"She looks a little weird. We're gonna run some tests."

Is what the doctor at a hospital in Oshkosh, Wisconsin, actually said to me after my daughter, Aurora Lillian as we came to call her, was born. Not a great start for a 23 year old, now mother of one, after just having gone through 13 hours of labor (for the first time ever), and having that only child whisked away by a group of doctors. 

And as I sat recovering in that hospital bed, my mind started reeling. 

What did I do? What's the worst it could be? What in the actual fuck do you mean she "looks a little weird?"

I'm not gonna lie - when I found out I was pregnant I was freaked out. Although, at the time, I was starting to think about stepping back from acting, even though I was going back to Utah that summer to work for the Utah Shakespeare Festival as a wench for the pre-show festivities. And I was weighing my options. All of them. I had always wanted to be a mom. When I was a kid, I said I was going to have three girls and name them Faith, Hope, and Charity. Seriously. But life changes things.

I flew to Utah that June and worked as I had the two previous summers. And at some point over the next few weeks decided to see a doctor in Cedar City to begin the process of welcoming a baby into the Universe.

All the tests were run, and they all came back normal. Everything was fine.

They said.

I finished out the summer in Cedar City and flew home September 4, 2001. A Tuesday. And had plans to go back to my waitressing job and work as long as I could stay on my feet. And then a week later, there I was, sitting on the couch, staring at the television, wondering what the hell kind of world I was bringing a baby into.

9/11 aside (and I'm not trying to be flip about it, but that's a post all its own), life went back to normal. Work, growing baby, work, growing baby. Aurora's due date was around the beginning of February of 2002 and we were making plans to bring her into the world, although at the time we didn't know she was a she. Aurora for a Girl, Darius for a boy. 

The beginning of February came and went. Then another week. Then another week. Apparently this kid just didn't want to come out. And because of it, I went in for one last check on February 22, 2002, and was admitted to the hospital for my doctor to induce labor. She was going to come out whether she liked it or not. 

Things were relaxed and normal until 3am on February 23rd, when my water broke. And that's when the team noticed the meconium, meaning the first thing we needed to be concerned about was Meconium Aspiration Syndrome.

 
Thanks, Internet.

Thanks, Internet.

 

And as the hours passed, the labor intensified (as it does for everyone, duh), and I'm not sure exactly when they had me start pushing, but after quite awhile of it, she still wasn't coming out. I was ordered to an emergency c-section.

Mind you all of this is without the benefit of drugs.

Because, for some reason, against all that I'd hoped for, I signed the release form for an epidural and soon after I had to start pushing, which is too late. *SHAKING. FIST. IN. AIR*

I do remember being wheeled down the hallway to the operating room and being told that if I had to push, to keep pushing. And how MIND. BLOWINGLY. PAINFUL. THAT. WAS. And one of the nurses was yelled at right in front of me for sticking in the catheter before I was anesthetized, and how MIND. BLOWINGLY. PAINFUL. THAT. WAS. But Jesus, when I finally got the drugs, the world was right again. 

Cesarian sections are a funny thing. Here you are, on the table, with a curtain in front of your face, and you know full well they're going to yank a human out of you, and you can feel the pressure, sort of, but you can't see it. Thank GOD. And here's the other funny thing: Most of the time, for better or worse, I handle stressful situations with humor. But sometimes with a whole mess of facetiousness. So as the human is getting yanked, I'm telling my doctors (pointing at the anesthesiologists standing behind my head), "Hey, you know these guys here? These guys are my best friends. You guys? Fuck you guys. But these guys are AWESOME." 

I said a bunch of other stuff too, so much so that a few weeks later, my OBGYN called it the funniest c-section he's ever attended. But the laughs were over when, as soon as she was out, they let me give her one quick look, then she was gone to the NICU. And I was sent to my room for recovery. To wait. For the worst.

"She looks a little weird. We're gonna run some tests."

Said the little bitch doctor. The signs were there. Eyes wide set. Jittery eyes indicating her brain isn't developed to where it should be. A simian crease on one hand. Yes, that's what they called it. A. SIMIAN. CREASE. At least back then. To my face.

Thanks, Wikipedia.

Thanks, Wikipedia.

As you can see there, the actual term is a single transverse palmar crease. And she had one. It comes from the hand bones not forming normally. Instead of curving in slightly, they fold straight down.

