Stuck in the Middle With You: A Memoir of Parenting in Three Genders (36 page)

So we thought, Well, huh, okay, well, that’s not great, but all right. We still, of course, started to worry, but frankly we didn’t know how bad the options could be. We were fairly oblivious, thankfully.

JFB:
So how long did you have to wait before you saw the next doctor?

VG:
It was within the week. That office was very different. You knew the people in there were there because of high-risk pregnancy.

It wasn’t like the happy family practice with babies rolling around on the floor and lots of smiling expectant parents. Everybody that was there did not necessarily want to be there. You could see it on their faces.

So then I went in and they did the sonogram first. This was a much higher-level sonogram. It’s like with this unbelievable dildo-shaped sono-wand thing. Nobody had prepared me for that. That was maybe my first indication something was going very wrong very quickly.

The doctor said—couldn’t see anything for a few minutes. He was like, “I don’t see anything. I don’t see what they’re talking about.” Then he changed the angle of it and he goes, “Oh yeah. There it is. I see it right there.”

So the baby had fluid on the back of the neck and then he was able to see that there were some spots on the brain that didn’t look right. Really got a very good view that this was not normal.

JFB:
So is he saying all this while you’re lying there?

VG:
Yes. And he’s going, he’s like, “Yep, there’s that. Yeah.” He’s like, “Yep, I see it. Yeah, I see it. I see it.” And we’re going, “What?” He’s just like, “Yeah, and I see, yeah, okay, yeah.”

We’re like, “ ‘Yes’ what?”

So he said, “I definitely see the swelling on the back of the neck and I’m seeing some things in the brain. We want to do amnio right now.”

And then they jabbed a six-inch needle into my stomach.

JFB:
So by the time you left there did you know what was wrong with the child?

VG:
In these situations there was a high likelihood of Down syndrome.
So we thought that was the worst-case scenario. That was hard. That was painful to think about. We left that appointment really quite shaken.

JFB:
What were some of the things you were thinking?

VG:
I think my mom came up for that because I remember being in the back of the car and she was driving. I was in the back of the car and just trying to stay calm. I’d just been through this horrible appointment where this doctor is just being clinical and we’re seeing things we don’t want to see and then I have a giant needle stuck in my stomach. It was horrifying.

So I was just mostly in the back trying not to lose my shit. I’m shaken up, hurting, and worried. And thinking, God, what are we going to do? What is happening?

JFB:
Do you remember what you did that night?

VG:
I laid on the couch mostly.

JFB:
How long after that did you get the official word from the doctors?

VG:
Oh, it must have been three or four days. During that time I became reconciled to the idea of having a Down’s baby. I thought things could be okay. The doctor called Ray at home. I was walking home and I knew that they were calling him. I knew he had been on the phone.

So then when I saw him walking down the street toward me, I was like, Oh, shit, it’s bad. Then I just started crying.

JFB:
What did he tell you?

VG:
They said it was trisomy 18. We had no idea what that was. During this whole time I’d kind of reconciled over the couple of days. I thought, You know what? If it’s a Down’s baby, it’s still my baby. I will love him or her and we’ll make it work. We’ll figure this out. I had truly reconciled to that. That was really hard and that was painful, but by the time we got the call I felt at peace.

But Down syndrome is trisomy 21. It means the twenty-first chromosome is triplicate. So they said, “Well it’s trisomy eighteen. So the eighteenth chromosome is triplicate and that’s incompatible with life.”

JFB:
Is that the phrase they used?

VG:
Yes. The fetus’s brain is misshapen. Sometimes these babies don’t have a brain. It affects significantly the large organs like lungs and liver. It has a lot to do with organ development. There was a ninety percent chance that the baby would die before birth. Then once the baby was born it would have had a fifty percent chance of living through the first week. I don’t know if I’m remembering all these percentages right, but it was like it was a death sentence.

Like if this baby is born it will die soon after. If it somehow survives, it will not be able to recognize you. It will not be able to eat. It will probably be born with some or multiple forms of cancer. It lives in a mostly vegetative state. It cannot recognize its own parents.

JFB:
So you and your husband, Ray, have been given this terrible news. How did you figure out what to do next?

VG:
Immediately we just started crying. We called my mom.

JFB:
And she came to be with you?

VG:
Yeah. I think she stayed for—she may have stayed for a week. I don’t remember.

They said there were three options. One, I could carry the child to term. Second option was to have a surgical abortion. Or they could induce labor and go through the birth process at twenty weeks or so.

We talked to my mom. We talked to our friends. Our friends came to visit, too. We were really on the fence. We were like, well, neither choice is—this is all just a shit show start to finish. There’s no good option here. So we didn’t really know how to see through it.

JFB:
How long did it take you to decide what to do?

VG:
I think about a week, week and a half.

JFB:
You must have tried to imagine the different scenarios. Tried to imagine the different ways that your life would be different depending on what choice you made.

VG:
Right. We didn’t really think about how our lives would be different. I thought about, What can I live with and what is the best, what’s in the best interest of this baby? I was willing to go through whatever I needed to go through. If it was in the best interest of the baby to carry it to term, then I would do that.

If it was the sort of thing where I could carry the baby and then
it could get medical treatment, then I was willing to do that. But the prognosis was beyond that. It wasn’t only just death. It was pain. This baby would have no recognition of anyone and would be in a lot of pain and then would die. I couldn’t live with that.

JFB:
Do you remember the moment you made your final decision?

