How to begin? It’s a question I ask often, both out in the world and here on the page as I introduce myself to the incredible community that is Pregnancy After Loss Support. Out in the world, I look like a regular mom. I take my 18-month-old daughter, H., with me wherever I go. I feel fortunate to be home with her right now, writing on weekends and while she sleeps. Before I turn in, I peek into her dark room and wait until I hear her lungs take in and expel the summer air. I’m H.’s mom; it feels like my deepest truth. But it is paralleled by my being Lorenzo’s mom, which sometimes feels even deeper because few see it. He will always be my first child. I got to carry him for nearly six months.
“Then we lost him,” I might say, leaving it at that.
We live in a conservative state after moving back to the U.S. from Chile, a conservative country. I don’t always know with whom I’m talking, though most of the people I’ve spoken with face to face have been compassionate. Eventually, usually, I tell the whole truth. That he had a fatal heart defect. That the interventions needed to possibly prolong his life felt like prolonging his death. They were too extreme, too painful for my husband and I to put him through. So we let him go peacefully, painlessly. I met him still instead. I held him for one hour. That hour crosses my mind during each one that has passed since, adding up to these three years.
Then I had a miscarriage. Then I had my daughter.
You might say I need a definition, so it doesn’t take such time and strength to explain all that has happened. I can tell you what hasn’t worked. First and foremost, “abortion.” Before I held my son, I did not picture my experience when I thought about how I would ever need one. I’d actively labored and delivered and met my child. “Termination,” seems to carry less of a stigma linguistically, but not culturally in our country. In my search for other mothers like me and stories like mine, I came across “therapeutic abortion,” which feels closer to the love sometimes required to let go. The gynecologist and obstetrician who treated me called it “interrupting” the pregnancy. I appreciated that then and do even more so now. It’s important to find the right words.
The same is true for my son. While he was born still, he wasn’t “stillborn” as the term is commonly understood. That 1 in 160 pregnancies end in stillbirth doesn’t include mine. The statistic that does include mine is actually unknown, so it shouldn’t be any wonder why moms like me can feel so misunderstood. We aren’t even documented. The stat closest to my experience is only about abortion: that between 1 and 2 percent occur after 20 weeks.
Although it may be the most straightforward definition, I never referred to myself as TFMR (termination for medical reasons) until someone from PALS did so recently. My first feeling was relief, another example of what a community in solidarity can give. Here was a term—loaded, yes—but nonjudgmental and based in medical fact. It didn’t even specify to whom the medical reason belonged, the baby or the mother. In utero, they are literally one in the same, at least when it comes to oxygen and nutrients and blood. Lorenzo felt so much a part of me (and still does) that I, too, felt incompatible with life when I learned his heart was. In that sense, it was a medical reason for both of us. As a term, it explains just enough.
While our culture is bent on definition and categorization, I believe it is up to each of us to define our experiences of loss. A chosen term, name, or acronym can validate an experience by revealing how common it may be even though we often feel alone when our journeys begin. A friend and fellow loss mom felt similarly recently when I referred to her experience losing her son at 24 weeks as “pre-term labor.” She also tends to tell the story the long way because her experience with cervical incompetency felt so rare and specific. But her cervix was opening too early, and that is labor. A simple redefinition removed a bit of the undo burden we carry when we feel like we lost control, that we could have stopped whatever it was that went wrong. My friend and I lost our sons a month apart. We both marveled that three years later we are still figuring out how to talk about and understand what happened to our babies and our bodies.
As we go on, we continue to redefine life after loss. When I was visibly pregnant with my daughter and kept being asked, “Is this your first?” I was often tongue-tied. I was scared and hopeful, which is exactly what “pregnancy after loss” is. But was my daughter really a “rainbow”? While it may be the right word for many, it’s not how I think of her. I don’t think of my son as the source of a storm; he has provided so much light. When I was pregnant, I often wanted to take language out of it altogether and hold up a card universally understood as the “my first baby died” card. It’s comforting to have a term but what more, really, is there to say?
I’m a mom. I chose TFMR. Today, I’ll start there.