My son could pass any time. I’m not wading in a puddle holding frayed jumper cables with bared teeth, offering an electric embrace. But it’s a good hook. Snagged me. ‘Dad joke.’ I’m a dad, and this truth surrounding my son burrows in an enclave of my mind, below a collection of scenarios I could spend hours and days and months playing out, of what could happen to Sammie. Probabilities that don’t pay rent, running up a tab that keeps me in debt. Past-due bills on my baby, my boy…
… becoming a young man whose upper lip I shave in the shower, because he can’t manage on his own as I sing and he giggles and grips the handicap bar, hot water kissing our flesh, shaving him too because I don’t want him looking too grown yet - that bundle born early with the weak heart and its unfettered capacity for love, as eyes pry themselves to tiny slits that note a glimpse of me, standing outside the glass looking in - in a society where their toleration of him fades with the cuteness they ascribe to him.
It doesn’t feel good to imagine people feeling uncomfortable around my child one day. Is it in their nature? Don’t remind us of our fragility. Perceived flaws. We are all more vulnerable than we admit, and we’ll only tolerate a reminder and offer it compassion, if it’s cute. It’s ‘natural’ any us could pass any time too. We don’t escape that. Keanu Reeves said, when asked what happens after we die, “I know that the ones who love us will miss us.” The chances my son could die at any moment are far greater when contrasted with typical life expectancy. Samuel Benoit Bartlett was born with 1p36 deletion syndrome. His mother and I, upon hearing the diagnosis, were like, “What the fuck is that?” It wasn’t discovered that long ago. We’re still learning about it. The unknown is terrifying, especially when it’s bound to what you love most. Like what the fuck is his life expectancy? I try not to dwell on that, but even if I avoid it all year, that one day, those seconds I think about it, defeat me. There’s nothing safe about love you give yourself completely to…
…this fragile child not much more than three pounds, seeing me watching him from beyond the glass as I muster strength and say “I love you,” that nose that I want to be mine - his eyebrows are his mom’s, and so much his strength - along with the cheeks and ears as we hold him those stolen seconds we reclaimed after they said not until later, because he could die and must be rushed by the team, in his box like Wonder Woman’s plane, over the bridge that connects to Boston Children’s, where they’ll work toward us holding and kissing him more and bringing him home, our son, home, “yes please” so much that we want, overwhelmed and grateful and scared in that moment they see something stronger in him, so maybe it’s ok to hold him a few seconds, our reason in our arms, although maybe too it’s because he came quick (after days of prodding because his heart was too weak to wait longer), a foot on my shoulder and a push, just four of us when he slipped out sooner than they’d just projected, the team not there yet, so yes, by all means, hold him close, maybe for the last (only) time?
Sammie was born Oct. 22, 2006, in Boston, with its rush-hour roads like buttered spaghetti noodles stirred in a bowl. Lost and honked at in this city with the best doctors. The team extended us an extra-special invitation. They didn’t know what was ‘wrong’ with our child (in his mother’s belly), affecting this world he’d not met. Just that his heart beat too shallowly and too quickly. “I’ve never seen anything like it,” said the first doctor in Plattsburgh, who looked as you’d expect, lanky, white coat, frazzled, pale gray hair, spectacles on the edge of his nose. He’d been practicing medicine more than 25 years and sent us on the ferry to specialists in Vermont. Vermont directed us to Boston Children’s…
…and the team explaining our puzzle of a child and his pieces that don’t fit, that they don’t know how to arrange, which is difficult to balance with my early capacity to love him and need to see a picture of him, Sammie, Sammie-Sam, Lilboobers, the latter a name his mother invented that I adopted because it’s yet another way I tell him I love him, and I want there to be limitless ways, each instantly rendered inadequate when love grows so fast you’re sometimes chasing it.
What if I can’t hold him anymore? Hear him laugh and say “Pa?” Right now, writing this, my heart breaks. It’s heavy, what the brain can create as experience. “Stop.” It’s too much. Instead, I focus on…
…hugging and kissing and being, and anything but him not in my life, because losing him or his older sister – once the prospect of losing her existed (before Sammie’s birth), an erratic message from my first wife, my daughter’s mother who never should have had alone time with her, halfway ‘cross the country, and in that moment the fabric of my mind tearing, a fissure in my brain as I scream at my second wife to tell me my daughter’s okay, that event the reason “K-PAX” with Kevin Spacey holds space in my heart (despite Spacey), a testament to what would happen if my sweetest girl had been taken, my mind creating another home to set my hat, because the place I was almost hurled to looped agonizing deaths – is not an option.
