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.
VG: Well, she died when Fletcher was about one. So she saw me through my pregnancy. She was there on the day Fletcher was born.
JFB: Did you think about Penelope when Fletcher came into your life or did that shadow disappear?
VG: Well, when I first got pregnant with Fletcher, we had to talk about if we were going to do a larger-scale testing, if we were going to go for more tests earlier. Although the issue with Penelope was not genetic and there was no indication that we would ever have any difficulty again, it’s more about they wanted to know what we wanted based on our comfort level.
So I had to make a decision early on. Was I going to worry the whole time? If I started I wasn’t going to stop. I could worry about the testing. I could worry about the pregnancy and then the labor and what could go wrong. Then I could worry about will he sleep through the night or do we have to worry about SIDS or dear God, how do I ever put him on a school bus? How do I ever let him go off to college?
So, I remember making a conscious decision: Now I start thinking with faith. I’m going to do all the smart things. I’m going to get the right tests that I need to get, but I’m not going to go overboard. I’m not going to make a habit of worrying.
So from then it was like, okay, this is a new pregnancy. This is all new. Everything’s fine. It was like a mantra and a discipline I had to keep. It was hard.
JFB: Veronica, I’ve heard some couples that I know who have lost children say that it was a thing that just ended up dooming their relationship. The couple just couldn’t survive that sorrow. So you had that happen to you, but then you got the great blessing and gift of Fletcher. You and Ray separated six years after that. Do you think that the loss of the baby in any way is connected to that marriage not surviving?
VG: Yes, because Ray was incredibly supportive and caring and he’s a very conscientious person. So when he saw that I was hurting he was very respectful and deferred to me. So he was taking his cues from me, which was not exactly in our best interest.
He waited for me to come around. I wound up feeling unwanted because here’s the man with the male libido and he doesn’t have an inherent desire for me. So it was demoralizing and lonely.
JFB: Did you feel that he didn’t have the desire for you because of what had happened with the child?
VG: No, I don’t think it was true that he actually didn’t desire me. That was just how it came across.
The real problem was when my mother died. Then I realized what a keystone she had been, even in my marriage.
I was in the shower I think the day after she died and I was shampooing my hair. I allowed myself to just cry for fifteen minutes in the shower first off every day. I stood there and I thought, My marriage could really be in trouble now without my mother.
It was like the shining golden center of my heart was gone. I didn’t even have me to replace it with.
I had to grow up and figure out who I was and be much more self-determined.
JFB: Do you think you’ve found that now all these years later?
VG: Yeah, definitely. I’m autonomous to a fault. I really used to look to my mom for a sense of judgment. When I had a decision to make I always considered what she would think.
So what I had to learn very quickly was, hey, there was only me. There is no one else in the world who can live my life for me. There’s no one whose judgment I will substitute for my own.
JFB: Do you think of yourself as having two children? Do you think of Penelope as your daughter that died? Or do you feel that you have one child?
VG: Fletcher is an only child. When I think about her at all, she would have been ten years old, I remember, Well, no, she would not have. She was very badly disabled and compromised genetically. She was never going to have a life.
I think it’s very different for parents who lose a healthy living child because they can imagine that child growing older and I never could. I never imagined that she was going to live beyond the next moment—maybe a day.
Sometimes I’m sad that I never had a daughter to raise, but I feel a lot of joy with having my boy. He brings me happiness that I didn’t know I could have with someone who’s so different from me.
JFB: What do you think you know about children now that you didn’t know when you were our nanny?
VG: Well, I know that I don’t have to love being a mother, which I sometimes don’t. It’s hard. It’s really hard work and it’s painful. Sometimes it’s aggravating. But I always know when I go to bed that I will love him again when I see him in the morning.
I guess what I’ve learned is that it’s okay to be conflicted about it. It’s okay to not love the pain and the fear and the stress and the anger.
I’m still human.
I’m a mother, but I’m still myself.
* The names of all the individuals in this interview have been changed, at the subject’s request.
SUSAN MINOT
© Hugh Foote
It was a Monday morning and there had been an ice storm the night before. It was in January. The Boston-to-Maine railroad line goes along the coast there just below our driveway. Usually there was a little ding, ding, ding, ding, ding at the crossing with an arm coming down.… That morning [my mother] was on her way to an exercise class. There’s a big barn blocking the view of where the train would be coming from. So you couldn’t see it.
Susan Minot is the second of a group of seven siblings and the mother of a ten-year-old daughter, Ava. She is the author of the novel Monkeys, as well as the collection Lust and Other Stories. Minot lives in a high-ceilinged apartment in the West Village when she is not on North Haven island in Maine. As we spoke, Minot sat on a couch mending a hole in a lon
g black jacket with a needle and thread. She said the fringe was made of monkey fur.
JENNIFER FINNEY BOYLAN: What’s the difference in age between your youngest sibling and your oldest?
SUSAN MINOT: Well, the first six of us are within nine years of each other, and that’s including the seventh baby, Ellen, who died. Then there was a six-year gap and my youngest sister. So I think it’s fifteen years between the oldest and the youngest.
JFB: So what effect does coming from such a large family have on a child? How did it change who you are?
SM: I think it’s too many children for two parents to cover. People say, “Oh, it must have been great. So many children in the family, it must have been fun.” You’d say, “Well, yes. I’m close to my siblings.” But I think large families may fall short in helping a child’s development, if attention from a parent is of primary importance. I mean in our family we can count on our hands the number of times that any of us were ever alone with one parent, much less two. I mean, I can’t even picture me ever being alone with both my parents.
JFB: Ever?
SM: Except randomly out on the lawn standing beside both of them.
JFB: Did that make you question their love in any way?
SM: Not at the time. I was one of a group, and that’s how our parents were with us. At a certain point, children start parenting each other. We had each other.
I think as a daughter I definitely defined myself in terms of my sisters—we were the three oldest—probably a lot more than I did in terms of my brothers. It’s as if the boys—there were three of them too—were another unit down.
My older sister is different than I am. The characteristics that she had of being responsible, looking out into the world to sort of piece things together, made me not, I think, develop so much those characteristics. I felt, “Well, that’s being taken care of here.” So it allowed me to be a little more dreamy, which I was inclined to be anyway. She would always be the first reconnaissance person to head out into the world and she was very good at reporting back to us what was going on. So I could indulge maybe a little more in my fantasy world.
Stuck in the Middle with You Page 24
