originally written January 14, 2013
My grandma lost the baby in the bathroom, or so the story goes. It was one of many—gone before the advent of modern medicine & prenatal folic acid. She said the spine was open, all deformed-like—at least that is what my young mind chooses to remember of her stories about “the olden days”. She grieved those babies, I think. I heard about them only after she died, my mom talking in fond distance about the ever-present pain she could sense when the anniversary of loss rolled around once again.
I think of it as the scene in The Help—sweet Cecilia Foote burying those tiny miracles-gone-awry under the rose bushes in her backyard. Except my grandma’s experience probably didn’t involve rose bushes. Or red high heels.
What it did involve, I would presume, is the anxious anticipation that fills all of us when new life is on the horizon. Modern medicine, in all its wisdom, gives us choices now. Something like ordering up a favorite drink at Starbucks, we can now choose a donor & a gender & name for the record books. We can choose pink or blue or yellow or gray—or some smattering rainbow of them all. And most of the time, if we are lucky we can choose the birthdate. So. Many. Choices. Among them, the choice of DNA sampling—a trend quickly becoming the genetics version of something you’d order up at a tapas bar, customizing the profile to exclude Down Syndrome & Cystic Fibrosis, Huntington’s or BRCA mutations and I’ll take my green eyes on the side, please.
It seems that in an odd way, modern culture tells us that this menu of specialized tests will tell us what life will be like with our newborn if they have something that this modern medicinal miracle can catch. And for some parents, myself not entirely excluded, a preview of the dessert before the dinner starts can lead to a heart that soars with relief when the tests come back negative.
We seem oddly shocked, then, when the tests are wrong.
As parents, we seem to grasp onto the results, for reasons that I’m not even sure I could list here. The satisfaction of knowing the answers & the status & the FUTURE. Because let’s call it what it is: we want to know, to the greatest extent of our ability, what life with that baby & this child & that boy & this girl is going to be like in vivo—on the other side of the womb.
I’m taking care of a 14-month-old munchkin. She’s been in the hospital for a little over two weeks. Some might say she is sick, nay sayers just unlucky. And while I’d like to think that luck has nothing to do with it, she’s one that follows me home & begs more questions than answers. You see, this long-eyelashed, round bellied, brown-eyed baby is brain dead.
This modern culture, the one that seems to serve us babies made to order makes us believe that if we can just see that negative result, that not found, that 40-week-due-date, safe delivery, first breath, first poop & pee & sleep, those first six months…everything will be fine. Sometimes I think back to February & try to relive the feelings I had when we walked into the hospital a couple & walked out of the hospital a family. And aside from the exhaustion & blub & soreness & overwhelming emotion, part of me felt invincible.
Modern culture told me that I had gotten pregnant. I had carried this baby to term. I had delivered a healthy kid with a successful first breath & poop & pee & sleep. Irrepressible success.
Invincible because we had succeeded.
The truth, though, is that life is yet to be lived. Accidents are yet to happen. Diagnoses are yet to be made. Love is yet to break our hearts. Babies don’t pop out with a crystal ball--& despite what we’d like to believe, modern medicine doesn’t create them either.
I guess this is where I struggle the most—I like to think of myself as an optimist in medicine. Over the past two years, I’ve convinced myself that despite what the evidencegrade says, anecdotal experience trumps. Which is why I’ve been recommending gluten-free diets to my patients with IBD, encouraging mild diabeticsthat their disease is, actuallyreversible, & holding the hands of parents who freak out that their strong & healthy 14-month-old will not actually walk—she will—on her own terms, in her own time.
Evidence, anecdotal or otherwise, doesn’t own stock in the future, either.
Which is why this brain dead beauty rocked me. And the early death of a mother-of-six from a heart attack. And the traumatic accident that took the IQ of the school teacher. And the infestation of cancer in the 20-something’s cells. And the scleroderma that is taking her twenties hostage.
Last week, I reached a turning point. It wasn’t hopeless. Or desperate. It wasn’t tearful or emotion-filled or overly dramatic. I walked in the door & hung up my coat just as I’ve done for two years. And I kissed my husband & hugged my kid & stacked the mail in the exact same manner as before. But my come-to-Jesus left me solemn, broken, & oddly… restored. You see, the responsibility had been weighing too heavily. To learn. To know. To keep up. To read. To answer. To predict.
I realized that for the past two years, I’ve been trying to preview the dessert—trying to hang on to the last glimpse of predictable hope of health. And with full certainty, I finally know that I actually don’t know. I don’t know the future. I don’t know that if you take a baby Aspirin every day after age 50 that you’ll be spared from a heart attack. I don’t know that if you take prenatal folic acid, your baby won’t be born in the bathroom with spina bifida. And I don’t know that if you live, if you grow beyond your sixth month or your sixteenth year that tragedy will not knock on your door & steal your livelihood. And I most certainly don’t know your future, despite the medications that I prescribe to try & make it better.
As a culture, we put too much hope in the tangible. The pill bottles. The prognosis. Even, the prevention.
Do not put your trust in princes,
in human beings, who cannot save.
When their spirit departs, they return to the ground;
on that very day their plans come to nothing.
Blessed are those whose help is the God of Jacob,
whose hope is in the Lord their God