I’ve taken a wee hiatus from the blog thing this week in order to get our family’s Back-to-School legs under us.  Much like motion sickness, we all cycled through our own versions of green under the gills and wobbly knees.

I also carved out some time to read some other blogs.   A Pandora’s Box of an experience, authenticity splatter paints site after site with open process and genuine welcome.  There’s a sacred chord common among them too.   The minor falls aren’t always that minor, but openly and honestly explain.  In many cases, I felt as if the blogger was talking directly to me, like we were sharing a bottle of Shiraz, and she really wanted me to understand.   The major lifts mold hope like clay on the wheel.   I read about what broke the hallelujahs of others, and was stirred by the movement of those fierce hearts.  They write to understand; they write to keep breathing; they write to help us all make sense of life’s density and experience.

Aunt Becky has such a site.  She wasn’t always Aunt Becky, but she will tell you about that when you visit her there.  When you go, carry my admiration and my prayers with you like fireflies  sparkle the night, with gentle whispers to lift her and to craft her Princess of the Bells a new tiara of light.

Reading about Aunt Becky’s journey brings The Oldest Girl to mind.  I now wear a new coat. The Oldest Girl’s illness changed my identity. The story went something like this:

I’m naked and I’m cold.  My infant daughter’s emergency heart surgery and subsequent hospital admission has stripped me of my maternal coat.  You know the one.  That warm, cozy fleece with all the comforts of flannel designed by Denial.  The one I curled up with at night to keep me safe so I could sleep secure in the belief that my family was protected.  The one I held open to catch my two-year-old son’s running giggle dives.  The arms cocooned my pink and wrinkled newborn daughter.  Its deep pockets held Kleenex, Goldfish, and Pokemon Band-Aids, all the medicine I thought I’d ever need to heal hurts.  The hood shielded me from the evening news like a solemn promise that mine would never be the statistical anomaly whose strange lump turned out to be cancer or who walked in the wrong McDonalds at the wrong time, and fell victim to unspeakable violence.  I miss that coat more than the cigarettes, caffeine, vodka, Pop-Tarts, profanity, bad men and other vices women give up to become mothers.  It’s cold out here.  My world feels bigger and more scary now.  I no longer enjoy the luxury of the Denial label.  The Oldest Girl is the one who almost died and, I will never be the same.  My daughter is the one in 12,000 born with a congenital heart defect.

The term heart defect has only two words.  The first, an adjective, conjures the undeniably positive connotations of love carved into the side of a proud oak, a child’s sloppily pasted Valentine’s Day card, Mother Theresa-like character and the center of debate.  It’s the noun that fires the phrase with sinister associations of betrayal, pyromania, Adolph Hitler and dysfunction.  The two words together describe a disease I never thought would be used to characterize my daughter’s cardiac condition.  I knew The Oldest Girl breathed differently than other babies. She snored, hummed and whistled from birth.  My family joked that she snored like an old man after a long poker game and too many cigars.  I teased too, as we had the pediatrician’s assurance that periodic breathing was normal in infants, and that some babies simply breathe more loudly than others.  We all slowly became accustomed to her respiratory percussion, and I repressed my SIDS fears like a movie trailer, a scary feature I would not pay money to keep me up nights.  On the Monday of her one-month well-baby visit, however, neither her pediatrician nor I liked the way she sounded.  Three days later, we were in the Emergency Room of the University teaching hospital.

The Husband and I walked our five-week-old daughter into the trauma center with unspoken confidence even though we were at parental DEFCON-4.  Though neither of us said so to the other, each of us held the same conviction.  This trip was merely a scary formality to confirm The Oldest Girl was completely fine.  We knew it was a good hospital.  The banner that touted, “Voted A Top-100 Hospital,” on their pedestrian walk-way proudly confirmed our conviction.  The Husband, a firm believer in the religion of modern technology, held my hand as I snuggled The Oldest Girl close to my chest.  The triage process was simply tedious, not painful.  The staff we interacted with seemed as interested in our insurance information as they did our daughter’s condition.  Nothing in their manner suggested The Oldest Girl’s condition was critical.  The physician who initially examined her seconded our pediatrician’s tentative diagnosis of tracheal malacia.  This doctor explained that the strider, or noisy breathing, The Oldest Girl experienced might be caused by an under developed trachea that was more soft or “floppy” than its cartilage should be.  We were assured that if this was the case, it was a grow-out, developmental condition. She ordered a chest x-ray and explained that The Oldest Girl would be placed on a monitor and admitted for the night for observation and further evaluation the next day.  We accompanied Oldest Girl to radiology with a sense of relief.  Experts and the best equipment possible were put in place to help us monitor her breathing.  If the worst happened, if she in fact stopped breathing, help would be immediate.  Even the doctor’s report that the x-ray showed that she had an enlarged heart, and that a pediatric cardiologist would consult on her case did not daunt our blithe expectation that we would be going home the next day.

The cardiologist who entered our room the next morning seemed to share this expectation.  As he wheeled in the machine to administer The Oldest Girl’s echocardiogram, he promised that we could rule out that she had any cardiac issues in ten minutes.  Forty anxious minutes later, during which I futilely sang to comfort my daughter in an attempt to quiet her screaming discomfort and outraged frustration, the cardiologist said he had to call in one of his colleagues to consult on The Oldest Girl’s case.  I’ve seen too many reruns of ER and Chicago Hope to miss the implications.  It was then that I began to split like an ameba during cell division.  I was in the middle of at least two experiences.  First and foremost, there was the numbing reality of Oldest Girl’s condition.  Secondly, there was the distracting interface of being immersed into a hospital culture with which I had little knowledge.

This sense of doubling only increased when the consult entered the room.  The next three hours were a blur of my attempts to console Oldest Girl while the pediatric cardiology team assessed her condition.  At no one time was there fewer than three doctors in the room. All the while, Oldest Girl screamed and screamed and screamed.  She was tired and anxious, in a strange environment, and did not want to lie on her back, her least favorite position, one more minute dammit to hell.   All the while, the doctors surrounded the monitor and spoke their code to each other, “I can’t see.”

“I can’t get it,”

“If she would just,”

“There it is,”

“Coarch?”

“Did you feel femoral pulses?”

“Her color isn’t good, she’s grayish.”

“Look.”

“See?”

“What if her duct just closed yesterday?”

Meanwhile, I serenaded Oldest Girl, I climbed into the crib and curled her into my side, I breast fed her, I held her in almost every conceivable position, including one that was almost upside down and I attempted to sooth her with my mama words and voice. We were told that her response to the test was not a good match with the team needs.  In order to get a good reading, Oldest Girl had to be calm and relatively still.  Frustration began to wear on everyone in the room, an occupancy that grew to an alarming six-doctor level at one count.

The sheer volume of white coats in the room heightened my anxiety as much as the test itself. The simultaneity of demands for my attention danced in kaleidoscope neon.  I was dizzy with their patterns:  The Oldest Girl’s needs, my own foreboding fear, and the mysterious medical vernacular that decoded her prognosis.  I was as saturated as a diaper in a kiddy wading pool, but these waters were deep and the undertow menaced.  It was a startling moment of maternal epiphany.  As inadequate as I felt, as viscerally engaged as I was in my experience of The Oldest Girl’s illness, I was the only mother in the room and Oldest Girl needed me.  This infused me with a sense of purpose.  I had a title and a job description.  I was The Mamma.

And even though
It all went wrong
I’ll stand before the Lord of Song
With nothing on my tongue but Hallelujah!