Chapters ? – Heart Warriors Reshuffle
The first a chapter is from the original Heart Warriors (2012) but I am rewriting it with new information and events. I’m not sure where this chapter (which will stay but maybe be shorter) will end up in the sequence. The second chapter is a preview from the new version of the book and deals with post traumatic stress disorder. I’d say enjoy, but a trigger warning is probably more appropriate. You’ll see how my writing style changed over a decade, but I wrote the trauma as purely as it came, so it’s important to keep it authentic.
Greeley, Colorado, 1991-1994:
Jim and I met as crewmates at McDonalds. Under the heavy stench of McDonald’s back washroom, home to the trash compactor and the grease bucket, two teenagers fell in love. Our hands were gloved in salty cuts, our feet shod in cheap black shoes so grease-sodden that every third month the right sole cracked with a pop when we went up on our toes to reach for a Big Mac on top of the pass. We knew with that first pop the left sole would follow by the end of the shift, and we’d be out $12, two and half hours of wages, for our next pair of work shoes. On this greasy dance floor we were friends for a year, dated for two weeks, and began a life together that flowed quickly into three decades.
Almost two years after we moved in together, Jim and I married. It was early autumn 1994. I was twenty and he was twenty-one. We were oh-so-totally grown up and mature, buying each other cartoon character watches for our wedding gifts. I gave Jim Snoopy, and he gave me Sylvester the Cat. Our sugary white cake was a gift from a woman I babysat for in high school, just a few years earlier.
We hosted our reception in the same church basement/gym where I took P.E. and ate lunch for nine years of parochial school. The cavernous peach “reception hall” preserved the odors of generations of sweaty middle school boys and the adjacent musty basement. High above, near the graying acoustic ceiling, wasps circled their nests in the caged florescent light fixtures. The gym was $25; the wasps and the church wedding were free.
Our earliest years were full of retail jobs, aimless drives in the Rocky Mountains in the sunburned silver ‘81 Honda Civic, and little direction in daily life. But those nights of watching Saved by the Bell marathons and binging on Ben & Jerry’s Phish Food were our golden moments. Life was simple. Life was good. Reality wasn’t biting yet, but it was about to bite and bite hard.
Less than a year after he walked me down the aisle, my dad told his four kids he had terminal cancer. I was twenty-two when my dad died at forty-eight. Three years later, my best friend Mary died at twenty-five. I dealt with my grief in my mid-twenties by focusing on college and graduate school and constantly planning my future to avoid dwelling on my losses.
After Mary died, Jim and I naively believed the worst was behind us. With seven years of marriage to our credit, we decided we were ready to have kids. Unfortunately, my body wasn’t ready to cooperate. We started trying the summer of 2001, but it took more than a year of failed attempts before I was pregnant.
I couldn’t understand why it took so long, given my young age and my family’s history of high fertility. I was in the sweet spot of my childbearing years. As a college graduate and homeowner, I counted on a solid stash in my karmic bank account with dividends for personal responsibility. I was impatient and entitled, and then then I was thrilled to be delivered from frustration with a positive pregnancy test after only one month of charting my basal body temperature.
Awash in my big ideas of what the universe owed me, I celebrated all that was coming to me now that I was finally pregnant. I would use a midwife! Maybe a doula! Look at me! I was a textbook baby maker, now that the baby finally made its way to where it was supposed to be. I bought all the books, signed up on all the baby websites, and was ready to rock on with my mommy-to-be-self-righteous-satisfaction. Bad things only happened to women who did it wrong. Not me, I did everything right.
Those heavenly days of being pregnant for the first time! Everyone in my adult education class at Colorado State buzzed with sweet excitement, all for me. On our field trips to adult learning centers around the state, my classmates made sure I had water, food, access to the bathroom, etc. I relished being the spoiled darling of the day. I loved the attention; it was finally my turn. It was like falling in love. I was swept away with my first pregnancy. That first trimester was a true honeymoon period.
Then, ten weeks in, the midwife, Tina, couldn’t hear the baby’s heartbeat through Doppler or through my belly. To ease Jim’s and my worry, Tina did a trans-vaginal ultrasound. We saw our child for the first time. A tiny gray lima bean held in its center a bright flashing light. That was the heart, and it shined like a diamond on the monochrome screen in the dark ultrasound room. We nicknamed our tadpole Flipper, like the dolphin, and danced out of that appointment with the first photograph of our baby.
