard was overgrown and ivy was creeping up the columns on his front porch. As he laid on the stretcher in the back of the ambulance, I saw a childlike fear in his eyes and it dawned on me that at some point a mother held this man as a baby in her arms and thought he was the most incredible thing in the world. Now here he was, at the opposite end of life, lying in an ambulance, his eyes beady and scared. Deep inside we are all continuously befuddled by this strange place we must inhabit.

Deep inside we are all still befuddled by this strange place we must inhabit.

Earlier in the day, a 23-year old girl overdosed on heroin while driving and split a thick tree in half. The hood of her car was decimated. When we arrived she was blue and unconscious (on account of the heroin), but otherwise uninjured. As I helped her breathe with a bag valve mask and the paramedics cut off her ragged clothes, I thought about how she wasn’t that far removed from childhood, that two decades ago she was a baby with pure eyes and a gentle heart. I’ve found this approach of picturing adults as babies to be a good means for conjuring sympathy for people who may not readily deserve it. Like people who overdose while driving and risk killing others. “She was once innocent,” I remind myself. “And now she’s very very lost.”

The inverse of this is also true. One day the pure babe that Caitlin and I (OK, mostly Caitlin) soothe at night will lose his innocence and be swallowed up by the world. One day he will hit puberty and the rest is history: he’ll grow dark hair all over his body and discover his sexuality and make mistakes and thrash about until he settles on an identity that suits him. The world will wear on him, as it wears on all of us, digging circles under his eyes. This suffering is inevitable. One day Conley will have to deal with our deaths, just as we’ll have to deal with the death of our parents. It goes round and round like this. The only thing I hope is that through our love, we’re able to sturdy him up, to build him into a person who can handle inevitable suffering without being destroyed by it. Without lying blue-faced in an ambulance.

Think of family trees. I’m not talking about just your great-great-grandparents, but further back than that. Much further back than that. Those long-dead people you aren’t familiar with yet wouldn’t be here without. Think about all the small decisions they made that, if made differently, would’ve changed everything, would’ve led to you not being born, or at least being born in a different form. Isn’t all this unfathomable? Those distant precursors to us thought they were living for themselves, or at the very least for themselves and their kids, and probably wasted little time thinking about their place in the grand lineage of it all. We’re all merely links who, for a few brief moments, determine the shape and direction of the rest of the chain, a chain that will stretch on long after we’re gone, hundreds and thousands of years into the future, to distant descendants who will have no inkling of who were, only that we must have existed in some form for them to be as they are now. All of us are precursors and descendants. All of us are destined to become ghosts without faces.

Yesterday I cried tears of joy for the first time since my son was born. Conley and I were lying in bed, staring into each other’s eyes, and I was telling him about the world. About music. About art. About beauty. He was watching me so intently and with such a sense of wonder that when I smiled at him, the corners of his mouth turned up into a smile. He reached out to touch my face a few times, which is something he wasn’t able to do a week ago. I could see the wheels turning in his mind. He was trying to figure out what I was all about, what the world was all about. It was this recognition of his soul, with the two of us lying there close together, that finally unleashed the tears. He grows so quickly that sometimes when I get home after a 24-hour shift it seems like he’s doing things he wasn’t able to do before. To watch a young mind grow, to see a child take in new experiences each day and expand outward is awe-inspiring. Especially when this child sprang from you, sprang from your wife, and you can see yourself and her and all the recent and distant precursors swimming there within his watery beautiful iris.

I want to take my son into a field of beautiful wildflowers and spin him around, swirling, with my wife beside me, until the three of us are dizzy with the brilliance of existence. I want to feel the dew and the sun. I want to keep spinning until we cross the threshold and blast off, into an unfathomable galaxy, far into never-ending darkness, until our bodies disintegrate and our cells are sprinkled back into the universe, the mother universe from which we came, of which we have no real knowledge, but only slight guesses, like here is this thing that is expanding outward and will continue expanding outward (into what?) until it all comes crashing inward and pulverizes everything that is and everything that once was. For no other reason than to begin again.

What a place, what a life.

On some mornings I take long walks through the holler, down past an old house made of river stones, past immense green pastures, past churches that have been around since the early 1900s. The goal of these walks is to meditate, to meld with nature, that old chestnut, but I unfailingly think about things, because the human mind does nothing if not think and worry. I end up considering the past and the future, what strange circumstances brought me here and what strange circumstances will act on me in the future. I also think about how this beautiful place, in these soft mountains, here in the heart of Appalachia, will be home for Conley. It’s home for Caitlin and I, too, of course, but we had other homes before this one. For her, home will always be Roanoke. For me, it’s Richmond. The two of us lived in Austin together for a couple years (and she, alone, in Malta), yet these places were not homes but brief detours on our journey.

