#dilv

In early October, just a few days after my husband Ryan’s birthday- we were given news that the genetic testing we had been going through for our 2nd baby was indeed abnormal, as we had feared and certain early markers had indicated. It was most likely Down Syndrome. I cried in the car to my Mom as my husband ran into the pizza shop next to the hospital to get me lunch on the way to my first day of working at my new job. It was raining. After a miscarriage last year that left us both reeling, we had struggled to connect to this pregnancy. To allow ourselves to get excited. We were hoping so much for relief and instead it felt like we were playing this game of poker that had gone all wrong and we couldn’t fold or leave and had no idea what terrible cards would be drawn next. The deck seemed stacked against us. 

After some confusing and contradicting information from the genetic counselor and doctors and perinatologists- we decided to get an amniocentesis because it was the only thing that could actually give us a solid answer when it seemed like we were drowning in all the maybes of statistics that so often don’t end up meaning anything at all when you’re in that random 1%. I also figured out that while the amnio did carry with it a small chance  of miscarriage, my chance of having a miscarriage anyway was actually higher. It’s funny the information they choose to tell women. We scheduled the amnio and did our best to think positively- something that at the time felt insulting. Sometimes still does. 

We had been planning a trip to Disneyland for months for our daughter Rosy’s 4th birthday. We had no choice but to have the amnio just 2 days before we left. We promised ourselves we’d get lost in celebrating her, lucky to be in a place where they do all they can to shove the joy right down your throat. The morning of the appointment, I was nervous, numb. I mostly dreaded going back to that awful, poorly lit clinic where it seemed like nothing but bad things happened. They sat us down with Jenny the genetic counselor (with whom Ryan and I had both had multiple confusing, sometimes contradicting conversations and had concluded privately that most likely, was a moron.) As I sat at the little round table in her office and she rifled through pamphlets like she wasn’t selling us the disparate possibilities of a grim future, but instead was selling us insurance or some moderately used car, I noticed the framed certificates from Portland Community College certifying her as a genetic counselor. What a terrible job to have.

She told us they would do a detailed anatomy scan before conducting the amnio. They were looking for other indicators of a chromosomal abnormality. The Nuchal Measurement was already high and the blood work came back borderline, or possibly negative? It depended on who you caught on the phone to ask. It was enough to warrant concern and this new found ill-fated relationship with Jenny the genetic counselor. The biggest thing they were going to look at was the heart. Trisomy 21 (Down Syndrome) comes with a Congenital Heart Defect more than 50% of the time. 

I was back on my back in that dark ultrasound room. Before the doctor came in I was cracking jokes with the technician, who seemed friendly. She told us it was a girl. We had been convinced it was a boy because I had been so sick, so much sicker than with our first. Ryan made a joke about being relieved because “boys just set shit on fire.” Once the doctor came in the technician and doctor began mumbling to each other quietly, deliberately so we couldn’t quite understand them. Then the doctor left for awhile and the technician wasn’t as friendly anymore. When she came back she told us it looked like there was something wrong with the heart. She couldn’t diagnose it- but thought that with everything else it was a very strong indication that the baby indeed had Down Syndrome. She highly recommended we get the FISH test- which would get us results on DS specifically within a few days. I held in soft hiccupy sobs and she stuck the 10 inch needle in my belly. Ryan watched the baby grab for it on the ultrasound as I kept my hands over my eyes. 

So we went to Disneyland determined to show our Rosy, our sunshine girl- this human representation of our experiment gone “right”- the best time of her life. Not to let this dark sadness and confusion cut through her well deserved, whimsical joy. The universe could sucker punch me, but so help me  I would protect my already living baby from this sorrow. A baby with Down Syndrome, guaranteed to have major heart problems, and likely other major health complications. We were at a loss, but as the days went by, we were drifting closer to the conclusion that maybe we weren’t cut out for that. Would I want to live that way? I wasn’t sure. But one DS diagnosis increases another. We had just recovered from a near second term miscarriage last year and it all just seemed...wrong. “Is there any chance we will have a.... healthy baby?” I asked her.

“No.” She said.

Rosy had disappeared into Goofy’s house in Toontown when 3 days later my phone rang. It was an Oregon number. We decided not to get any news until after we got back to Portland. I picked up anyway. There are few things worse than my imagination set wildly free in the dark unknown, at Disneyland. I felt so self conscious of my burgeoning belly. I wanted to just take it off and hide in a dark hole. “Well it’s not Down Syndrome” she said. My heart sank. “I know. We thought for sure it was too, but it’s not. We think you should move forward with scheduling an appointment with a cardiologist. There are 63 other chromosomal abnormalities we are testing for and should know about those by the time you come in for the Echo.” What? Wait. What?? What did we do with that information? “Is this... good news?” I asked. 

“I don’t know. I mean what’s good news?” 

