Persona non Facebook

Pixelated Baby 2

I’m not posting anything to Facebook these days.  No witty remarks.  No selfies.  No listicles, quizzes, or videos of animals doing dumb things (or police officers doing dumb things for that matter).  The reason for this is that my wife and I recently had a baby and we therefore have absolutely nothing to say on Facebook.

But, but, but…  I’ve achieved the Facebook equivalent of the Holy Grail, right?  A baby!  A BABY!!!!  And not just any baby.  My baby is objectively the most beautiful, talented, alert, advanced, brilliant, funny, cute, intelligent, adorable, sweet baby that has ever, EVER, existed.  Yes, other babies are cute too, but my baby… well, all I have to do is post her every waking moment (and sleeping too) and the “Like” floodgates will open in recognition of her beauty, talent, alertness, brilliance…

So why abstain?

Like any proud parent in the age of the black mirror, my wife and I gorge on imagery of our daughter, sharing photos of wide-eyed smiles, unbearably cute feet, and the occasional poopy diaper.  We send each other text messages across the bed, simply to share every angle and point of view of our beautiful daughter.  We simply cannot get enough of her.  Yes, we have become that special brand of parent who stares at their child while simultaneously looking at photos of their child.  Judge us all you want.

The thought of posting images of my child to Facebook, however, fills me with dread.  I’ve seen the torrent of baby pictures out there and can’t shake the feeling that danger is lurking somewhere around the edges of my phone’s screen.  Photography may not be stealing my child’s soul, but is posting my child’s image to Facebook doing something similar?  Ok, maybe that’s a bit extreme but I can’t help it.

From the moment I found out my wife was pregnant a very particular brand of protectiveness has taken root in me, no doubt an evolutionary trait that makes every parent (of any species) care for its young.  When our daughter was born, that animalistic instinct ballooned to unreasonable proportions, transforming me into a prowling, overly-protective hyena with hackles raised.  The prying eyes and fingers of strangers are an abhorrent thing to me. I cringe every time a stranger peers into her stroller, and want to strike anyone who dares to touch my daughter’s foot or head or hand.  I might as well tattoo “Stay the F#@K away!” across my forehead.

You might argue that Facebook is precisely the right place for me, keeping me at a safe distance from the looky-loos while still being able to boast, celebrate, and beam my sense of pride to the masses.  After all, having a baby is a public event.

This is where our sense of public gets messy.  Some time in the distant hunting-and-gathering past, “public” would be no more than the handful of members of a small group, working together to feed, protect, and raise the young.  One certainly wouldn’t hold up ones offspring to the rival band of berry-pickers standing across the valley and say “Look what I made?!”

Maybe the broader Facebook-inhabiting public isn’t exactly rushing across the ether to do harm to my child.  If anything, we are slumped, drooling, and exhibiting nary more than a mono-syllabic, or perhaps more accurately “mono-emotic”, response.  Perusing the wash of “meaningful events” posted by others, my own reactions of “ “ooh”, or “cute”, or “yikes” are mere bursts of energy in an overall sense of “huh”.

I say this even though my wife and I do thoroughly enjoy seeing the many (sometimes too many) photos that friends post of their offspring.  Trapped as we are in our new routine, the computer screen is the only view we get of lives beyond our own: a Rear Window effect for the digital age.  A part of us longs to contribute, but then I go into a private/public tailspin.

Having a child is the most private and intimate thing I have ever done.  Posting on Facebook is anything but.  Where’s the line and who are we to decide that for our daughter?

I think forward to a time ten years in the future (or even less) when my daughter realizes that her entire life has been paraded in public for all to comment on and “Like”, without her permission.  If my sense of privacy is thoroughly in place, how will my daughter learn to have a private life herself, if every burp and coo has been made public?  Perish the thought of my daughter growing up to be constantly vigilant in how she is being perceived and whether she is being “liked”.

Our daughter is not our property to be shown off as a mark of pride for ourselves. Neither is she a pet or fashion accessory, dangled in front of public eyes as proof that we are fulfilling our social (and social-media) contract.  But we do wish to share, even if we can’t resolve the private/public tug-of-war.  So for now, let us share privately.  And yes, that includes texting, emailing, and even messaging, photos and snippets of video of all my daughters early moments. We are not living in the 20th century, after all.

Pixelated Baby 1

Non-Invasive Prenatal Testing (NIPT): A False Positive Story

Missing X ChromosomePregnancy sucks!

I know there are hoards of women out there who think otherwise and who take every opportunity to remind those not towing the party line that pregnancy is something blissful. But they are wrong. And yes, I’m a man telling pregnant women that they are wrong about how they feel.

My wife is pregnant (thank you, thank you, thank you, very proud, very excited, no idea what’s in store for me).

The first trimester was strange and surreal. A sense of relief that the system actually works. A puffy-chested manly-manly feeling that “I did that!” A simple reality as we saw a first ultrasound, heard a heartbeat, and said goodbye to the neighborhood sushi restaurant. And every time my wife went to the bathroom I held my breath in anticipation of miscarriage. She did too.

In what felt like forever and no time at all we were at week 12, the end of the first trimester. Standing at the gates of a public declaration of procreation, or rather sitting at the Social Security office to change my wife’s legal name (these things are always so banal), the phone rang. It was her OBGYN. The “NIPT” blood test results had come back to indicate that the fetus had tested positive for Monosomy X.

Monosomy X (also known as Turner Syndrome) is a chromosomal abnormality where a female fetus has only one complete X sex chromosome. It causes miscarriage in the majority of fetuses with the disorder, and those that make it to term can suffer from a wide variety of symptoms later in life. These include short stature, low-set ears, heart defects, infertility, scoliosis, hearing loss and many others. (Find out more here.) Choosing to terminate such a pregnancy is a common decision, and one that we were immediately confronted with.