I don't recall exactly what I said after that, but I was pretty well exhausted. And upset. And after that the next couple of days are a blur. At some point, we did go home for a night to get a good night's sleep as my doctor ordered, leaving Aurora in the NICU. And I don't remember exactly how fast the genetic test came back, but when it did, it was a doozy.

A Partial Trisomy of the 16th Chromosome with X P-Transposition and Possible Deletion.

It doesn't even have a name. Like Down's Syndrome. Something with a title. And oddly enough, I had taken a few genetics classes in high school and college and understood mostly what this meant. Lucky me. Part of her 16th chromosome somewhere along the line triplicated (VERY. VERY. EARYLY. AS IN NANOSECONDS, REALLY), instead of the normal pairing. This extra genetic material then attached itself to one of her X chromosome (the top "p" end, as it were), possibly deleting part of it in the process. Although to this day we don't know if that deletion actually occurred. At a certain point, some things just don't matter. 

I also knew enough about genetics to know this was not good. And, in fact, could be very, very, very, bad. And we were told as much by the genetics specialist we were referred to at UW-Madison University Hospital and Clinics. (Great place, by the way). He said be prepared for her to never speak, never walk, never talk, and on and on (I'm tearing up as I write this. Still can't help it when I talk about it). I think I was pretty well in shock and don't recall asking too many questions, but I do remember the one. I said, if we decided to have more kids, what are the chances of this happening again? Should I have amniotic fluid tests and what not? He kind of smiles and says something like, oh the chances of it happening again are in the billions. To which I say, "Well, what were the chances of it happening in the first place?" And he just shrugged. Point taken.

We took Aurora home and I began to deal as best I could. I say me, because it's unfair to speak for her dad. I can tell you, from my end, from day one he was the strong one. And continues to be to this day as far as that's concerned, although I've learned a lot about how to deal in her 15 years on this planet. But it's been a struggle for sure. I went through bouts of depression, as I'm sure every parent does in this type of situation. And my nerve, or anxiety if you will, still buzzes something fierce. And coming from a background where I really didn't have the best examples of parenting, I struggled with even the basics as well. And I will still sometimes cry after taking her to the park and being hyper-aware of all the stares. I did the best I could, and continue to strive to try to be the best parent I can for Aurora every single day. But I do fail at times. Trying to balance it all out, I fail sometimes.

As far as her development is concerned, she hit all her development marks until she was four months old. Then she just fell off the chart.

And I would say now she's just on her own chart. I stopped writing in her book of development steps. It would just make me sad. I think she started walking in the 18 month range. But she DID start walking. And although her proportions are off (long torso, or arms and legs, whichever), and she's developed a spine curvature, and her legs tend to curve in, she's still walking today. 

And talking. And singing. And dancing. And laughing. Boy can she laugh.

And I'm sure she WOULD be an actor if I could get her to follow blocking (the movement on stage, for the non-theatre readers), but she may just have to settle for working in the box office. She does have hearing aids, and her speech is really difficult to understand for a lay person (meaning people outside of her immediate family circle), but I can understand about 95% of what she says. I understand 95% Aurora-ease. And as Aurora's stepfather is originally from Poland, sometimes I joke maybe she's just speaking Polish and I just don't understand. 

So there's that too. Also as it happens in many other cases, Aurora's dad and I didn't make it. And I'm not at ALL putting that on Aurora. Medical issues just serve to add to the stress. But now almost a decade later, it's hard not to say everything happens for a reason. No matter how much I fight that notion. Because now, she has two families (who think she's pretty damn great) to rely on. And as they, say, it takes a village. 

So as I try to navigate Aurora, a family, and theatre life, I will say again: I fail a lot. But I'm trying to get to the point where I don't beat myself up about it, take everything as a learning experience, and

just be the best Mom, ┼╗onka*, Daughter-in-Law, Friend, Actor, Theatre Activist, (HUMAN) that I can be.

That I can be. THAT. I. CAN. BE.

*Wife in Polish, if you don't speak it.

And I love my Aurora. My Goobs. My PIMA (Pain in My ass). My Forever Child. She's a weirdo just like her Mom. And she loves ALL the Disney Princesses most of all. 



1 Comment