10 days slowly passed and we were finally back at the dreaded poorly lit clinic where nothing good ever happens. Except we found out all of her chromosome tests came back normal. Was that good? I had lost my sense of expectation, direction or grounding. I guess it wasn’t bad? All it was was not what we thought it would be. Again. 

The cardiologist eventually gave her the diagnosis of Double Inlet Left Ventricle. Click on that link if you want the dirty details but it basically means that she has 3 chambers in her heart instead of 4. She will require major, multiple reconstructive surgeries after she is born. 

 I am 29 weeks now. We have pretty much decided on naming her Iris. She is OK as long as she’s in my womb- but shortly after birth will require her first of 3 open heart surgeries at 5 days old. The second occurring between 3-6 months, the third between 3 and 6 years. After many conversations with our parents we decided to go home to Salt Lake City, UT to deliver her so she can have her first surgery, the Norwood,  at Primary Children’s Memorial Hospital- a highly nationally ranking children’s hospital where 3 sets of our parents also happen to live. 

They call babies with congenital heart defects, “heart warriors.” A term I’m trying to embrace. On days when I feel sad, when the worst case scenarios are painted in comic jewel tones dark and clear, or the haunting stupid statistics and the paranoid and unhelpful anecdotes that swing both ways creep into the heaviness in my chest, when people tell me how “strong I am” and I still don’t know what that means- I think about her genes. About the women that came before me; the babies they lost, the ones that survived, the husbands involved and not so involved, the dismal medical technology of yore, and I am grateful our Iris is coming to us, today and not last year or 30 years ago, or 50, that she has her woke-ass, non-toxically masculine Dad who cries with me, with us, and hopes with us, who put up her crib with his strong, gentle hands, like some physical way of taunting the universe, showing it that we aren’t scared, when we are. I think about the fact that she has the blood of Oakies and Mormon Pioneers, Sailors and Ranchers; of these people who had to survive their own journeys across different kinds of mountains and seas. I feel her flopping and kicking around in there and sometimes I think maybe she really is a warrior and maybe everything will be OK. 

*Language Warning*

This whole experience has been such an interesting human experiment. Aside from the obvious emotional roller coaster we have personally been through as a family- it’s been fascinating to watch other people react. This is the first, or I guess I should say the most, really serious life and death thing that has happened to me, to us. I have always been an extreme extrovert, shocking people with my language and opinions since basically I learned how to speak. As I have aged and the sometimes unobviously rigid parameters of propriety have burned me- I have learned when it’s better to just keep my mouth shut- though it often requires special occasion. (I’m certain some people who know me and read that have already balked. “When might that be?”) It took being 29 weeks pregnant to write my first blog post about what’s been happening, but I think a lot of that delay was the moving of the goal posts. It took a long time for us to really understand clearly what was happening. When it first became clear to us that something was really wrong and that we were looking at major health complications for the baby, my step-mom warned me that people would be weird. My twin half sisters were super preemies, so she had been through the NICU nightmare and saw firsthand how people twitched at the thought of a baby tangled up in tubes.

Babies are like these beacons of hope, these beautiful physical representations of the future, of promise, health, fertility, love, sex, procreation, LIFE. Anything else and it’s like a records being dragged backwards against the needle. It just seems unnatural. It ruins the music. And yet- anyone who has been down the road of miscarriage, infertility, poor prenatal diagnosis, and even regular old healthy pregnancy and childbirth and the debilitating fear that tends to go with it, knows that biology can be cruel, and she often is. It’s a darkness that once you’re privy to, you can’t unsee. I recently watched Boss Baby with my 4 year old and I thought of the cartoon mom, “that kid is 7 and they are just having their second? Ugh she probably had some kind of fertility issues. Poor thing.” Or now that I am the size of a large gestating mammalian creature, as I waddle unsubtly down the street, I notice sometimes women avert their gaze, cast their eyes downward like they don’t want to look directly at me and I think, “Oh no. I hope my giant belly isn’t bringing up awful feelings of some post traumatic pregnancy issue- maybe I should tell them it’s not perfect.” But I don’t.

I remember after going through a miscarriage last year being stunned at how painful it was compared to how painful I thought it would be (because every pregnant woman imagines in the long 12-14 weeks before you’re out of the “safe zone” what it might be like to lose the baby.) Based on movies and the general shushed untruth that tends to go hand in hand with all things intimately related to reproduction in general, I didn’t understand how primally shattering that would feel. Though maybe no one does until they do. Everyone would say “it’s just the loss of promise” but it was more than that. It was the first time my body, my inner voice, my sense of confidence in the nature of things- my BIOLOGY completely betrayed me. I remember someone said to me on the phone “this isn’t a tragedy.” I hung up on them. It took months for me to even think about getting pregnant again, and even then I had to plan it six months out to be sure I was ready. I made it a conscious, extroverted effort to not be ashamed of my pain or my experience. To talk as openly as I could about it, no matter how uncomfortable it seemed to make people feel. (You know, in relevant context- I didn’t exactly wear a “ask me about my miscarriage” t-shirt- but...it’s not TOTALLY out of the realm of possibility that I might. Also I live in Portland so.)