Devastating news is a strange beast indeed. It warps time, contorts one innards, and distorts the senses. In a moment, the world is an alien and unknown place, its colors and smells unfamiliar and confusing: the dusty haze of the Social Security office, the buzzing of sound, and the smell of stale cigarettes emanating from the person sitting next to me.

We were told that there was a 99% likelihood that the results of the blood test were accurate, and that my wife needed a CVS test (chorionic villus sampling) to confirm these results. This test involves inserting a long needle in the uterus to remove placental material, which is then used to confirm the chromosomal makeup of the fetus. There is a short window of opportunity for a CVS test (usually between 10-12 weeks) and, similar to an amniocentesis, it carries a certain risk of miscarriage. Frantic calls were made, appointments were set, and we wound up the following day at the Prenatal Diagnosis Center at Cedars Sinai.

I find it hard to write about the week that this happened. Gut wrenching emotion, unrelenting and crippling as it was, is difficult to put into words. My wife and I, having gone through this together, share an emotional understanding that can be conveyed in a look (albeit a look we choose not to give each other very often). But how can one articulate such anguish to others? And why would you want to? In writing about a time of distress one either fails to convey it accurately, thereby missing the point of writing about it, or invites it back to take up residency. And I know I do not want to feel that way ever again.

However, I write because I found hope in reading what others had written: in the forums of people coping with similar bad news, and of the sliver of hope that the results would prove to be a false positive. Those were the stories I sought out, read over and over, and prayed for.

The test results of the CVS were to take 10-14 days to come in, and I knew neither my wife nor I could survive waiting that long. We opted to pay out of pocket for a FISH test (fluorescence in situ hybridization), which would give us preliminary results within a few days. Yes, this was expensive. No, I didn’t care. All that mattered was knowing definitively what we were up against.

And so we waited. And waited. I drifted in and out of work. We went to many a bad movie. We sat in silence. We cried. We slept poorly. We ate poorly. And all the games we played as parents to be (Do you think she’ll have your nose? What do you think of this name?) vanished from our repertoire. We were struck dumb.

That Friday morning, thick with grief, we got in the car to go see yet another movie. Not five minutes from our home, stopped at a traffic light next to our local gas station and a construction site (these things are always so banal) the phone rang. It was the genetic counselor at Cedars Sinai. The FISH results had come back and it was GOOD NEWS! The fetus was healthy. They found the missing chromosome, the missing X. The initial test was indeed a false positive.

We cried. We breathed. We called the few members of the immediate family that knew what we were dealing with to tell them that our nightmare was over. And then we went to the supermarket and stocked up on food.

What is relief? Knowing that everything will be ok? We still don’t know that. We have many weeks to go before our daughter is born, hopefully healthy, and hopefully followed by years of worry. What has happened, rather, is that we have jettisoned any sliver of innocence we may have had. That tiny moment in time when everything is utter bliss, and before all the anxiety of parenthood sets in, is lost to us.

Throughout this ordeal we learned of a whole new type of sorrow (who knew there were so many different types of pain?), but also a whole new type of appreciation and love for one another, and for the child my wife is busily building.

So we remain hopeful.  And grateful.  And eager to welcome our daughter into the fold to teach her a thing or two.  And for now we accept our reality of subtle but incessant worry, we laugh at the painful gas, and we revel in not having a clue what’s next.

Side Note:

The test my wife did was the “Verifi”. Apparently, all the documentation on how accurate these tests are comes from the manufacturers themselves. These tests have only been available for a few years and appear to be missing much needed independent scrutiny. The arrogance and cruelty of a company putting out information that promotes their product while subjecting people to unnecessary mental anguish is reprehensible. Were it not for the forums I read online, and the doctor who administered the CVS telling us he does indeed see a fair number of false positives, I don’t know how we would have made it through.

Selfie Rage

Dylan Thomas with Smart Phone

Dylan Thomas with Smart Phone

After posting my previous blog entry (6 Tips for Taking the Perfect Selfie) I was inundated by friends expressing their Selfie Rage via private email or text message.

“Thanks for ruining my morning,” writes one friend.

“I hesitate to post a public response to your Selfie blog because I am severely triggered by it,” writes another. “People are so annoying, puckering and flexing. Now I am angry. I think I will get drunk.”

Yet another writes, “I have a friend who looks poised, posed and perfect in every Selfie, then posts it publicly on Facebook, making me cringe.  Do I cringe because I cannot look as pretty in a photo or is it all the fun she is supposedly having? Is it because everyone else takes so many fucking Selfies…? WTF?”

For those of you perturbed by your emotional knee-jerk reaction, or should I say flood of searing fury, consider these bastardized words of Dylan Thomas:

Do not the Selfie try to fight,

Its phonyness is Facebook’s way.

Rage, rage against the dying of your plight.

 

Though wise you are and ever right,

Puckered Selfie lips have naught to say.

Do not the Selfie try to fight.

 

My dear, alas, you cry for spite

Of inane deeds, made public, that go not away,

Rage, rage against the dying of your plight.

 

Weaker souls than yours in social media delight,

And will never learn they have lost their way,

Do not the Selfie try to fight.

 

Grave men, and women, who see with blinding sight

The stupidity of others, to you I say nay,

Rage, rage against the dying of your plight.

 

And you, my friend, there on that sad height,

Waste not your condemnation, I pray.

Do not the Selfie try to fight.

Rage, rage against the dying of your plight.