Everything was going great that fall until Jim’s cousin, Mandi, who was also pregnant but due in December, learned her baby had a birth defect. Mandi’s baby was diagnosed with omphalocele, meaning his intestines were not enclosed in his abdomen. Everyone else seemed so relaxed about it, even Mandi, but I was devastated.
Mandi had a plan at this great hospital in Denver with these great doctors whose names I didn’t bother to remember. The doctors would simply give Mandi a c-section a little early and fix her son. The baby would be fine. Everything would be fine because the doctors caught it early and could fix it. “Fix it, fix it, they could fix it and make it fine, fine, fine.” That was the refrain of the day – fix it, fine. It didn’t matter that it was broken because it could be fixed.
While the rest of our family seemed to graciously accept Mandi’s misfortune, focusing instead on the optimistic “they’ll fix it,” mantra, I was heartbroken for her. They could fix her baby maybe, but they couldn’t fix the theft of Mandi’s plans and expectations. I sympathetically imagined how awful it was to go all the way to Denver for c-section and to subject her first child, her newborn baby to immediate surgery. That wasn’t “just fine” to me.
Even as I pitied poor Mandi, I scheduled my Lamaze classes, daydreamed about waking Jim in the middle of an April night or maybe May. Flipper was due April 29. Would the birthstone be diamond or emerald?
I fantasized about our exciting drive to the hospital and debated whether or not I was tough enough to avoid an epidural. I was so warm and safe and smug in my cocoon of certainty that since this bad thing was happening to Mandi then nothing bad could possibly happen to me. The odds were in my favor.
I created a math-magical rule of numbers and proximity in my head that told me, as badly as I felt for Mandi, her random misfortune was my insurance. My deep well of sympathy was double indemnity.
December came, exchanging the daylight for holiday lights. I finished my last classes at CSU, took my final finals, and registered to complete my thesis before my baby came. I would graduate a few days after Flipper was due. I was on top of things and on top of the world. All my plans were coming together so nicely.
Life couldn’t have been better. Jim and I registered for baby gifts and neutral bedding with a cute jungle animal theme. We got countless baby mementos for Christmas. It was a swirling golden time of the greatest expectations.
On Dec. 26, Mandi delivered her son Trace as scheduled. He was taken into surgery a few hours later and, thank God, her baby really was fixed. On Dec. 27, I went to Presbyterian St. Luke’s (PSL) along with my mother-in-law Karen and my sister-in-law Jenny to see Mandi and her baby, who was making a solid recovery from his surgery.
When we arrived, being the most junior of only two non-blood relatives in the waiting room, I was repeatedly bumped by higher priority guests. The NICU had a two-visitors-at-one-time limit.
I was five months pregnant, not uncomfortable or unbearably sleepy, and everyone was interested in my baby-to-be as we waited en mass. I was entertained and entertaining and excitedly distracted by talking about my ultrasound planned for the following Monday.
Someone said that Mandi cried while waiting for her ultrasound. She just knew something was wrong. I was impressed by her psychic connection to her baby. My psychic lines must have crossed with another woman’s child, because everything told me I had absolutely nothing to worry about.
I waited, and waited, and waited, and eventually everyone saw Trace and Mandi but me. Just as my turn neared, the VIP great-grandparents blew in, and I was bumped again. I never did see Mandi or her baby that day, but in the several hours I waited, I became familiar with the 1990s blue and mauve tones and aqua accents in the NICU waiting area.
Still, even with the squishy couch, good company, and its “We believe in Miracles” tagline bobbing by on buttons pinned to lab coats, this was a foreign place to me. I wasn’t disappointed to get out of the hospital and have a late lunch. Pregnant ladies get hungry.
Because of my insurance plan and the fact that I was twenty-eight, the midwives didn’t want to give me a twenty-week ultrasound like the “What to Expect” ladies and all the preggo-mommy message boards insisted was par for the course.
The insurance company paid for that first one at ten weeks. It was a one-shot deal unless the doctor/midwife deems it “medically necessary,” and codes it accordingly. It’s a rule of numbers, not unlike the one I played to assuage any worry for Flipper since Mandi’s baby found the problems first. My midwives told me I didn’t need another ultrasound, and I believed them completely.
