When you become pregnant, one of the first things you try to figure out about something so mysterious is the baby’s due date. The excitement builds. The dreams begin to take shape. When will this little creature come into the world? What time of year will it be and what kind of baby clothes will best suit the weather? What astrological sign will he or she be? What are fun birthday party ideas for whatever season it happens to be in whichever hemisphere you happen to be living in when your baby turns 1 and 2 and 10?

You see, this is how far the mind goes just finding out you’re pregnant. Once you pass the end of the first trimester, it goes even farther, to what he—because your doctor is confident it’s a boy—might be interested in, who he might look and sound like, and what it is he might show you about the world. After the anatomic ultrasound, it goes farther still… In our case, the anatomic ultrasound is where we learned about our son’s severe congenital heart defect, Hypoplastic Left Heart Syndrome (HLHS). Terror built. Dreams started cracking.

I found his name on a bench here not too long ago. I’ll include some other bench art coloring the streets here in Santiago.

Four days later on another continent, Ryan and I made the hardest decision we’ve ever had to make and we made it as new parents. We live with that decision every day and some days, for me, our anguish threatens to override the certain suffering and uncertain survival we spared our son based on the information we gathered from the specialists we consulted at two top hospitals in two countries.

In ten posts about my son, I have yet to link to his condition directly, as I have just done here. Honestly, I’ve been terrified to do so. I fear it opens us up to direct assessment and potential judgment although any of you can just as easily read between the lines about we had to do and run a search about his condition (with which I have labeled each post) and find the same information we did. Even though I find it to be limiting, I linked to the American Heart Association because my doctor directed us there and warned us about how much inaccurate information lives online. Our surgeon reminded us that statistics are statistics; the outcome of each case depends on each heart.

 

But I came back here to be honest, so I’m going to be. I’m scared that you will think we didn’t fight for our cherished baby. I’m worried that you will assess his condition based on a few links online and determine with some sense of confidence what you would have done and that it may be different than what we did. I’m terrified you will think his condition was fixable. I fear you will judge me. I’m sorry to admit that to you because not a single one of you has yet to show me anything but compassion in whatever form you are capable of showing it. But what if I tell you more?

Some of you held onto hope during those horrible days when Lorenzo was still growing inside of me but we knew his heart was not going to function on its own in our world. You told me you thought he chose us and that we were here to guide his every breath, perhaps implying we should let him fight for those breaths. You told us we could still be his parents and that he could still have a good life, perhaps implying we should give him life no matter the shape or condition or length of it. You told me things that were meant to be helpful, but you told them before you or I knew what we were going to do. Now, those words ring out in my head sometimes. I have to keep breathing as the ringing subsides and I remind myself why we chose what we did.

 

Every story/every choice is unique; that’s why the preservation of reproductive rights is so paramountly important right now. I think the uniqueness is what gets lost in the shuffle a lot of the times when politicians argue and a contingent of uterus-less men often of a certain age, race, and faith says things about what women not only of all ages, races, and faiths, but also circumstances, cultures, classes, and medical conditions should do with their uteruses. I’m going to link to a few unique stories so that uniqueness is clear:

* “Un-bearing” by Mira Ptacin and published by Guernica

* “Knocked Over: On Biology, Magical Thinking, and Choice” by Martha Bayne and published by The Rumpus

* “The Only Good Abortion Is My Abortion” by Maggie Koerth-Baker and published by Boing Boing

* “A Voice for Shelby” by Erin Greenough and published by A Heartbreaking Choice

 

Ever since this happened, I’ve looked for other narratives in order to make sense of my own, knowing full well there is no other narrative that matches ours exactly. These stories, like every one of us, are too unique for that. Still, the final story, about Shelby, is as close as I’ve found to what we experienced with Lorenzo. It’s as close as I can come right now to telling you exactly what happened. I think all of these women—these mothers—are incredibly brave. I think their publishers are incredibly brave. I have been strengthened by the bravery and strength of character and love of child it took for these women to write publicly.

I am trying to muster a similar bravery and strength, but in my public writing about my son, I am slow to articulate that week of our lives—mine, Ryan’s, and Lorenzo’s—when everything changed. Privately, I am writing out every excruciating detail, so that I will always know what happened and so I can come back to our choice when I need to. One day, publicly, I hope to help other parents who make and come back to their decisions. Maybe, just maybe, I can also change some minds—and hearts.

 

It’s September. Our son was due to be born this month, in a matter of days from now. Ryan and I are planning a trip up north to Peru to honor him and to try to find some peace alongside the Pacific Ocean and together as two during a time we were preparing to become three. We are already, in the hardest way possible, a family of three.

If I can, I will tell you more about that trip when we return. If I can, I will write more in the meantime. For now, the due date looms, I read these essays when I need strength, and I continue to tell myself what we did even though I can’t tell you, even though all I do is tell you. I continue to believe we did what we had to do as the only two parents of our only son with his only heart. Maybe for that reason, he did choose us. Maybe–and oh God, this is where it’s especially hard—we still deserve to be chosen again.