I saw my son at the stop light. On FB on my phone, in a photo of a group of boys at his step-brother’s birthday party. My Sammie. Except, he died on Sept. 18, 2019, and this picture was taken after that, at his mom’s house. Yet, my desperate brain grasped at fantastical hope as my breath stopped and my heart raced in one of those infinite moments our perception of time only subscribes seconds to, interrupted by the movement of cars with the green light I notice via impatient honking behind me, because they too need to get to the moments they’re chasing. I drove just outside Chateaugay and pulled the car onto the shoulder. My fingers trembled as I enlarged the image on my smart phone. It wasn’t Sammie, and tears waiting in reserves I reinforce with psychological dams to stave off incessant crying poured from my eyes and over my face, with my roaring scream – aaaaaaaahhhhhhh - like in the shower after a dream in which I saw a boy that looked like Sammie yelling (like my son did in the ICU in NYC), running across the top of this long building. That’s my boy, I shouted in my head and raced over as he ran off the edge, oh please catch him, and I did, Sammie, in my arms, my world healing like Tony Stark’s finger snap, my boy, cuddling him and kissing - a stoic face with empty eyes that are not my son’s, as I sob myself awake, and – aaaaaaahhhhhh - in the shower, hitting my head on the wall and staring at the handicap bar Sammie held to steady himself, our singing and laughter echoing out of the house, like my demands to rewrite the past, in the shower after the dream, powerless pleas clinging to winter’s breath in hopes they are carried to some part of the universe that could give me my son back.
Four long months. A second-by-second degradation within an unbearable life sentence. I thought returning to journalism would help. I couldn’t remain working in intensive care at the hospital in Plattsburgh, surrounded by reminders of Sammie’s last days in the NYC ICU, a witness to suffering a parent’s brain is not meant to endure, singing to my boy for hours, because more fentanyl prolongs the addiction that was created there, but when he screams and twists in withdrawals his heart races and pounds to the point it will stop again, and singing to him calms him just enough to skip a dose or two, so fuck you doctor saying I have to sleep, because Sammie’s Mama and I will do whatever it takes in that place we eventually made the decision that broke us, because everyone did do everything they could, and it wasn’t enough... No, I knew I wouldn’t be able to function in the Plattsburgh hospital where it started. Where I watched Sammie’s heart rate plummet and knew from being on the code team what was about to happen, witnessing a man I love and worked with, tears in his eyes as he performed chest compressions on my son, saving my boy for NYC…
I’ve been to the Plattsburgh hospital once since, to sign papers. I battled hyperventilation as I approached, heart racing and pounding, sweat soaking my clothing as I turned to my wife and pleaded like a terrified child, “I can’t do this.” I thought maybe the universe felt my anguish when I resigned and then logged onto jourrnalismjobs.com to find an opening a little less than an hour from where I lived. I’d spent nearly 15 years as a journalist. Each day had been like getting paid to play.
But we take ourselves, wherever we go.
Monday through Friday, departing the house at 8 a.m. to write stories, leaving around 9 each night and screaming – aaaaaahhhhh - in the dark driving home from Malone, face drowning in tears – aaaaaahhhhhh – as I pull over because I can’t see – aaaaaaahhhhhh – as I hit the steering wheel and beg – I want my son back, and, I want my boy back, and, I want him back, over and over and over until no sounds pass through my raw throat and I shake and sob and text his mother to ask if she screams, because it helps, but only for a moment, because the only relief no one can give, but telling them anyway when they ask what they can do – “Give me my son back.”
My brewing rage is not aimed at anyone. Sammie’s way of living joyfully and honestly and lovingly taught me to see people’s hearts and intentions and not to judge. I don’t blame anyone for my son’s death, despite the mistakes… I’m seething because I want Sammie not gone from my painfully empty arms. I miss the pressure of his slender (yet strong) frame stretched out on my chest and belly, on my back when I carry him hiking, straining my forearms and biceps as he bounces and squeals while we groove to I’m Yours by Jason Mraz. So, I run till my joints ache and punch the heavy bag till my knuckles bleed, and I scream – aaaaaahhhhhh - straining my throat one night driving home from work, pulling into the bar and ordering a shot of Knob Creek and a beer and scolding my wife texting with questions on how to help, because I hate that no one can provide the relief I need, placing my phone on the stool beside me to save her a seat and relishing bourbon’s warmth down my throat and in my belly as a man with a chest like a fridge approaches and eyes the empty stool, my brain saying in that moment if he attempts to take the seat I saved I’ll grab the back of his head and bash his face on the wooden lip of the bar, again and again, except he didn’t, relieved as the rage passes, but if he had…again in Taco Bell’s parking lot after someone nearly backs a mid-sized Nissan into my wife’s pocket-sized Honda Fit, my brain explaining as I pull beside the man waiting to exit his car that if he comments on my honking I’ll crush his head in his door, again and again and...