Nothing bad was going to happen to me or my Flipper, but I can’t stand surprises. I hate waiting for Christmas presents, I won’t tolerate suspense in movies, and I lose my mind when my playlists get set to shuffle. I cannot abide not knowing exactly what’s up, and you do not ever want to take a vacation or plan a party with me. It can’t be coincidence that there are five A’s in my name and my blood type is A+. Being a snoopy, controlling, flawed Pandora type, I had to know if Flipper was a girl or a boy.
During my pregnancy, I drove the five-minute commute home to eat lunch every single day so I could watch two episodes of A Baby Story on TLC. Like those people on the show, I paid lip service to the “we only want a healthy baby,” line. But Jim and I both wanted a girl.
Years before, when I ran the Montgomery Ward Children’s department, my favorite part of the job was displaying the frilly holiday dresses. I worried I might be disappointed if Flipper was a boy and I was forced to go with the tracksuits. I was unapologetically shallow. I didn’t know any better. Caught up in my moment of impending motherhood, I enjoyed the ride.
Still, I had to know whether Flipper was a boy or a girl. The suspense was killing me. On the midwives’ second “No,” I slyly mentioned Jim’s first-cousin-blood-relation was having a baby with omphalocele, and maybe they should do a check since that might be genetic, right?
Oh yes, I played the birth defect card from Mandi’s unfortunate hand so I could shop for my baby before it arrived. No, of course I am not proud of it. However, to my dying day I will be glad of it.
We were medically approved for one more full coverage ultrasound. Still, the midwife knew our ulterior motive and suggested we wait until week twenty-three when the baby was bigger.
December 30th was our big day. Our appointment was late morning, and we had lunch plans to celebrate our great discovery. Whatever sex Flipper was, our baby would be great! We brought nothing but optimism into this appointment.
I made a commitment after the appointment to return a narrow black proof book of family pictures we had taken in November. I was already a week late returning it, and the trip to the studio was an excuse to investigate the cute cafes and bookshops in the neighborhood. The afternoon was ours, and I filled it with expectations of adding pink items to my Target registry. I was planning and expecting, always planning and expecting.
I held my bladder for hours and grew excitedly uncomfortable waiting outside the ultrasound room reading the Working Mother edition with Rosie the Riveter on the cover. That issue listed my employer as one of the best companies for working moms because they gave new moms breast pumps. Mine was already at home in Flipper’s spacious closet.
Finally, the other couple came out of our room. My turn! The routine exam began with warm goop on my belly. It didn’t take long before our son made his maleness known. Overwhelmed by a wave of love, I saw that baby with his reptilian spine, his tiny skull and looming eye sockets, and his little baby-man-parts on the screen. I didn’t want a girl. I only wanted him, that baby, our baby, and so did Jim.
Flipper was suddenly and forevermore Liam, and any thought of girls disappeared as our glee washed over the room. We watched our son in his grainy alien world inside my own familiar body and brimmed with love, wonder, and not a few tears of joy. No doubts, no second thoughts, nothing existed in that moment but love for our little boy. Nothing ever felt so pure and true or so right in my entire life. It was a perfect moment, and I cherish it all the more for how brief and fleeting it was.
We were having a boy, and at the peak of my blissful ignorance it never occurred to me, other than my bursting bladder, that this exam was taking a long time. I’d never had a complete ultrasound before, so it didn’t seem strange that Karen, our ultrasound tech, kept making me shift around for the better part of an hour.
Finally, and mercifully, Karen sent me to the bathroom to see if Liam would move. The fact that she muttered “I just can’t get a good view of his heart,” more than once set off no alarms. I had no idea that was extraordinary in any way.
Karen should seek a second career as a professional gambler. With her poker face, she’d be a millionaire. We were beyond oblivious to what was coming. Pregnant ladies hear what they want to hear.
Jim and I rolled down the hall from ultrasound room to the midwives’ office with our fabulous fetus photos. We called both grandmas to gush about our boy. Liam! Liam! Liam! He, he, he! We were having a boy and everyone who crossed our effusive path was made aware of the gender of the child I carried. You’d have thought we were the first people to ever procreate.