VG:
Yeah, I remember Ray and his friend went out and I was alone in bed. I just had an evening to myself and I was in bed and I just reconciled with saying good-bye and I said good-bye in my head.

I did decide. I didn’t want to pretend that this is nothing. I didn’t want to do the surgical intervention. I thought, I’ll induce labor.

Which they did, two weeks later.

JFB:
Veronica, I can’t imagine how hard that must have been to go through labor for a child that you know is not going to live.

VG:
Yeah.

JFB:
The way most women get through labor is you know you’re going to have a baby at the end of it. You didn’t have that.

VG:
No. It was a very small child at that point and they gave me drugs literally because they weren’t worried about the health of the baby. I was pretty well medicated. So, the actual labor progressed a lot faster than anyone would have thought.

JFB:
Was your mother there?

VG:
Yeah, my mother was there and Ray was there.

JFB:
How did you get through that?

VG:
Oh jeez, it was literally one foot in front of the other. It was, okay, what’s the next thing? The next thing is I need a pillow and I’m going to bring it down to the car. Okay, what’s the next thing? The next thing is I get in the car. What’s next? The next thing is, we get to the hospital. It was moment-by-moment thinking.

JFB:
Was the child alive when it was born?

VG:
I don’t know. I was pretty out of it. If it was, it was only for a minute or two.

JFB:
Did you see the baby after it was born?

VG:
Yeah, I held her and we all held her and we spent a fair amount of time with her and then my—

[
A lengthy pause
.]

JFB:
I’m sorry, Veronica.

VG:
It’s okay.

[
Another pause
.]

JFB:
Do you want to stop?

VG:
I’m okay. So.

The visiting minister from our church came and baptized her. So, we were with her for a fair amount of time.

JFB:
But she had already passed away by that point.

VG:
Yeah. A baby that age can’t survive without being intubated and/or receiving very serious medical intervention.

JFB:
Can you describe for me that moment you’re holding the baby?

VG:
I was in a haze. I want to say almost thankfully. It was less emotional than what had led up to it because there was no intellectual turmoil at that point, or emotional turmoil. It just was what it was. Now we were down that road.

There was no more deciding. There were no more surprises. We knew exactly. All the decisions had been made and gotten us to that point. So it was just simply just being there and feeling sad, but knowing that we were moving through it.

JFB:
You had the baby baptized. You’d already picked out a name?

VG:
Mm-hmm.

JFB:
I guess some parents would not have named the child and just not done that. How did you decide to do that?

VG:
Well, it was the same rationale behind deciding to induce labor. We couldn’t pretend that this wasn’t a big deal. We didn’t want to say, okay, so let’s end this pregnancy and move on. It was about doing it in a very conscious way that mirrored how much it meant to both of us.

I think that honestly I went a little too deep into that.

I was in a very bad spot for a long time because I had intentionally decided to feel it and to experience it very thoroughly and deeply. Then it just got incredibly difficult to pull out of it.

JFB:
You mean in the months afterwards.

VG:
Yeah. Even within a couple of years. It still affects me.

JFB:
How do you think it still affects you?

VG:
I have at least three friends who were pregnant at the same time
as I was. So, their children now are ten years old and every time I hear about them I think about—it’s even on Facebook, what these kids are up to. I always think of how old my daughter would have been.

JFB:
You named her Penelope?

VG:
Yeah.

JFB:
How did you pick that name?

VG:
We’d just been hunting through names and then that one sounded nice. So we looked up the meaning and the history of it and it seemed like it was a really suitable name. It’s part of the legend of Odysseus. That he had traveled for all these years and he came home to his wife, Penelope, and in the meantime she’d been instructed that she needed to remarry and she said, “Well, as soon as I finish the quilt that I’m making for Odysseus, then yes. I will marry.”

So she spent all day making this quilt and then at night she spent her time unraveling it so that she’s never done.

For us it meant the task that is not completed, the end that is never met. It meant the promise unfulfilled.

JFB:
You said that you felt you went a little too deep into that. Am I remembering that you had a memorial service for her, didn’t you? Did you have a funeral and everything?

VG:
I did a death announcement that I sent out. I hand-made those.

JFB:
I remember getting it.

VG:
I made thirty or forty of those and sent those out to our closest friends and family.

JFB:
I remember how incredibly sad I was when I got that, Veronica. But I also remember thinking that there was a kind of wisdom in it, of a very dark kind, and it made me admire you so much. I think about the way people keep things inside and live their lives in secret and just carry their grief forever. I thought it was very brave and courageous to share that with people. Do you think it was a mistake though to send those out?

VG:
No, although—I know I was taking a risk in being misunderstood. Maybe I would come across as a little hysterical or melodramatic.

JFB:
Do you think some people had that reaction?

VG:
Not that they shared with me, but yes. I don’t know. Mostly we got calls, like, “Oh, I received that and it was so sweet.”

JFB:
How did that loss affect you over the next couple of years?

VG:
Well, it made me incredibly scared of sex. Made me incredibly scared of trying again because it had just been so heartbreaking. So my marriage really suffered.

JFB:
How much after Penelope’s death was Fletcher born?

VG:
Let’s see. He was born in 2003 so I think that was—yeah, that’d have been three years later, three and a half years later.

JFB:
How did you come to that moment that you could face that again?

VG:
Well, therapy and willpower, I guess. It was never a dream that we gave up. It was more like, how do we get our relationship back on track so that we have that kind of intimacy? Yeah, we just had to barrel through, I guess.

JFB:
Somewhere in there you also lost your own mother. Caroline died in the midst of this whole terrible period.