I don’t attach anything to the feelings and thoughts passing through me. My life has partially become about not taking on weight – I’m too heavy already - that will loosen my grip on the edge of the ledge, constantly learning what I cannot handle as I reposition my aching fingers with every choice. Like when my wife arrives at the bar, hurt in her own grieving and afraid for me, and I say I don’t care and take another drink and apologize – because I do care – and explain through a torrent of tears that I can’t expend energy on her in that moment, choosing instead to hold on, to survive, because my mind is on the verge of exploding into sharp fragments, pieces I won’t be able to put back together, shards of myself that will bleed others worse than the choices I make without hesitation, that selfishness literature on losing a child says to embrace if I’m to emerge on the other side in a way I can live with, or alive, even, knowing none of this is fair, not for me, not for those who endure me, and though it doesn’t seem possible, I suspect there’s a more desperate level of darkness in the abyss…I won’t come back from that, and my end goal is to #belikeSammie.
People sometimes tell me I’m doing that now, and I hate they don’t see me, make me feel I’m being dishonest and therefore dishonoring my son who was true to himself and with others in everything he felt. I remember the prior me, before laughter was filtered through grief, hollow sounds I don’t recognize, like the face in the mirror I don’t want to be, grieving two people, whispering, Be gentle. But I must lower walls to do that, and more pain waits on the other side, invaders that already won the battle but gain strength consuming the remains. So, I avoid the mirror. My reflection in windows. I cuddle with my wife, but only with her back to me and the distraction of a movie on. She knows if she turns to face me, for intimacy, I’ll cringe, and cry in the corner of the couch (where my son and I always cuddled) with Sammie’s Scout in the green t-shirt I bought my boy that boasts of adventures. I don’t see my step-daughter. Don’t play with her in the house we lived in with Sammie, hard and loud, like we all did, because I’m too weak to do that now without being overrun by the agony of the absence of my sweet boy. How cruel, to snatch that joy from a small child who lost her step-brother, but that’s me now, terrified and coming up short trying to #belikeSammie. Reminded of it when they don’t see me and say I am, like him. Or maybe I feel dishonest because they see slivers of me within the chunks that are most of me now that I hide. Because it’s ugly? But it’s real, and another reality is I don’t want to be here anymore.
Loved ones say life is still worth it. So, I chase moments that might convince me this agony isn’t pointless. I spent five days on the Long Trail, the first day with a man I love like a brother. We shared stories. He held space when I sobbed. I spent four more days on the Long Trail, singing and talking to Sammie in the thickness of the forest and over the ice-dipped tips of the mountains, feeling him with me, the weight of the pack on my back my son, like before. But always wanting him back more. Once when my mind suggested bidding the agony farewell, thoughts of sleeping uncovered on the trail and freezing in the night looping like lullabies coaxing me to my end, the ring of my cell phone startled me. Sammie’s Mama shared a message of our son’s journey now and I listened and sobbed, my beautiful boy, once again, lending strength, and I overcame, like he always did.
After that, I chased moments with Sammie in Vermont’s Green Mountains on the weekends, appearing out of my head to those I passed, this long-haired, bearded man with his walking stick, speaking with my Sammie they can’t see, singing to him, reaching back to caress his head and kiss his cheek during moments I carried him on my back so we could cuddle, racing my boy on the way down. Fortunately, Sammie and my daughter, his older sister Darby, taught me long ago to not concern myself with how others might perceive the moments I choose to live in. Lending strength to their fear only steals the beautiful.
