Equal doses of dark humor and human drama coming up, because what are we without the capacity to find joy in the darkest of times? Politically correct.
My Little Metalhead
Any proper couple with metal, goth, geek and generally unusual leanings must have the most unique name for their offspring. My boyfriend and I refrained from deciding on a name until late in my pregnancy; indeed, I played around with several name combinations a week before the baby’s birthday. On September 24, 2011, Sorin Kristian (because every boy must have two first names) plopped out after three-and-a-half hours of labor, easy peasy. The epidural catheter almost messed up my QR code tramp stamp, and I had a couple of nurses and interns remarking on my tattoo through the haze of local anesthesia.
The name game was extensive. I nixed the usual list of Goth baby boy names, not wishing my child to be saddled with an appellation exceedingly weird and taunt-worthy. Paul Atreides did not seem appropriate; axed it because dad wasn’t much of a Dune fan. Most of the Game of Thrones names had a medieval English feel to them, which made them quite prosaic. I didn’t feel like saddling my son with an Elven name, whether Sindarin or Quenya. So I turned to the place where we both felt at home: music. To be more specific, metal.
Fear not, I was not about to confer something cringe-worthy like Necrobutcher on a baby. Nergal was already taken by my orange cat. My black metal documentary watching binge led me to consider naming my son after a black metal luminary. But no Fenriz or Faust for my little one; I preferred to do a bit of research on these crazies’ real names. Scandinavian names sounded cool, anyway. I suppose it struck me that two of the scene’s most notorious members, Gaahl and Varg Vikernes, shared the same given name: Kristian. It was doubly ironic that none of them were, in any way, shape or form, Christian.
To complete the pairing, a companion name must be found, preferably something vampiric-sounding, because of hubby’s Goth origins. I thank a passing familiarity with Magic: The Gathering (and my friend the jologs lolcat) for showing me Sorin Markov’s illustration. He was some vampiric Planeswalker, if you’re into that thing (I personally appreciate the complexity but I’d rather look at the art).
Perhaps my unhealthy fascination for black metal has angered the Powers that Be, and they have conspired to punish me through my newborn son.
Hole In My Heart
The time for Sorin’s two-week checkup arrived, and I was only too eager to bring my chubby, healthy son to my longtime pediatrician. He happily feasted on a combination of breast milk and milk formula, and went through bottles like a hurricane. A rosy picture of health, I assumed; aside from a livid red birthmark on his right thigh, I fully expected him to be physiologically normal.
In the waiting room, my boyfriend carried Sorin in his arms, playing and cooing to him, just like proud fathers did with sons. On purpose, he was late for work, so that he could take us to the pediatrician’s clinic. I urged him to leave, citing the long wait for the doctor, reassuring him that I’d be able to handle everything.
“Magdasal kayo ng mabuti, at magpakabait kayo (pray hard, and be good),” the doctor remarked while listening to Sorin’s chest with her stethoscope. Her face was a mask of concern, not unlike the times she diagnosed Sorin’s older sister, Selene, with dengue fever. However, those instances never resulted in anything that necessitated a complete conversion of my damned soul. The first stirrings of worry began to surface inside me.
The initial diagnosis came: from the heart murmurs the doctor heard, it seemed that my son’s heart had a Ventricular Septal Defect (VSD), a hole in the central wall of muscle separating the two ventricles. She handed me the stethoscope and urged me to listen to Sorin’s heartbeat: an unusual whooshing sound after every cycle presented itself to my untrained ear.
Sorrow hath no fiercer sound, not the weeping of mourners or the sighing of the grave.
“Nagsasara naman minsan kapag lumalaki ang bata, pero ‘pag malaki, kailangan operahan (Sometimes it closes up when the child grows older, but if it’s a big hole, an operation is needed).” With these parting words the doctor referred me to a pediatric cardiologist and recommended that Sorin undergo a 2D-echocardiogram to verify the findings. I nodded mechanically and thanked her for her time, carrying Sorin out of the office.
I went home, in the back of a taxicab, cradling Sorin in my arms, weeping quietly. Dusk was falling. Slouching in the backseat made my face less visible on the driver’s rear view mirror, and I struggled to control my emotions until I was able to get some privacy. Arriving home, alone with a sleeping baby, forcing myself to sublimate the fear and the worry in order to go through the motions of motherhood. Exhausting myself with tending to a newborn baby just so I’d have little time to dwell on the fact that my son had a congenital defect that might cost him his tender life.
Evading the inescapable truth can only go so far. If there’s anything else that drives me to be a nervous wreck, it’s the unknown. Chaos. Lack of structure. Muddling around major milestones without the flimsiest of plans, an iota of data. So I turned to one of the things that my generation derives comfort from: the fount of knowledge spouting from my laptop screen. I was no slouch when it came to scientific concepts, and with relentless googling, I amassed data on Sorin’s condition. Medical terms rolled off my tongue: patent ductus arteriosus, atrial septal defect, tetralogy of Fallot… Flash animations of the heart’s pumping action. Audio files of various sounds of heart murmurs associated with various defects.
The metal doors to the Heart Center were imposing, giving off this morbid morgue quality to the layman who associated heart disease with the gravest of deaths. It was freezing, too. I made sure that Sorin was bundled warmly in his receiving blanket, soft, fuzzy animal patterns in sky blue against his round pink cheeks. We were met by the pedia-cardio, an articulate woman with a buzz cut, and she questioned me about my son and my family’s medical history while she applied chilly jelly lube on Sorin’s chest. The baby didn’t take this kindly and began to bawl, a loud, aggressive cry that belied his condition.
We were advised to keep Sorin from crying and tiring himself out, not because of the nonexistent VSD, but due to the pulmonary valve stenosis that Dr. Kelly observed from the onscreen images. There was no way to go about it; it was severe, and would need intervention as soon as possible. A procedure called a balloon valvuloplasty was recommended. Thankfully it was less invasive and risky compared to open heart surgery: it involved inserting a balloon-tipped catheter through a groin incision, and inflating the balloon to widen the severely constricted valve. The baby’s healthy condition was a boon, however. It meant that he would recover well from the procedure. But we could not delay the operation for two, or three, or more, months, as the lesion’s severity might increase, resulting in a sick, weak baby.
A blur. More doctors to see, far-off hospitals to go to; frantically arranging for transportation, as we had no car. Family and friends to inform, and to implore to help. An expensive procedure to raise money for in an impossibly short span of time. A bouncing baby boy to stare at during nighttime, stroking his hair, throat constricted at the mere suggestion of his suffering, his mortality.
I struggle with my secular, pragmatic mentality: slightly wary of storming the heavens for a miracle, because in my worldview, it seemed unfair if a higher Power would choose to intervene in my case when somewhere out there, children were starving horribly in Africa, death and pain and loss being prevalent in this forsaken world. At night when I become weak from struggling with the reality, I pray for strength, to do what is humanly possible, and to trust in the goodness of man.
I have become wary of wishing for miracles when they have come in such short supply, lest I be disappointed.
Call to Action
I am nothing without a plan, but this time, my vaunted plan-making skills fail me. I’m writing this blog post as some last-ditch, desperate attempt to plead for help, though it hurts my pride at imagining myself as the self-sufficient, steady-as-a-rock parent. If in that aspect I fail, at the least this attempt at expressing my thoughts becomes a cathartic emotional distress enema. Those who have gone through the same fear and helplessness might find comfort in shared communion. One in pain, and hopefully, eventually, one in joy and recovery.
There’s a fucking Donate button at the rightmost blog column. They say every little bit helps. I say bigger chunks help a whole lot better.