I want to take my son into a field of beautiful wildflowers and spin him around, swirling, with my wife beside me, until the three of us are dizzy with the brilliance of existence.

This idea of moveable homes goes back generations. Caitlin’s dad was born in Kentucky, so that place is in his heart. But he also lived in (and fell in love with) St. Petersburg and then, of course, Roanoke. Home for my parents is Western Pennsylvania. That’s where my dad’s family has lived since my great-great-grandfather moved to America in the mid-1800s. For him, home was Hochstadt, Germany.

Do you see what I’m getting at? Home floats. The place we think of as home is based on where our parents chose to end up. This is why Caitlin and I wanted to move somewhere beautiful before having a child, so he could have a grand place to hold in his heart as home forever.

Sometimes when I think about my father, I think about the time we went deep sea fishing off the coast of North Carolina. We got up at the ass-crack of dawn and boarded an old fishing vessel led by a curious dude named Amp. Amp was about 5-foot-4 and maybe 98 pounds, but as his name implied, he had the energy of a pig in heat. Over the next six hours found out where he got his nickname and his energy from: there he was, out at sea, drinking Mountain Dew Amp energy drinks at a dizzying rate. That son of a bitch could fish with the best of them, though, either because of the Amps or in spite of them.

About three hours into the trip we ran into a giant school of mahi-mahi. Fish were practically flying onto the deck. Amp was shouting, this is it, boys, here we go! I had no idea what I was doing, but I grabbed a rod and tried to get after it. I must’ve looked lost because my dad came over and grabbed the thing from me and went to work. He did this in an attempt to help me, not demean me, but Amp could see that despite my father’s good intentions he wasn’t allowing me to learn for myself. So Amp said, and I remember this clearly, hey, pops, ya gotta let your son grow up sometime. So my dad handed the rod back to me and let me reel in a few.

At least that’s the way I remember it. At the time, I recall feeling embarrassed, like I wasn’t a real man or whatever. But now that I’m a father myself, I understand how that scene proves my father is a good man at heart, that he was just looking out for his son, that he just wanted the best for him. What it taught me is that there’s a time to grab the rod and a time to step back and let go. There’s no instruction manual telling us which one is the right play and when. Fatherhood is figuring that out for yourself.

When my grandpa came home from World War II, he built a house for himself with help from his dad, Wilheim Christoph. Neither of them had built a house before. But as my grandpa once told me, sometimes you figure shit out. During the building process, they’d often get into these huge blowout fights. My grandpa would be on a ladder, yelling down at his dad to go home if that’s the way he was going to act, god damn it. And his dad would storm off, only to return a few hours later to continue helping with the house.

“The fights only sounded bad,” my grandpa once told me. “We were always on the same side in the end. He only wanted the best for me.” The two of them eventually finished that house, working mostly in the evenings after my grandpa got home from his day job as a cook. It cost about $6,000 in materials, and my grandpa lived there until the day he died, at the age of 96. It’s still standing. Go see it if you want. It’s at 522 Pattison Street Extension in Evans City, Pennsylvania. The little white house just off the road.

I guess the biggest thing about fatherhood is that I’m no longer just living for myself. Everything must be changed, or at least altered, to make room for this brand new human being, this tiny human being with big moods and big needs. What I’m learning, though, is that I need not sacrifice the things I love just because I now have a son. It’s more about learning how to to reorient myself, to divide my time in a meaningful way so I’m tending to my son’s needs while also tending to my own, because after all I’m a human being, too, who needs to do and feel certain things to feel happy and alive. We cannot spend every waking hour thinking about baby, although some days it feels like we do exactly that. We must go out into the world and interact with people, if for no other reason than to remind ourselves that there’s a world out there to interact with in the first place. We must take walks, play with the dogs. We must listen to music and read and write. We must not give over our entire identity to this child, this blank and beautiful child, stuffing him full of the dreams we never accomplished. We must continue living for our own dreams, while raising our son with so much love and kindness that he feels empowered to live for his own dreams, too — the dreams that he conjures up for himself, not the ones that we unfairly place on his head.