But then I started 12-hour days at the paper, 14 counting the drive to and from work that soon included bourbon I sipped from a flask, because there’s no time for therapy, and what’s ugly becomes hideous without something, a choice to maintain my grip, though I also desire to let go, hoping no one smells the liquor but also not caring, but also hiding the sips from Scout in Sammie’s shirt in the back seat, and yeah, okay, I need more fingers to count the mounting triggers for the PTSD, and it’s alright I sometimes want to take my own life as long as I don’t. But wait, I’m telling stories again. The WWII veteran who lost so much in war and says kindness is all that matters. The preacher who overcame abuse and addiction and walks through life with empathy and focuses on leading her new flock to God through love. The middle school boys who saved their choking classmate in the cafeteria…except after I interview the boys I’m guided to where it happened and surrounded by children Sammie’s age as sweat dampens my undershirt and forehead, heart racing and pounding, and I know the principal sees my hand shaking as I try to take notes and ask questions that make sense, pausing to breathe deep and slow, stumbling out and collapsing in my car and sobbing. Does my editor see the tears while I’m at my desk writing? Do the women in the office near the men’s room hear me bawl over the sink? Do the people outside the bathroom where I’m on assignment hear me trying to catch my breath as I cry after seeing a father say to his boy, “give me five,” like I did with Sammie, and still do with the air, pretending my son’s hand is there, catching our fingers together and squeezing as I say, “Yeeaahhhh,” my right hand giving my left hand five, so I can feel pressure there again… They must see my face when I exit. None of them will look at me as I sit taking notes. Me, worrying again what others think, lending weight to their self-involved impatience and judgments and lack of empathy, and fuck, now I’m creating stories and judging. Failing and not strong, like when my boss texts while I’m driving to work that I need to stop where they found the body of a missing boy, except I’m terrified and pull over, because, another attack, and no, please, another parent can’t hurt like me, and just give me my son back, taking another sip from my flask, and another, until maybe I’m a danger and might take a loved one from someone else, and fuck man, you had maybe a drink a month before this. End it! The pain…just take off the seat belt and drive fast and into…But wait, my boss is going to cover the story, and I make it through another day, until later that night, taking a corner a little too quickly, like a race-car driver…and I remember pretending to drive fast with Sammie in the back seat, laughing and squealing and so much beautiful… I don’t remember parking, but I’ve been crying in the car for 20 minutes, and now I’m late, rushing in relieved to discover they haven’t discussed “that issue” yet, but clearly have an “issue” with my appearance, and the tears I’m wiping, and my bloodshot eyes and how I can’t respond when one of them gruffly says, “Yer clock not workin’,” because if I open my mouth, the sound will scare them.
But there was that calming moment. That time I got lost and called it a night. I plugged my address into google maps and ended up on a Class-4 road covered in snow with no hint of tire tracks, falling apart in places, with a sign that says closed for the season, except I can’t stop and turn back into that slippery and steep, initial descent, winding 10 miles an hour over three mountains, barely breaching high points as my tires spin, nearly sliding off the road infrequently marked with seasonal camps, a blackness in my rear-view mirror that wants to swallow me as I take inventory of my clothing, because I might have to walk as the temperature nose-dives…and the realization I could die is more peaceful than anything since my son died. No more pain. No more trying to envision a future without Sammie. All my dreams included him…But then I panic, because on the drive home at night I follow a route I found that takes me past Sammie’s mom’s house so I can sing to my boy as I near the home and call out, “Hey boobers. Hey Sammie-Sam. I love you, buddy,” and sometimes for his mother and I, it’s like Sammie is on his week at the other’s house, and Monday I’ll drop him off to her, or she, to me, and I know that’s not real, but Sammie needs to hear me sing and say hi tonight, clinging to things now, like not moving his toothbrush in the shower, and pictures and printing and saving them in multiple places in a panic, and crafts he made at school, and toys he touched and clothes he wore that no longer smell like him because I did laundry before…and then I’m past the Class-4 road and scream – aaaaaahhhhh - because I made it, and I don’t like this life with the only freeing thing that I no longer fear death.
