Amid all of the Facebook 10th anniversary slideshows,
we’re all getting eyefuls of what the social media channel believes to be the
most important – via the most-liked – photos we have posted since you, me and
all of my Facebook friends, denote as representative of or online presence on
this platform. Essentially, it’s a
membership CV, and just another way to get in touch with people you either know
or don’t know.
So, last night in a post snowstorm and Polar Vortex cabin
fever, I picked up a friend to get to a movie.
She mentions the above Facebook slideshow ordeal, as I will now call it,
and says, “You know, (her husband henceforth called JOHN), John said - don’t
take this the wrong way - but you know all of the stuff on Facebook? I have to say, and I have to agree with him,
that you don’t post anything about Luke.”
Luke is my son, the oldest among my three children. He’s was the breach baby in-utero, the child
born with a bilateral inguinal hernia that our crappy pediatrician did not
detect until he was five weeks old, and was repaired via outpatient surgery
after probably enduring the pain of it since birth.
Said pediatrician blamed the new parents, by the way.
Luke is the nine-month old baby sent to a routine pediatric
cardiologist exam when the doctor on duty at the pediatric practice (not the
crappy doctor, but one of the only good pediatricians at the office, I would
discover) detected a heart murmur. The
nine-month old baby that I sat feeding when I told my husband that our son needed
heart surgery to correct a coarctation of the aorta. The husband who laughed at the idea that the
baby’s heart needed to be repaired, because he could not emotionally deal with
it. That the pulses in his son’s extremities
were too low for this boy to be the perfection we thought him to be. That the blood was squeezed off, and though
it pushed hard through his heart, there was a kink in the hose, essentially,
that would have to be cut out. That Baby
– tiny little human entrusted to she-who-knows-nothing, would have to wait
until he was older, even though I was pregnant with my daughter at the time.
Luke is my eldest son, the one who got through this heart
surgery at Columbia Presbyterian Hospital, supposedly the best in the country,
but who’s chest tube (that tube meant to drain the leaking fluids post surgery
– the fluids that are supposed to stop leaking, but didn’t, because the student
at this teaching facility under surgeon Ralph Macca, fucked up and ligated a
thoracic duct that could drown my seventeen-month old baby, if they didn’t
replace the tube that kept getting stopped up with the debris from his insides)
would not stop draining. He’s the one
who I learned to fight for regardless of the highbrow yet profoundly stupid
hospital staff who didn’t know that the chest tube overflowed into his bed
because it was clogged.
He’s the tiny little boy that I never though I would be
entitled to mother, who I stood by, very seven months pregnant, for more days
than any of us thought would be required of this. And, the one I fought for when not one person
in that hospital seemed to give a shit about something I knew was wrong, but no
one would tell just tell me that it was.
Perhaps they thought I was fragile.
That the fact that the chest tube was getting clogged, that
it would have to be replaced while my seventeen-month old baby was held down by
five people, awake, because it was too soon for him to be safely anesthetized,
who I heard scream and cry, while his dad worried that I would pass out – his
dad, who made me angry because I realized then that he did not know me very
well.
“Some parents just can’t stay,” a nurse told me. Some parents wouldn’t be able to take seeing
their kids like that. This, I was told
by one nurse who held back her tears.
Luke was one of the only complications in an otherwise
fairly straightforward surgery to remove a kink in a hose.
Yet, in order to correct this complication, to fuse the
broken and leaking duct, Luke would have to drink fatty milk – Half-n-Half – so
that when the surgeon went in to patch the ends back together, he could better
seen the fluid that would turn milky white because of the milk, and quickly
identify the culprit, leaking duct. This
fact of eating before anesthesia (potentially, lethal) infuriated the
anesthesiologist, who then had to find a good vein while Luke was awake and
screaming instead of gassed asleep. Antesthesiologist
poked and prodded amid my son’s screaming and crying.
They fixed it, the duct.
Two surgeries later. A lot of
morphine and whatever else they gave him.
We got him home to blueberry pancakes and the flapping he had already
started just before the procedures. Two
months prior to such surgery, he had started talking and walking – at fifteen
months to be exact – on the inside of late.
After that surgery that left a wide scar under his left arm
and another scar from the hole the shitty surgeon dug through (it looks like a
bullet-hole scar), Luke needed two more surgical procedures, one to insert
tubes into his ears and take down his adenoids.
He woke screaming most nights to sleep apnea. Then there was another to reinsert the tubes
in his ears. His repetitive ear
infections compromised his hearing, which compromised his speech. This speech thing we discovered at age three
when his pre-school teacher noted his delays and crying fits, recommending that
we have him evaluated, and that started into the discovery portion of who Luke
is and what is part of him now.
My baby boy Leo was just born when the evaluation period
began. He was approximately three months
old. So, if you’re counting,t hat would
make three kids.
Achoo! And,
look. Pregnant again.
Yes, I wanted and planned for all of them.
My dad died while I was pregnant with Leo, just before the
Luke evaluations. The road was rough and
I felt pretty much alone along the way, planning by instinct and super-mother
strength, what to do next, thinking that I could somehow fix all these things
with him. Life teaching me that I could very
much not do that. All I can do is love
him and do my best to help him also love him.
Most of the time, I feel like I completely suck at this
job. I don’t enter that world
correctly. I don’t understand its walls.
Yet, my marriage suffered despite it. My family is still at arms-length, judging my
hyper-reactiveness, then my disengagement, then my everything, then my
super-heroine-uber-molecular-hyper-focus to get the help I and they need. Like any one else in the world knows what’s
best for me and my son. Nope.
Luke’s father prohibited me writing about it though he knows
that I’m a writer and this is one way I cope and synthesize information into a
proper emotional response. It’s like the
parts you can’t see of a chair that hold it together.
Paul said that it would only hurt Luke for me to make a big
deal about it. Then there are the
reactions too, that I would be somehow whining or exploiting Luke’s
difficulties, for my own gain.
If you know me. I’m
not a whiner. Even when it’s cold and I
hate it, I try not to.
So, here’s what I say to social media in terms of
representative photographic equality:
algorithms are not human. Not
even close. An algorithm will never be
able to read the human emotion that holds close my priorities and the depth of
love that scares me because it can be just that fierce that I can scare myself.
And, no algorithm will tell you how much I love my son.
He is the first person to show me, Little Miss
Perfectionist, that trying is worth everything.
No comments:
Post a Comment