Like a powder-blue freight train driven by a maniacal stork, we chugged in for our appointment as if it was no more than an inconvenient station stop on our way to our glorious destiny as Liam’s parents. We were cow-catching every person in our path with entirely too much information.
Once we checked in, a nurse weighed me, took my blood pressure, and tucked us into a corner exam room to bask in our joy. We waited for a midwife we’d never met before. We waited so long that shadows replaced the sunbeams. We observed the fading view on two sides of the building, made a couple more phone calls, giggled, waited, looked at our pictures of Liam, and waited some more.
We began to wonder if they’d forgotten about us or gotten busy with another patient. Maybe a woman went into labor during an office visit. We made sport of it because we were too happy to be annoyed. It never once occurred to me that anything was wrong – that anything could even possibly be wrong. We were so young with everything to look forward to. You are never more vulnerable than when you are distracted by utter joy.
Rachel finally crept in like a timid rabbit. Perched on the exam table with my back to the door, I didn’t see her enter the room. I looked over my shoulder and watched her slink slowly around the bed, sigh, and lower herself on to a round medical stool. Rolling up to me, she put her hands on my knees, then took my hands in hers and said, “I have some really bad news.” I’m not even sure she ever introduced herself.
I don’t think the pause between Rachel’s first words and her next was more than a few seconds, but time stopped.
I was in free fall with Midwife Rachel’s exclamation of “… really bad news.” I hit rock bottom with, “Your baby has Down Syndrome and a severe congenital heart defect. . . static . . . neuchal fold . . . static . . . Hypoplastic Left Heart Syndrome . . . don’t look it up on the Internet, it will only scare you . . . static . . . you should still go on your vacation this week . . . static . . . you might want an amniocentesis. . . . static . . . none of our doctors are available, they’re all gone on vacation.”
My ears filled with blood, they were engorged and ringing, like I’d fallen to the bottom of the ocean only to find there was no end to it. I felt like I was falling the entire time she spoke and was falling further still. I lost time and found myself struggling to walk out of the office with Jim. We both cried. Full of shame, we retreated downstairs after our previous display of “it’s a boy” shenanigans. We were like vaudevillians realizing they crashed a wake. Everything we had been was now wholly inappropriate. We stumbled out the door to find the air outside, but we still couldn’t breathe.
In the parking lot the day that literally and figuratively started out so sunny had grown overcast. Most of the afternoon slipped away while we were in the corner room, and it was dead winter. I grabbed a naked young tree in the cold air and sobbed uncontrollably. I’d gone rubber-boned as I absorbed the chilling vinegar of Rachel’s pronouncement.
Tears streamed down Jim’s face as he caressed my back. An elderly couple walked by us, their faces awash with pity. Their expressions made me sick to my stomach, and the heat came back to my ears. The rest of my body felt frozen as we retreated to the car.
The narrow black proof book was still in my seat where I left it, like a bookmark for my life. The life I left in the blue Saturn was on a different planet from the one we now inhabited. Jim wanted to go home. I refused. I absolutely could not go home. Going home made this real. I willed myself to return the proof book to the photographer. I had promised, and it was already late.
Jim said they would understand, but I had to take it back. I didn’t think they would understand. I didn’t understand. I offer no explanation for that compulsion. Though she was only the messenger, Rachel stole my life away from me, and I was determined to finish this one damned thing that I’d set out to do that day. It was now too late for lunch, and we couldn’t comprehend food. We would not shop for baby clothes. Everything else was shit, so I had to return that book. It was the only to-do item that survived our old life. It was all I could do.
We drove through town to the highway. I called our moms and retracted all of our good news through sobs. . . on voicemail. I imagined them both off telling their work friends about the new grandson, how excited we were, and how we kept saying we wanted a girl, but they’re so happy now. After all those years together and wanting a baby, “Jim and Amanda are so happy now.”
Only now we weren’t happy at all. Not a drop of happiness remained in my body. It was as if I was brimming with the purest joy a heart could know when a nuclear explosion detonated, incinerating every drop of my pleasure in my flesh with a flash. All that remained was an ash shadow of that glowing happiness from a couple of hours before. It took all my energy to not blow away.