1p36 deletion syndrome is a congenital genetic disorder. Sammie’s mother and I were tested. Not carriers. A fluke the medical field attaches theories to. Children and adults like Sammie are moderately to severely intellectually impaired. 1p36 is characterized, to varying degrees, by delayed growth, hypotonia, seizures, limited speech ability, malformations, hearing and vision impairment, and distinct facial features. Sammie underwent open-heart surgery at Boston Children’s at 10-months-old to repair a ventricular septal defect and atrial septal defect. No words describe what it feels like kissing and squeezing your child, knowing he might not survive as they wheel him away to cut and crack him open. His mother and I waited in a moment that whispered, “I could end you.” I felt the power in the judgement the surgeon carried as he approached post-procedure. I went stiff and held my breath until he said it had gone well, considering the prognosis. But when he took us to our baby…
…code alarms hammer the silence, and it can’t be us, because he said it went well, yet now he runs with the others toward Sammie’s bed – monitors and cables and machines for breathing and beating - and it is us, pausing in our recognition of what that means, his mother, only for a second, because this is her baby, and she’s always been stronger, going to him as I stumble against the wall in the hall stretching in my head - taut and close to snapping (again) - the distance to where they work furiously to make sure Sammie will still please be here with us, because I can’t lose my boy.
I meditate to the image of when he opened his eyes for the first time and weakly grinned back at me smiling down at him as I rubbed his forehead with my hands scrubbed clean, leaning over the rails as close to him as I could.
I revisited my son coding post-procedure during my first code as a critical-care technician in my hospital’s intensive-care unit - the job I’ve remained in longest since leaving journalism. I knew working at the hospital I could be involved in a code. I wondered how I’d respond. Imagined in my head acting heroic. You don’t know ‘till it happens. My first 12 months at the hospital were spent mostly repositioning and cleaning patients, taking vitals, drawing blood, feeding and walking them to the bathroom, changing bedpans and dumping urinals, scanning bladders and charting. There were also one-to-ones to protect mentally altered patients from themselves. I’ve been punched, bitten and doused with liquids, though typically you sit there in case and put more energy into staying awake than anything else. Intensive Care is a different beast. My first week off training, I heard, “Code-99, Intensive Care.” My colleagues…
…racing to the room, and it’s Sammie in Boston and I’m scared, but unlike then when he needed my strength, I run too, with the doctor and nurses, the family outside watching as I stand on a stool doing chest compressions, by my third turn in the rotation, dripping sweat onto the man, whom we save, still in the room I tell another technician something funny, for a few seconds laughing, quietly but visibly, because it’s my first time, and adrenaline and what I was part of, like in ER with George Clooney, except those are not cameras filming so viewers can gape later in their living rooms, they’re frightened family members of the man we saved, watching as I alter my face to exude concern and compassion, after, the director in passing says be aware of our surroundings, and I tag her suggestion to the mental note I took as soon as I retracted my giggle, knowing she’s not worried nor criticizing, because I was new and proved myself.
I’m grateful I’ve remembered during the chest compressions since, to be aware of my surroundings. Not everyone makes it. There’s sometimes hoping and praying family members there when that happens too. I know how families of patients feel. Before my son, my daughter, who struggles with an aggressive form of Crohn’s disease, introducing me to intensive care, surgeries and sleeping in an uncomfortable chair beside her hospital bed every night for an entire summer, talking each morning with my (teenaged) baby ‘till doctors rounded, while she naps, running from the Vermont hospital, destressing and pumping my legs on paved and dirt paths along Lake Champlain, heart pounding as I sprint back up the hill to the hospital to escape that constant sense of teetering toward panic and to be with my little girl as she regains strength for surgery to remove things inside her she uses. Staff who lifted mine and my children’s spirits during hospital stays, despite unaltered prognosis’s, nudged me to pursue the medical field after journalism. I’m privileged to care for people at their most vulnerable. A passion that is also a penance that this story’s not about.
Sammie will always need people to care for him. He splits his time between his mother and I, a reality tagged to the penance that, again, this ain’t about. They released him home after extended intensive-care stays in Boston and Vermont post-birth. He was barely five pounds. Weak and fragile, with an NG tube to feed him that his mother and I switched out when needed. You’re never told, when you discover you’re going to be a parent, about possibilities beyond changing diapers, like measuring tubing inserted through his nose (head arched just so, feeling for that slight give), and into his stomach. Sammie barely avoided surgery for a permanent peg tube in his abdominal wall when, at the last moment, he gained enough strength to eat on his own. Physical, speech and occupational therapists worked with him in the home before he was school-aged and continue to support my boy. He sees a pediatric cardiologist every six months for his heart, and a neurologist for seizures. No doctor who has cared for him had heard of his condition before Sammie. They’re near as clueless as I imagine all 1p36 parents were when first hearing “1p36 deletion syndrome.” Our children are fragile mysteries thrust into our lives that make us stronger than we imagined possible and are stronger than we’ll ever be. Sammie’s 12 now, though more like a toddler. He can walk unassisted, but not too far and not without someone beside him in case he falls over. He mostly crawls and walks holding onto something. I honestly don’t know how much he understands beyond what is obvious, like when he signs he’s ‘all done’ eating or I’m ‘all done’ doing whatever is now annoying him, like getting in his face too long to tell him how much I love him while tickling him. He has fewer than a dozen words he’s able to use to express himself, “Momma” and “Pa” among them.