End it. But I can’t. I’m a father, and my daughter is already grieving losing her brother. Darby helped raise Sammie. I see him nestled in her lap as she strokes his head, the love in their eyes for each other. Darby and I recently cried together at the bar over a drink as we shared stories. Like the time years ago she called in a panic and I rushed home from the newspaper to find them both covered in poop, Darby, half wrestling, half cleaning her brother, who giggled and tried to wiggle free as I stood there a few seconds and laughed, my heart reminding me again of what I already knew - that I love being a father above all else. Ask me what I want to do, and my answer is always, “Play with my kids.” I ain’t sheltered. I’ve been a carpenter, landscaper, taught in prisons, journalist, factory worker, editor, pizza and sandwich maker, soldier, mentor, painter, even held a job for a few years in a hospital that had me one second, drawing blood, another second bathing a fragile patient and yet another second performing chest compressions. I hike, kayak, play basketball, earned a black belt and competed in full-contact fighting tournaments, strum a guitar, fix old typewriters, run, dance, hunt, fish, travel, volunteer, make walking sticks…I don’t have enough time for all the things I love, yet absolutely nothing compares to time with my children. I’ll never forget when I saw crown, amid the primal roars of childbirth my daughter’s tiny head of curly hair, in my arms, my first love as the universe pulled me aside and whispered, “You’re welcome.” I had a special set up on the couch, pillows piled on either side of me in case she rolled, my daughter, sleeping on my chest until she was too big. And then Sammie came – “You’re welcome” - and slept on my chest too. I still remember the last time he slept there, shortly before…
My children provided me the strength to shed addictions to dysfunctional coping skills forged by my childhood sexual trauma, to become a me I loved unconditionally. Not perfect. But a me I was proud of and celebrated. A me who loved unconditionally, even the ones who hurt me as a child, and without any expectations of those individuals. That is a gift. Fatherhood never felt like work, though I knew the greatness of the responsibility. I was beautiful at being “Dad” and “Pa,” and selfishly felt blessed that Sammie would never leave the house as typical children who become adults do. I had so many more adventures planned. I was going to buy a truck and show Sammie every inch of the country. He loved trucks. Sammie and I were going to hike every mountain. Kayak in all the rivers and lakes and oceans. I couldn’t put my kayaks away for storage this year. They’re slumped under snow because if I go near…all I can think of is that empty space in front of me that was Sammie’s. I can’t imagine floating across the water without the pressure of his body in front of me, without his giggles and him squealing “Pa” excitedly (and more recently deeper with his little man voice) as I take us over waves so big we soak ourselves.
I knew Sammie’s heart episodes could get worse. I figured he’d get a transplant. We’d continue our adventures into his 20s, 30s, 40s. Sammie thrived. He had so much energy, hardly napping unless we wanted to cuddle. He baffled doctors, who said the love we surround him with, and more importantly, Sammie’s will and strength were the only explanations for a boy who lived so joyfully and lovingly and with so much energy. There were no outward indicators of the heart inside Sammie, other than the heart episodes and seizures once a month or every other month. More than 85 percent of the time, Sammie defied expectations. And when he did struggle, he never complained, choosing instead to smile and live lovingly, appreciative of his beautiful life. He could get frustrated, like we all can, but if you monitored him beside “typical” individuals, you’d quickly see that Sammie, despite the adversity he faced, was overwhelmingly more joyful and pleasant in comparison. My son taught me I can choose to live life lovingly and kindly and joyfully, with empathy and strength.
I remember a surgeon from overseas, a member of the heart-transplant team in NYC, said Sammie would not be a candidate for transplant where he was from. Not a contributing member of society, because he’s not independent and doesn’t financially feed the economy. When I consider the rampant isolation in a crowded world, the indifference to cyclical struggling, the pursuit of “things” at the cost of human decency, I’m disappointed by that definition of a contributing member of society. The doctor seemed to agree that the world needs more models like Sammie and his way of living that would go infinitely further in healing society than concentrating on money matters.
I used to be so strong. I need to find a way up. To #belikeSammie. I remember when he’d sense (or see) me struggling. He’d climb into my lap and gently put his hand on my cheek. Snuggle with me a bit. He understood empathy. Does he feel my worsening agony and desperation now? Am I stealing time from his new adventures?