1 in 3 women will have a miscarriage. The more I talked about it- the more those stories floated to the surface, and every woman who told me theirs still had that saddness in their eyes, no matter how long it had been, or how far along they were. They call it “suffering a miscarriage” for a reason. In many ways I am grateful for having already learned, and not that long ago, that my sense of what nature should be could be wrong, that the floor can fall out. It's been helpful to know that before we started on this current path with Iris. Somehow, while all this has been obviously painful- it wasn’t as surprising.

Social Media is a funny thing for hyper-extroverts like myself because the self doubt and fear of scrutiny or thought of people I love being embarrassed on my behalf generally doesn’t sink in ‘til a few days after the post. Wait- I am brave for sharing? Does that imply that I am brave for telling people and putting it out there despite what everyone thinks? Oh god, what does everyone think? Oh no- am I exploiting this awful situation for the brief feel-good of a "like"? Or So-and-so didn’t “like” the post, or say anything to me about it. Are they ashamed of my post? Too intimate? Too far?

We had another echocardiogram last week and it was really the first time we got to leave that awful poorly-lit clinic not deflated, in tears. They told us her A/V Valves and Pulmonary arteries are looking strong and healthy, we got to see her sweet face up close, so clear now with her little turned up nose and plump lips, and weighing in at nearly 5lbs it’s looking like she should rival or beat her sisters 8+ lb birth weight. All. Excellent. Things. A huge part of this challenge has been this subconscious inability to picture the future. I think any pregnant woman feels that way to a certain extent, but with this I can barely think past March, much less to preschool, teendom, adulthood? The end of pregnancy is so physically challenging that I feel like the excitement of the promise of your baby that’s just-around-the-corner helps to cushion the blow of the wait and the discomfort. When you aren’t exactly thrilled about the scary impending chapter, you’re just left with sore hips, insomnia, and a baby sea otter lodging its skull into your pelvis at the same time it wiggles it’s little toes up underneath your ribs. The high of the positive doctors visit quickly gave way to it’s sharper edge. Now that it was so easy to picture our big fat beautiful baby, it was also easier to picture them taking her from me; prodding and poking her, opening her chest, sedating her, all of the violent details sinking in leaving me feeling gutted.

I am the head of marketing for Portland Gay Men’s Chorus and we are embarking on a huge year for the company. Beijing Queer Chorus is coming to Portland for their first public performance in the U.S. and PGMC is headed to China in September as the first LGBTQ Chorus to tour there, ever. It’s a big deal because China isn’t exactly up to speed on equal rights when it comes to the gay community, (many members of the BQC still perform wearing masks to protect their identities) and the parallels of where they are today, and where the U.S. was in its early years of the company in the 1980’s are glaring. We are making a video to highlight those parallels and the historic significance of this year for the chorus. So I woke up last Saturday morning and had to go into work downtown to meet with the filmmaker and do the first batch of interviews, despite feeling cloaked with sadness. I knew it would be good to take my mind off things and get out of the house.

Gary was the first up in the interview chair and immediately launched into the raw realities of what it was like to be a gay man in the 70’s and 80’s in America. The unflinching history of being threatened constantly with violence, taught by his mother to walk less gay, losing scores of friends-that-had-become-family to AIDS (in the midst of being blamed for the epidemic) and the constant fight against all odds, just to live authentically. Harvey Milk told them to come out- come out to everyone you know despite what consequences it may bare because to live authentically is the only way to be free. Then they shot and killed him. The founding members made the conscious decision to put “Gay” in the organization name, despite how uncomfortable it made so many feel, because that’s who they were, that was the message they were spreading, and it required that for them, in the name of authenticity, to be acknowledged for who and what they really were. After a lifetime, and generations of suffering from being locked in a closet- so many had to learn by society widdling them down- to just say fuck it, and be their true selves at whatever cost. Anything else is prison.

I am so lucky that I love my job. A huge part of that I think is that I so deeply appreciate an environment with little to no bullshit. I found myself watching Gary’s interview feeling relieved and affirmed. Doing something bigger than yourself is always important for perspective, but doing something in the name of authenticity is imperative to human growth. While I completely understand not everyone is as extroverted as I am, I am confident in the ways I have chosen to handle this. To not be scared to talk about it.To be upfront with my experience and my feelings, despite trepidation of what others might think. If only for the hope that someone else out there- living with their own raw and real life situations, feeling trapped in their own closets, wearing their own kinds of masks to shield themselves from what society might think or do, that they might take comfort in knowing they’re not alone, either.

5 weeks til she is born.