Sammie was recently evaluated for a heart transplant. The numbers aren’t good. For example, a normal heart’s ejection fraction is more than 55 percent. Ejection fraction is a measurement of how much blood in the left ventricle is pushed out with each heartbeat. How well your heart pumps out blood can help diagnose heart failure. Below 40 percent may be evidence of heart failure. Sammie has dilated cardiomyopathy with an ejection fraction of 19 percent. He has tachycardia and low blood pressure. His heart is extremely enlarged and over-working. His pediatric cardiologist reviews the echocardiogram and expects to see a sickly child, who barely moves, exhausted and on the verge of passing out and/or vomiting. Instead, Sammie laughs and squeals excitedly and yells when angry. He moves quickly and with purpose. He’s all wiry muscle, can hold himself in a crunch for extended periods and eats like food might run out. Doctors upon meeting him doubt his medical background. Sure, they think and grin, your child clearly faces struggles in life, but you’re being a bit dramatic mom and dad. Then, they see blood pressures and heart rates, review echocardiograms and files, and they are in a stir, announcing to us - as if they were the ones to enlighten us with his diagnosis and prognosis, like they discovered 1p36, and holy shit we must save your child - that our “son is really sick.” When we don’t feign shock and awe, they view us skeptically, almost accusatory, and repeat, “Your child is sick!”
The transplant evaluation resulted in Montefiore confirming the obvious: Sammie needs a new heart. But he’s also got a damn good quality life, especially considering, and they were hesitant to exchange the heart-failure symptoms he’s tolerating (for now) and thriving in many ways with, for another host of transplant symptoms, that perhaps negatively impact his quality of life. His life expectancy’s unknown. Maybe don’t mess with the good he’s got. He has more good days than bad. It’s the support and love he receives, enhanced by the massive amount of love he provides and exudes, this boy with the sickly heart. We don’t possess adequate tools to measure the value of love. He’s testament to its power.
His mother and I agreed with holding off on a transplant. It’s a gamble. Besides the condition of his current one, roughly two years ago he started struggling with episodes that present as supraventricular tachycardia (SVT). A few years or so before that, it was seizures that came in waves, some – either one long one or several short bursts - lasting an hour or more, eventually knocked out by emergency meds. Over time, we stopped bringing him to the emergency room. We administered the prescribed emergency drugs on our own and then monitored and cared for him during a typical two- to four-day recovery period, keeping him hydrated, ensuring he doesn’t asphyxiate while vomiting, regulating fever to prevent seizures from returning. These ‘typical’ seizures occurred every few weeks or so for a stretch and then eventually decreased to every four or five months or so.
Then, hello SVT, which is a rapid heartrate that develops when normal electrical impulses of the heart are disrupted. Frequent episodes can weaken the cardiac muscle over time. Sammie’s heart is already failing. The episodes started occurring monthly, sometimes for several days at a time, anywhere from three to nine or more a day. Sammie, I imagine thinks his heart is going to explode from his chest. An electrophysiologist at Montefiore in NYC aggressively tried to trigger the SVT for a few hours to attempt an ablation in hopes of stopping the episodes. Yet another time, his mother and I kissed Sammie before they wheeled him away after a doctor with a British accent matter-of-factly said the procedure is risky given Sammie’s heart. There’s a chance he could end up on ECMO, a machine that bypasses the heart. A last resort which hardly any children with hearts like Sammie’s come back from.