I was unintentionally cruel that day, making Jim drive me thirty miles and back to return a stupid proof book and telling two grandmothers to expect a broken grandchild on voice mail. I still see them, our own mothers, returning to their desks, checking their messages expecting congratulations but hearing me sobbing and incoherent, stealing back all their joy.
I was the instrument of aftershock lying helpless in the rubble of my own life. I’ve never found the strength to ask anyone else about that day, to apologize for my insensitivity. It never occurred to me that there was collateral damage as I carried the time bomb in my own body.
When we hit the cloverleaf to exit I25, I wailed like a banshee, “I don’t want a retarded baby!” and instantly felt guilty and evil for saying it. This poor baby that I wanted so badly only hours before and years before that did nothing wrong. Liam didn’t change anything, but everything was changed forever.
For years whenever I found myself cresting the incline of that exit, I was seared again with guilt for rejecting my child in that one wicked moment. I’m still trying to take it back. My empathy lapsed for our mothers, but I never stopped thinking of our child.
We parked a few doors down from the photography studio, and Jim waited in the car. I’d pushed him to the limit. Jim took me this far, but now he was fixed to his seat. Maybe he called his mom, I don’t remember. I was a negligent wife and a wild animal in pain. I was desperate to get that proof book out of my life, as if returning it would set everything right, like I could return this totem and reset time. It was insane. I was insane.
In defeat, I walked through a hallway lined with gorgeous pictures of pregnant bellies caressed by paternal hands, naked newborns on their fathers’ hairy forearms, smiling infants, and gleeful toddlers. When I finally made it to the counter, I was in tears again. No one was there, so I shoved the book on the desk behind the counter hoping they would find it.
Just a month earlier, I studied those baby pictures, relishing the time when I would bring my own baby back in the spring to create our own photos to hang in our own house. I relished how after being so good, doing everything right, and dodging the cold threat of infertility, it was finally my turn. I had the goldenrod price sheet at home, a souvenir from when I thought I could plan my own life and set expectations. That time was now over.
I hastily retreated down the hall of shame and held my hands to my face like blinders to block those photos from my periphery. I quickened my step. They were like evil faces staring through a window in a horror movie. All those perfect babies sneering at me and my broken boy, “You’ll never be like us. This isn’t yours anymore.” The truth is it never really was.
I folded my rubber self into our car, instantly exhausted. I had been running on adrenaline and was now flooded by sorrow.
The December sky grew dark as we drove home. Jim took the dogs out at the same time the phone started to ring. I suppose it rang all afternoon, driving our dogs to distraction. But I made us take our time getting home. I wanted to stop time. I thought maybe I could stop it, rewind it, control it, wish things back to how they were supposed to be. I was thrashing at time, and time was laughing at me.
Everyone knew, everyone called, my mom called twice. The first time I re-explained what I didn’t know or understand.
My mother said, “I’m so glad you didn’t find out until after Christmas, you were both so happy at Christmas. I’m glad you had that.”
I folded like Gumby, sliding down the door to the floor, and whispered hoarsely, “I don’t think I’ll ever be happy again.” I squeezed my eyes as more tears erupted and choked out the words, “I have to go.”
Against Rachel’s advice, we hit the Internet and learned about Hypoplastic Left Heart Syndrome (HLHS). It scared the shit out of us, and for the first time I learned there are things far worse than Down Syndrome. It made me hope for Corky from that TV show Life Goes On instead of the tiny white coffin trapped in my head tearing apart my soul.
My mom called again. She wanted to come over; she kept asking if I wanted her to come over. I didn’t take the hint. I didn’t want her to come. I didn’t want anyone to come. I could not bear a house full of mourners. Who was dead? Our two parental bodies were still breathing, all three broken hearts were still beating, but something was clearly dead.
The day we learned of Liam’s massively defective heart and impending mental limitations, I said, “Fuck it,” and took a warm bath. I hadn’t taken a bath in over a year. I stopped soaking in favor of showers when I read that warm baths make it harder to get pregnant. I didn’t take baths after I was pregnant because soaking in hot water wasn’t good for the fetus’s heart—seriously, the heart.
I didn’t drink diet soda, alcohol, caffeine, etc. I ate well, slept well when I could, and generally followed the “What to Expect” book like a Bible for the cult of the pregnant. I did everything right. I only gained the bare minimum weight, and I was careful to get the right nutrition. I took vitamins for as long as I refused myself a bath, and it did me absolutely no good, so I ran a bath.
