Weighty in through the looking glass.

Perhaps I’m not being gentle enough with myself for all the other things that are weighing on me.

We did all of this genetic testing, both before and during my pregnancy, and he ended up with something that stares me in the face every day, something I had never even seriously considered the possibility of passing on. It’s hereditary in about 30% of cases, but I was the first person in my family to have it, so I thought it was idiopathic, a fluke.

Sometimes I feel like such an asshole. My childhood was not always easy. I remember waking up from surgeries. I remember my mother pinning me down on the ground, screaming as she put in my contact lenses. I remember unkind classmates. I remember unsympathetic teachers, and the discovery of important accommodations way too late.

We’ll do our best to empower him, to give him agency, to advocate for him. There are so many more resources these days. But I hate that he will have to deal with any of it. And I have a hard time, sometimes, separating this part of my childhood from the rest of it. I fear I’ve doomed him to all the pain I felt and still feel.

Most hereditary forms of this are autosomal dominant, which means any future children we have would have a 50% chance of inheriting it. Are we okay with that? I’m not sure yet, and so I find myself mourning every milestone with our son, afraid that he will be both our first and last baby. (I am starting to lean toward thinking it’s OK. My vision isn’t perfect, but it’s good enough. And so far everything has presented very similarly with H.)

Getting to and through the surgeries was hard on both of us. Watching his blindness progress, wondering how successful the surgeries would be, worrying about how his little body would handle anesthesia. Little things triggered full-body sobbing - spilled food, deciding what to order at a restaurant. And then afterward, so watchful for any sign of infection, so much anxiety over every bit of redness. One afternoon we were so worried about something we saw that we took our friend’s car, without asking, and drove over 30 minutes for a last-second appointment with the surgeon, just to check. It’s taken a toll on our relationship; we’ve been impatient with one another, quick to anger.

The anxiety, anxiety we thought his birth would cure, seeps into everything else. Sometimes I think I’m watching David descend into darkness. I’ve encouraged him to see someone, but the last time he tried looking for an available therapist who takes our insurance it was so discouraging. He’s asked me to help him find someone, like he helped me, but it’s hard for me too. I don’t want to let him down.

My mom came in for the second surgery. It was hard for reasons I can’t completely articulate. She wasn’t very supportive, but I didn’t really expect her to be. We danced around talking about my infancy, a source of shame for her and a lot of unknowns for me - about my father’s family, where I lived, who cared for me. I watched her interact with others and felt overly conscious about my own behavior in a way I haven’t for many years. It was obvious she is still very disinterested in David’s and my life and was solely here for the baby. It was sort of exhausting to accommodate. None of it a surprise, but still hard.

We’re flying to visit both of our families this month, and I’m becoming increasingly anxious about managing our time there. It feels like no matter what we do, it’s never enough for anyone. And I know that will just be exacerbated by the baby. David’s mom has this utterly irrational fear that I’m going to keep the baby from her because I’ll suddenly want to only spend time with my mom, and she’s already acted out in bizarre, hurtful ways because of it. It doesn’t help that my mom keeps (sort of?) joking about hogging the baby. Just for once I wish we didn’t have to be the ones making all the effort.

We’ve only had sex once since I gave birth. It was painful, and I’m afraid it will continue to be painful. I miss the intimacy. But we haven’t had a good opportunity to try again. We were dealing with the emotional mess surrounding the surgeries, I got an IUD, and then my period came, surprisingly early since I’m exclusively breastfeeding.

The period has been another source of sadness. I didn’t expect it at all. It’s one of those milestones in this journey of pregnancy and early motherhood that I’m not ready to let go of. And maybe more significantly, it’s bringing up a lot of old emotions around unsuccessfully trying to conceive after our loss; the last time I had a period that wasn’t the herald of sadness was in July of 2017.

I suppose in some ways I expected that he would be born and suddenly all would be right in the world forevermore. I don’t know why. Circumstances change, relationships change. It’s not always a bad thing either. But I was really longing for more certainty, more security for now.