The electrophysiologist was unable to trigger SVT, yet the episodes, registered and recorded, continue. Specialists are perplexed, and in their defense, Sammie’s condition is being studied. Most of Sammie’s medical data is collected, along with that of other children, to help create a clearer picture of the syndrome. Does his heart cause the SVT-like episodes? Is it a new type of seizure that sends his heart rate as high as 240? A normal adult heart rate is 60 to 100 beats per minute. Sammie’s able to respond through his terror during the episodes. Specialists say any one could be his last. His heart can only take so much. Sammie comes out of them on his own and with help, through emergency medications and actions like dipping him upside down so he struggles up and creates pressure in his chest. Sammie has more good days than bad, but imagine, several times a day, sometimes a few days a week, one or two periods a month…
…his terrorized eyes furtively seek me, reaching for me, my boy unable to speak, needing me, “Pa,” to calm this heart pounding under my hand when I pull him against me like it will burst from his chest with each hammering beat, Sammie wondering as I dip him (because he can’t follow commands like, “grasp that and bear down,”), why I keep letting him fall toward the floor, pleading without words, grabbing at me as I worry this one is the one his heart can’t handle and reassure him everything is alright, almost panicking when dipping doesn’t help, waiting and opening emergency meds, 30 seconds, a minute, more than two and even three minutes that contain eternity in each second of the threat to take my son, feeling my head stretch toward a split, like it nearly did that time with my daughter, like Kevin Spacey in K-PAX, except Sammie pulls through each time, my boy, exhausted and sometimes vomiting and passing out, making sure he does not asphyxiate, because he’s not strong enough to move his head when he pukes, hours and days monitoring breathing and heartrate and hydration with a syringe, but carefully, because what’s the point in protecting against choking while vomiting if he aspirates and gets pneumonia, which kills kids like Sammie.
It’s the same for his mother, when he’s with her. We support each other and belong to an online group of families from around the world with loved ones diagnosed with 1p36 deletion syndrome. That network is vital, especially when a parent loses a child. Too many angel wings. All us parents suffer from PTSD. I can be a dick when my energies are needed for stressors related to other people I love. It’s not fair to them. There was a period I worked overnights in the ICU and sometimes saw Sammie in the hospital beds, in place of the patients, on a ventilator, hooked up to medicines and monitors. Yet this experience has helped me come closest to the best version of myself I can achieve. A version I didn’t know was possible. Witnessing Sammie’s strength, consistent happiness and capacity for love, despite his struggles, has created within me an outlook on life, a perspective, I’m grateful for. And ultimately, all this is eclipsed by the other parts of life with Sammie…
…beside him on the couch or the bed, and he reaches and caresses my cheek, loving me as big and pure as I love him, bigger, because for all Sammie’s heart’s failings and weaknesses, its capacity to love and inspire love is unmatched and uniquely his and that of others living this unique reality, providing the gift of their life. Sammie, with that serious glance that makes me want to know what’s going on in his head, and all the beautiful tales I tell myself it might be. Sammie and an old man walking by with French fries, my boy’s head snapping to follow his favorite food when all of us with a stake in his life wonder how much and how quickly he pays attention, seeing he knows more about what’s happening around him than we realize as the elderly man who is part of the discovery seeds our staked claim with love when he notices Sammie’s interest and asks is it okay to share, tears burning my eyes when this man doesn’t care about the drool on Sammie’s hands in his fries, the old man responding to the eager sounds Sammie makes between mouthfuls, and in so doing, inviting my boy into the world in the back of my mind I worry people might not welcome Sammie to, excluding with their fear and lack of understanding, but not this old man with his fries watching baseball under the sun. Sammie, with the way he says truck “chrk” to anything bigger than a car and loves to ride the lawn mower and in his step-father’s pickup, which is why I fantasize about buying a big, shiny, new truck with the money I could make if a publisher buys a book I write. Sammie, and every time “I’m Yours” by Jason Mraz comes on the radio, stopping what I’m doing to scoop up my boy and dance, fueling a thousand lifetimes with that feeling as he bounces and laughs and says “Pa.” Sammie, sticking his hands down his pants as boys do and as men would do more too if social constructs indicating that’s inappropriate didn’t exist. Crossing his legs - the “1p36 cross” parents in the group call it - when he’s tired and sleeps. Bouncing on the trampoline. Walking around the yard holding my hand and saying “Pa” over and over and over, with me, saying “Sammie” back, though really, we are mostly just saying “I love you.”
And Kayaking with Sammie…
he is loving, and hikers on the trails in the woods peer through spaces in the trees to witness what they want to be part of too, pausing in my paddling, reaching around and pulling him against me when he’s strayed too long, feeling him close as I exchange the rhythm of moving us forward for the rhythm of his heart beating.
Sammie loves the waves. The muscles in my arms, chest, shoulders and back burn when I push us toward big ones. We nearly rolled once, and since he doesn’t understand, “You gotta hold your breath,” he might swallow water. That won’t stop us. Sammie has the right to experience life to its fullest in all the ways he can too. You don’t live life when you do it in fear. I can hear Sammie howling wildly now as the front of the kayak smacks the water that splashes his face, his ecstasy breaching the waves, through the trees, echoing off the rocks.
I push my arms till they ache when I kayak by myself too, dashing across the lake in spurts. At a certain point in each clip, I balance the paddle across the kayak in front of me, the blades cutting the air licking my face as I lower my hands and slice the water. I close my eyes and sink into what my son feels when he’s tucked in the boat in front of me. I open them and watch my hands dance in the water. Becoming his hands and mine. Becoming love.
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.