I forgot myself for a few minutes in the warm water and thought, “I should shave my legs,” but my razor was nowhere to be found. Jim took it while the tub was filling. When I asked him why, he looked at me so sadly and said, “I was afraid you might do something.”
Jim was afraid because he knew that when I was fourteen, I’d been on the edge of suicide, and if anything could drive me back there, wouldn’t this be it? But I laughed out loud, because as horrible as this day was, and it was truly the worst day of my life, I felt no desire to end my existence, much less by disassembling a Daisy razor.
In that one moment of inappropriate laughter, I realized that as dark as things were and as scared as I was, I had survived a worse mental state as a teen and emerged stronger. I was trapped in a private hell at fourteen because I couldn’t see any way out but death. As a child, I was lost. Now I was twice that girl’s age, and I was going to me a mother. Yes, I was terrified for my son, but I was not afraid of myself and I didn’t want Jim to be afraid for me either.
This night, fourteen years later and a lifetime stronger, fearing for my baby’s life, I couldn’t see the way forward, but I knew in that instant, as surely as I knew I would never kill myself, that there was a way. I would do whatever was necessary to save my baby. No matter what Liam was like I would love him unconditionally. I already did but it took my brain a few hours to catch up with my heart.
I willed myself to survive this conflagration. I might not know the exit in all the smoke, but I was going to find the way for Liam, for Jim, and for myself.
The Most Tender Spot
“Anybody who has survived his childhood has enough material to write for the rest of his life,” this quote, with some variations, is attributed to Flannery O’Connor. Without beginning a second book or dwelling on it, I’ve spent years trying to unlearn the most preternatural lesson I was taught as a child by my family, my church, and my school.
I learned early and deeply that vulnerability was a weakness. To survive my childhood, I could not be vulnerable. I learned self control over my tears before I learned the alphabet. I learned to keep my feelings to myself, all my feelings, lest I be accused of being weak, wimpy, whiny, chicken or worse, open myself to ridicule for liking the wrong things. It was better to like nothing than to express liking something that could then be turned against me for merciless teasing. It was better to like no nothing than to be vulnerable to attack. This is not to disparage my family, there was seriously at least one book’s worth of generational trauma that baked that sourdough life.
Regardless of the root of it, I grew up to be an invulnerable adult, which made me strong, stoic, and well-prepared to weather traumas including Liam’s health crises. Nothing comes without a cost, however, and the price of my invulnerability was that I lacked the self-love and compassion required to heal from the many traumas in my life, some of them so deep and numbing, that as I edge closer to fifty years of age, I’m still discovering them.
The day of Liam’s initial diagnosis was both the very best and very worst day of my life. Most people cannot say that they have had their highest high and lowest low in the same building just minutes apart, but because of the company I’ve kept I know more than a few. The pure and absolute joy and excitement I felt bubbling through my body, knowing I was having this baby I so wanted, sharing this beautiful moment with Jim, it was my greatest dream come true. I was fearless, my soul was dancing, and I was entirely out of my well-guarded element. In love with Jim and our son, our future, our family, it was the single best feeling I’d felt in all of my twenty-eight years. I was unapologetically happy. I was shamelessly joyful. I was infinitely vulnerable.
I finally lit the tiny pilot light on the future I always wanted. It glowed, illuminating my heart, and it when I least expected it, it was extinguished, and I was left to choke on the gas. To be the happiest I ever was a single moment before immersion in utter misery was like posing on the edge of a cliff for a photo, only to fall over the edge and never find bottom, cursing myself the whole way down standing too close to the edge and tempting fate.
Of course, I know now, after so much therapy and all the Brene Brown I can get, that vulnerability is a strength, not a weakness. But I’d been raised to believe it was, and that horrifying experience in 2002 taught me not to question the belief, and it would take years to dare challenge that world view.
My pre-COVID therapist, Kris, asked me if I had found out days or weeks later, would it have hurt so bad. I don’t know. I don’t know if it would have hurt worse to be able to enjoy the happiness longer, to get used to it, to explore it and expect more of it. Maybe it would have hurt less, to not have it taken away so soon after I first glimpsed it. I will never know. Jack Kornfield has this quote I love, “The definition of insanity is hoping for a better past.” I can’t change my past, I can only change myself in the present.
