What I Was And What I Am Not Anymore

Past tense carries so much weight these days.

I was pregnant.

Can you read between the lines there? Do you see what I am telling you now?

I am not pregnant.

This is not the grand announcement I was hoping to make. This ordinary declaration lacks the celebration I was looking so forward to sharing with the world.

For seventeen weeks and four days I was pregnant. I was filled with extra life, a second heartbeat, a fever for the future that would never quite come to pass. Every ultrasound reinforced my confidence that I could dare to believe in happily ever after again.

I saw his hands, his feet, his nose, his cheeks, his brain… all perfect. I heard his heartbeat… strong and fast just like his brother’s was years before. I was certain we were walking in those beautifully set tracks on my previous journey through an unexpectedly perfectly healthy pregnancy. All the wonder was so familiar. The joy sprung up. The fear dissipated.

I allowed myself to dream of filling this house with more chaos. I vividly saw my two boys tumbling through these rooms, climbing all over this furniture, tearing out into the yard, down the block, into the woods, playing hide and go seek, manhunt, and riding through the streets on their bikes until the sun went down. I saw Alexander smothering his little brother with suffocating kisses and hugs that were too rough. I saw myself exasperated with their energy, struggling to keep up — laughing and sighing my way through my days sustaining myself through double the little boy bear hugs, double the kisses, double the dirt, and double the giggles. I saw my husband being transformed into a human jungle gym, while he battled to introduce both of his sidekicks to all the superheroes the world had to offer — both fictional and factual. I saw his boys listening intently, secretly believing their daddy was the greatest superhero of them all.

I took tests out of precaution. I optimistically denied any option for bad news — sure, my body had a history of throwing some pretty nasty curve balls, but it knew how to build a healthy baby boy. I looked forward to the easy confirmation that all was well.

Calls came in. There was “an anomaly,” she said. I never heard of trisomy 18 before. Another rare disease, I thought, my body likes those… I asked her to repeat it, unsure I heard the words correctly. She sounded so sad, so apologetic, even though the test wasn’t diagnostic. “It could be a false-positive,” she said.

Then

why

did she sound

so

sad?

I was shaken, but sure my funky body was just throwing some curves the blood test didn’t understand. Trisomy 18 was bad news — particularly for boys — but my boy was strong, healthy, perfect. My conclusion? This was a false-positive.

I scheduled an amnio. I needed the test that had real answers. I needed the science to show the world where all my confidence came from. He was fine. The greatest horror was the risk of the amnio. We just had to get through the test. Minutes before the test, in the quiet of the tiny hospital bathroom, I cradled my bulging belly and told my little boy, “We’ve got this, Baby. Nothing to be afraid of…

Mommy’s here to protect you.”

I wiped the tears from my eyes, certain I fixed it all, certain my maternal power was omnipotent.

It was a lie to us both.

I had no idea.

Neither did anyone else. There were no complications during the test. In fact, the test went perfectly. My baby boy looked as healthy as ever. The doctor and the nurse both smiled. “Everything looks really good!” was said a number of times. The sadness from the previous calls had evaporated. My team of confidence was building.

We were winning.

Everything

was

fine.

Valentine’s Day struck the final blow. The results were in. Full trisomy 18 present. Translation: you will lose this baby. Only one torturous question remained:

When?

I only had to ask that question for four days.

That question only existed when I was pregnant. There were no more questions on the February 18, 2017, just one more angel in my army. Just one more soul to miss, because, on that day,

I

wasn’t

pregnant

anymore.

Nobody worked harder than me…

“Nobody worked harder than me today.” – Saul Blinkoff

There was a time in my life when I felt I could honestly say this same statement aloud without any judgement against those others who didn’t work as hard, and without any complaints about the insane amount of work I had been doing. That time was when I was a teacher. And I’ll bet, if you asked anyone who worked with me, or anyone who knew me at the time, they’d be perfectly okay with agreeing to this sentiment.

While I was never a morning person, part of the reason for that was that I was up to all hours of the night writing and rewriting lessons and activities for my classes, or prepping professional development for the teachers I was working with. I stayed in the school building long after all other educational personnel had left, befriending the custodial staff near my classrooms. I volunteered to advise weird and wonderful afterschool clubs. I called homes, wrote letters to parents, tutored kids, rewrote lesson plans with teachers, practiced activities with them, and I had fun doing it all. It’s just what I did. It’s how I worked. I knew no other way.

Then I got sick – a fact it took me a very long time to admit. Ultimately, I had to be hospitalized for me to face the truth. Well… I had to be hospitalized and then go into deep denial for about a year, and then I faced the truth. The point is, I got sick and I couldn’t work harder than anybody. In fact, I couldn’t work. It didn’t matter anymore how passionate I was about my teaching, my body wasn’t up for it. At all.

So, here I am, at home finally in remission, dancing around a new passion and wondering if I have what it takes. I’m wondering when I am going to, again, be able to go to bed each night saying those beautiful words:

Nobody worked harder than me today.

I want that feeling back. I miss it desperately. And every time I remind myself of how fulfilling that feeling was, a small, annoying voice pipes up with this bit of stupidity: That’s what got you sick.

Look, I can’t deny three and a half years of doing literally nothing every single day just to give my body the time and space it needed to heal. I can’t deny the treatments, the specialists, the doctor visits, the hell of all that time when getting healthy became my one and only full time job. I can’t deny the scar over my left eyelid where my doctor sliced me open so he could gain access to my optic nerve to cut some holes in it just to save whatever vision I had left. I can’t deny the actual blindness I experienced – the two years of being physically incapable of reading printed words. I can’t deny the tears from the pain, the loneliness, and all the confusion stemming from my rare disease.

I can’t deny any of it. What’s even more, I won’t deny it. But, here’s something new, I don’t think I am going to own it either. No one knows what caused my disease. Why the hell does that little voice think it is such an expert where countless medical experts fail? My work, my passion, my joy did NOT make me sick. It made me me. Writing also makes me me. I love this tap, tap, tapping at my keyboard. I love configuring letters in such a way to create mental pictures for those who look at them. What beautiful magic!

Here’s what I know:

Writing will never make me sick. Writing is the cure.