Trisomy 18

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~~~ Flashback Post ~~~
Trisomy 18 (Feb 24, 2015)

It was day seven of "the wait" as I sat at the conference room table at my weekly staff meeting. My heart was a little racy and thumpy in my ears as I turned off my phone and turned it over… I sensed "the call" was coming.

We finished the meeting two hours later, and as I began walking back to my desk, I felt the phone vibrate in my hand. I looked down to an unknown phone number with the correct area code... My heart lept, knowing it was "the call."

I answered with a shaky breath while grabbing paper and pen.  I swiftly walked back to a far room and closed the door.  I sat down at the table, where only a few weeks ago I had sat scrabpbooking, a day filled with conversations and laughter with friends.  Now it was quiet and clean, my little piece of paper the only thing on the table.  I longed for the carefree time of life before all "this."

I blindly redialed numbers and we got the three-way call set up, and soon our genetic counselor began giving us the results.

I was waiting for the “Turner Syndrome” words, fearing the “Down Syndrome” words, and was shocked to hear the words “Trisomy 18…”  The whole world fell out beneath me.  I had no idea what Trisomy 18 even was, but I knew it was bad, and I knew it was the ultimate “worst case scenario" diagnosis.

She continued to talk, I blindly scratched a few quick notes, trying not to cry. At the moment of conception when the cells divide, for some reason the 18th chromosome splits three times instead of two. The further the conversation went the worse the information was.  90% of these babies die in the womb before nine months.  Those that do make it to term will either die during childbirth, or very shortly after.

No chance of survival.  Our baby would not live, and would not be going home with us.

I could hear my husband through the phone, and I knew he was crying, which only increased the intensity of my emotions. There we were, once again, both trying to absorb this barrage of information coming at us faster than we were able to process. What a utterly horrible moment in time.  Horrible.

At the end of the phone call I asked if they knew what the sex of the baby was.  There was a pause and then the quiet words... "Yes, it's a girl."

I could hear open sobbing on the other end from my husband, and I just couldn’t go on.  I could.not.go.on.

The phone call ended and I just sat there alone, sobbing loud, ugly, snot-filled sobs for what felt like hours.  The call had ended with both of us crying and I wasn't sure if I should call my husband back, or what I should do about him. I was suddenly filled this odd fear for him for some reason. Picturing him in this big muddy masculine world of construction, in all his tears, all his weakness, and his unknown mindset.  I didn't know exactly where he was, I didn't know if he was alone, I didn't know the level of his stability...

I just didn't know anything anymore... It was like there was a screaming tornado inside me pelting with me paralyzing shrapnel with a darkness enveloping me outside from all corners.

I sent a text and then just called him, not even waiting to see if he would reply. Through his tears I made out the words that he was going home.  I told him I’d meet him there, but I didn't honestly know if I had the capisity or willpower to get myself there.

I finally walked to the office still a sobbing mess.  I put on my coat and others came over, hugging me.  I said I just needed to go home, unable to talk, continuing to sob… I finally got out the words that it was worse than they thought – there was no chance of life – and it was a girl.  I pushed off the arms holding me and blindly bolted for the door, overwhelmed by the desire to escape the building... escape the moment... escape the reality... escape the life I currently was caught in.

But the building was the only obstical of that moment I was able to momentary, physically escape from.  Everything else came with me. Suddenly everything inside me was swirling, screaming, and panic filled. It was a crisis-mode reality spinning out-of-control within every cell of my body, and I was unable to escape.

I got in my car and made it from the building to the end of the parking lot before I found myself gasping for breath and filled with complete and utter anger at God. A real, shaking rage. This was the most unfair, most unjust possible thing.  I screamed obscenities through a clenched fist to the Heavens.  In absolute disgust, filled with snot, tears and spittal I spat “This is the ONE THING you DO NOT FUCKING mess with me with!  DO YOU HEAR ME?!? This is the ONE thing that I have desired MOST and You have denied me all these YEARS!  WHY THIS?!?  WHY in the world would THIS be Your answer to my wish, my dreams, my prayers?!?  WHY THIS?!?"

I was angry.  I was furious.  I was heartbroken.  I was utterly devastated.

I had so many emotions I was left emotionless.

I arrived at home and sat on the couch until my husband walked through the back door.  We met in the kitchen, hugging and crying together.  We sat down on the couch in utter silence, on our phones, each typing in the dreaded words in the search engine.  I clicked on the webMD website link.  I read one small article, with all the horrifying details of the condition and a few heartbreaking photos. I sent a copy of the link, with no other words, to my best friend at work.  I clicked the window shut and turned off my phone.

I swore I would never read one more article, not one more word about it again.  Ever.

 

A little while later, my boss, who is also our pastor, pulled in the driveway and came in.  It was all still so fresh, so intense, so unprocessed.  We talked, but I was an emotional mess, and rational enough to know it, which made me even more mad.  I didn't want to be a total babbling lunatic. I didn’t know what to say... what to think... what to pray.  Everything was muddled and repeated, a tangled web of raw emotion.  I repeated over and over my immediate anger at God. We were less than an hour into this diagnosis and I was already fearful I would end up old, bitter, and separated from God. I did not want my faith to be lost, jeopardized, or even minimized, but I had no idea how I was going to prevent that. This is the deal breaking kind of crap that can cause the rift of separation from religion, leaving one on the brink of insanity, addiction, and suicide.

God had just assigned us to a journey neither one of us chose, and neither one of us wanted to be on. And there was no off ramp.

We were soon alone again and aimlessly pacing around the house. I commented through my tears that no matter what, we could not let this end our marriage.  We could not let ourselves get messed up in anything. Yes, I apparently watch too much television… too many Discovery Channel “Intervention” episodes, too many reality shows of bitter, angry, divorced, failed marriages after some traumatic event in their lives occurred which they just couldn’t process and get through together.  I made him promise me no matter how mean, how ugly, how unkind I was going to be (because that’s how I get when I’m upset and trying to deal with things I don’t want to – I lash out on others in an ugly and selfish manner).  He promised me he wouldn’t, although at that moment I can’t say I totally believed him.

We sent a message to my parents to pick up our youngest from daycare, and to bring him home at 7:00pm…  When they arrived we started his shower and as he splashed and sang in the bathroom we sobbed and hugged my parents telling them in a few short words what we’d found out earlier.  They returned home to process the news within their realm of reality, and we put on our normal faces and finished up showers and bedtime routines and climbed into bed.

There was no sleep that night for me.  There was a horror show on repeat within the deepest recesses of my mind, body, and soul.

I got up in the morning not knowing what to do with myself.  Do I go to work? Do I stay home?  Do I tell everyone? Do I tell no one?  Do I figure out how to live?  Or do I figure out how to die?

I put on a hoodie and my best “all is good” face.  I got Isaiah to school.  I got myself to my desk at work.   And I faced the new reality of being caught in the crazy vortex of having to live, to go forward, to face the next moment, to face the next day... when I had no idea how to get my feet to put one foot in front of the other in any sort of forward direction.

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