Ultimately, what matters is that it was so brief, and then it was utterly gone. I felt joy so deeply and so fully throughout my entire body, but with one conversation I felt nothing but numb. The grinding of emotional gears gave the numbness absolute power over me for years to come because it was so extraordinary a trauma and only the beginning.
The numbness won, and I vowed to never again allow myself the weakness vulnerability to never again tempt fate. For more than a decade after seeing that loving spark, I lived in a hypervigilant but numb darkness. It was the single most devastating experience of my life because it happened when I wasn’t looking. From the death of my dreams and expectations came the birth of my exhausting hyper-vigilance.
Kris and I worked through December 30, 2019 in therapy. I managed to be in session on the 30th. The huge revelation for me was not the anniversary effect, I was well familiar with that after several years. Rather, understanding why the diagnosis and the remainder of my pregnancy were the most difficult traumas of my adult life was enlightening. I’d made the fundamental mistake of being vulnerable, and I got exactly what I grew up believing vulnerable people deserve: suffering.
While the April 12th moment when Liam almost died, is absolutely one of the more traumatic experiences of my existence, it wasn’t as deeply shocking as the diagnosis. The events were traumatic by their proximity to death and by the violence of his salvation. Yet, we were already in the hospital in the Cardiac ICU even, and Liam had not been himself. Something in my gut was telling me things weren’t right. It was a shock that he was so close to death, but not the same shock as learning my baby was going to be born with half a heart. That was the first great shock at the worst possible time – when I least expected bad news, when I wasn’t steeling myself. I swore I would not be knocked off balance again. These oaths I took so seriously I almost killed myself to keep them.
Yes, I’ve been happy since then. I was happy when Liam was born. I was happy, but I was no fool. I knew things were in a bad place. When Moira was born, I was happy and cried joyful tears; but any innocence I’d harbored about childbirth and happy endings had long since withered in the final days of 2002. Even before Moira was born, she went through multiple diagnostic tests to ensure her heart was healthy.
Never was I so vulnerable, so open like a flower in full bloom, like a dog with its belly exposed, content, unafraid, or unsuspecting. I was at ease in the world. In the entirety of my life, I was never more alive than I was in the moments before I learned about Liam’s diagnosis, and after it was known, I merely survived one moment at a time.
I see that now. I see that the joy made the pain so much deeper and more searing. It was more than a knife to the heart; it was a flaming sword that ignited my combustible pleasure. The truth cut and scarred me deeply. I also see how, even until a few months ago, that I was much too hard on myself for being vulnerable. I judged myself so harshly. Early readers of the unpublished book urged me to be kinder to myself, and I tried. Whenever I lightened up on myself, I wasn’t doing it out of love for myself, but to please my readers who were kinder to me than I was capable of being to myself.
I was hard on myself because I didn’t understand and couldn’t believe that after everything I’d endured as a suicidal, sexually, spiritually, emotionally, and physically abused child, as a young woman who’d lost her father and her best friend before I was twenty-six, I still had every right to be happy. I didn’t include myself with all other humans, or believe I had a right to be vulnerable. My vulnerability that made me so exposed and intensified the trauma, was also what made me normal, human, and authentic. I deserved to be happy. I deserved to have my vulnerable moment, and I did not deserve to have it shattered and stolen. It wasn’t what I deserved, but it is exactly what happened, and it’s taken me seventeen years to pick out all the shards and try to make some sense of it while wearing the gloves of self-compassion.
Understanding that it was natural to feel broken and burned at such a time has allowed me to finally find the love of self I deserve, without the confused judgement that perpetuated my trauma and kept me trapped in a spiral of judgement that gripped my pain like a snake grips its prey. It was my own judgement that held a stranglehold the pain inside my body. This truth has been one of the most healing moments for me on a long journey toward wellness because it means that I can finally release my self-blame and my grip on the pain. Dealing with the full truth of what I felt physically both before and after the diagnosis, finally allowed me to escape that moment and become present and whole in the here and now. Connecting with that first and last moment when I felt truly alive has allowed me to begin to live again.