I recently left my new journalism job as part of choices aimed at helping me to the other side of this in a way I can live with. I’m in Vermont now, cradled by my siblings and the Green Mountains. My wife says I sometimes let my guard down when she’s here with me. I laugh and hold her tight. I believe her, though it’s difficult for me to see through the ever-present agony glaring at me with its jagged teeth consistently shredding more of my heart. Sammie’s Mama thinks I didn’t have enough support in New York, beyond my wife, who is also grieving. I found a part time job up the road from my brother’s. Stocking the cooler, sweeping floors and taking out recycling and trash at a little store nestled on the crest of a hill, owned by an Indian family, three generations living in a log cabin. I long for their community. My sister took me to my first meeting of Compassionate Friends, a group of parents who lost children. I sobbed all three times I tried to talk about Sammie. I worried the group could become one of those misery loves company things, like how you can sometimes tell where people are in life by the music, books and movies they immerse themselves in. But it doesn’t feel like that. I’ve seen too many people let logic overrule their feelings to the point they lumber around like clubs, smashing everyone over the head with logical suggestions instead of providing empathy. And at that first meeting, I saw pure love in the eyes of one mother who lost her daughter, leaning forward as I spoke and trembled, and in the smile of another mother who lost a son and gently touched my upper arm for a few seconds after we held hands in a circle at the end of the meeting. I felt connection and empathy there. It comforted me, to know it’s ok I’m a mess as parents in the group uttered, “It only just happened,” and how consumed and overwhelmed I must be…not in a good place. I think that’s why I currently find the the Indian family so appealing, agreeing when they say they’ve noticed that in the United States, most people seem intent on surrounding themselves with “things” over loved ones. Maybe I’m waiting for someone to save me, because I am failing saving myself right now?
I created a purpose to keep myself going. I plan to write two books. A children’s story too. All connected to telling Sammie’s story. I’ll pursue traditional publishing with a goal of further growing the #belikeSammie Award, possibly create a foundation. I also hope the process will help me want to live again, because I promised Sammie I’d be strong. For myself. For loved ones. I brought my heavy bag. I’m running. I scream. Now that I have the time, I’m connecting with a grief counselor. Something…because the agony is with me every second in everything I do, and I’m exhausted. I can’t even catch a break in my dreams. Shortly after Sammie passed, I’d have a reoccurring one, always in a different setting, in which I’d see Sammie and be so happy, but then I’d notice something off about my boy, and then I’d remember he’d passed and wake up crying. There are dreams like the one with my son screaming and running off the top of the building. I also sometimes dream Sammie is in my arms and appears fine, until something tells me he only has two weeks to live, and I hold him tight until I wake in tears squeezing myself. My dreams aren’t difficult to dissect. No matter how hard I tried and what anyone says otherwise, I feel I didn’t keep my son safe. Thankfully, I don’t replay in my mind whether anything could have been done differently. I’m already tortured enough.
Sometimes I think when I’m done these books, I’ll also be done. It’s a peaceful thought. Living this pain seems pointless. The absence of Sammie is unbearable. Maybe being brutally honest and writing this is a first step toward the other side. Usually a blog takes me a few days. This one has taken months to write. I break down every time. But in the past, exposing myself through writing helped loosen the grip of what seemed to control me. Sammie was honest in everything he did. I want to honor my son. I’m forcing myself to do routine things every day to recover – create - myself. But what if I’m in my own way? Not allowing myself to move on, because the level of acceptance I know logically I’m afraid to reach emotionally. By creating this new me, I must wholly accept an absence so overwhelming I sometimes desire to deny that most primal animal instinct to survive. Or maybe part of me feels moving forward betrays the son I feel I couldn’t save? I spent nearly 13 years basking in the beautifully blinding purity of Sammie’s unique light, and perhaps I’m not strong enough to live without…to learn and share…how Sammie’s condition and others like him who seem so simple at a glance, in fact live more brilliantly than most typical people saddled by bulging baggage they could unpack if they had my boy’s strength, but instead crowd everyone out endlessly dressing themselves in clothes that don’t fit. If I could walk with Sammie’s lessons into a new reality… Or maybe this loss is just too raw for me still, and I’m expecting too much of myself at this point, allowing to seep through my cracks expectations, opinions… I must remember, I am the captain of my ship, guide it the best I can (with all that I can) through these raging waters, with acceptance that I could break against the rocks, plunge over the edge and drown.
All I know, right now, for me, there’s nothing so crushing and agonizing as the weight of my empty arms…
Painting by Darby Bartlett
This lifestyle/memoir blog contains mature content, some of which could trigger some people. These posts are the author’s honest recollections to the best of his ability. He acknowledges that sometimes people remember things differently. Some names, locations and other identifiers have been changed to preserve anonymity. Author is not providing medical, legal or other professional advice, and all opinions expressed here are that of the author.