Invisible Grief

Maliyah’s birthday is coming up, which means I’ve been living in the grief and loss community for almost a year. It seems crazy to think how long it’s been, and it’s been a blur.

There are so many terms I’ve learned in the past 11 months. A lot of them are medical, like Diluted Russell Viper Venom Time (not related to a snake), but some are death and grief-related. Something that comes up time and time again in this community is the concept of  “disenfranchised grief.” According to WebMD, the Wikipedia of medical issues, disenfranchised grief is when a person’s grieving doesn’t fit in with the larger society’s attitude about dealing with death and loss. There are a lot of examples of this, like when a person’s pet dies, and society thinks it isn’t a “bad enough” loss. Or when someone dies from suicide or addiction and society says that it’s the person’s “fault.” Other examples include loss of something that isn’t a death, like divorce or loss of a job. Society tends to think these things aren’t “as bad” so you don’t have the “right” to grieve them in the same way.

Most people agree that losing a child is REALLY bad. But what if the child is someone who never lived outside your body? Then it doesn’t count.

I sometimes think of late term pregnancy loss as disenfranchised grief, but more often, I think of it as invisible grief. It’s something that no one else sees, both literally and figuratively.

I feel like the one good thing about typical grief is that it brings people together. There’s a whole concept in Judaism called shiva where people come together for seven days to discuss their loss and accept the comfort of others who maybe knew the person who died. But in the case of late-term pregnancy loss, no one knew the person who died. No one met her. No one saw her, not even in photos. Some people may share photos of their uterus but that’s not really my style. In a lot of cases, people didn’t even know Maliyah existed!

I recently went to a work conference that was full of land mines. I work for a membership organization with more than 1500 members. I never announced my pregnancy to the members, and there was no live birth, so most of them had no idea. The last time I saw most of them, I was pregnant, but in secret. There were so many conversations that began, “how was your past year?” Or “it’s been so long! What’s new?” Or my favorite, a person who called across the hall to me, “everything good, though, right?” NO. Everything is NOT good. Everything is shit, actually. But you can’t say that to tangential colleagues, especially because nobody knew what happened, nobody knew the person who died, and some people wouldn’t even have considered her a person.

It’s less hurtful to have people ignore or not see your grief when those people are minor characters in your life. It’s a lot worse when it’s close friends or family. The hard part is, I know it’s not intentional, but it’s hurtful nonetheless. And since the grief is invisible, the hurt is, too.

I had an example of this at Christmas. I brought Maliyah’s ornaments with me to Texas, where I was celebrating Christmas with my in-laws. We celebrated Christmas with them last year when I was 4 months pregnant with Maliyah. Everyone in 2022 knew I was pregnant. Everyone talked about it a LOT.

When I arrived in Texas this year, I told my sister-in-law that I brought ornaments to hang, and she instructed her son, my 15-year-old nephew, to hang them. He took one look at her name and said, “who’s Maliyah?”

Here’s the thing, I know he’s a kid. I also know that it’s quite possible her name was never spoken in their house. But if she was alive, he’d know who she was. They’d be first cousins! They are first cousins. And yes, it’s very possible he never even knew she was born. I know people are weird around death, dying, grief, and kids. Some people think they can’t handle it. And I get that he never met Maliyah, but he knew all about her the year prior when she was in my body, and the next year… POOF. No recollection.  When he asked who she was, I just said simply, “remember how I was pregnant? She was my daughter who died.” End of conversation. I could have ignored it, but he asked a direct question and I wanted him to know the answer. For me, the hole in the family is gaping. For others, it’s not even visible.

I held off on publishing this post until I broke the news about my new pregnancy because now, Maliyah and my grief about her death is even more invisible. I follow enough loss accounts on social media to know that this is common. I know that most people believe a new pregnancy “fixes” the previous loss. This seems absurd if you think about your baby as a person. No other humans are just replaceable or interchangeable.

I saw a post on Instagram that said, “this is how it would sound if we responded to every loss the same way we respond to baby loss.” There were six slides after that, where they went through different scenarios, like if someone’s father died, and someone said, “it’s ok, you can always find another dad,” the way people say, “you can always have another baby.” Or if someone says their sibling died, and someone answered, “at least you know you can have siblings” the way people say “at least you know you can get pregnant.” There were 4 more examples, equally as disturbing, but equally as true. I heard all of those things.

It was less than one month from Maliyah’s death when people started asking if we had considered “trying again” or if we were allowed yet to “try again.” The “again” word, as if we could just replace Baby 1 with Baby Version 2.0.

My grief has become more invisible as people now think of Maliyah as a stepping stone on the way to our happy eventual family. I heard concrete examples of this in the reactions I heard from people after announcing our new pregnancy.

There is an added wrinkle here, which is that to others, there is an extreme sense of déjà vu. My new pregnancy is less than two months off from the previous one, so when we told family before Christmas last year, then this year we were at Christmas again, announcing a pregnancy again, it seemed like Groundhog’s Day. I understand that it seems repetitive to others, and that it seems like the same thing.

To me it’s not. It’s a new pregnancy. A different baby. I repeat a mantra to myself every single day, “different pregnancy, different baby, different placenta, different outcome.” But to outsiders? It’s the same.

When we started to share the news of this new pregnancy, we received messages and phone calls, people saying they were praying for us, that they can’t wait to celebrate with all of us together next year, including the new addition. But, they said the exact same thing last year. Same prayers. Same hopes for a Christmas with a new addition. And then there was no new addition. And no mention of her whatsoever. Nothing. All I saw in church at Christmas was the baby in the row ahead of me, and the baby missing in our row. But to everyone else, they saw the same old Emily and Chris, with no living child and the same possibility of one growing.

People like to look forward, especially when the present is uncomfortable. People like to have hope and belief that things will improve. But for me, I need to hold both. I have the loss of Maliyah in my mind still, and I always will. Of course, I hope for a different-looking holiday season next year, but I also hoped for that last year, and I didn’t get that, and no one acknowledged that. I didn’t forget last year, it was only a year ago! The “yes, and” is STRONG in my head, like the dialectical thinking I mentioned last week. Yes, I’m pregnant. Yes, I may have a baby next year. AND, I still have a dead one. Forever. And I remember what everyone said last year. The hopes and the excitement that people seem to have forgotten. I haven’t forgotten.

I had a full breakdown on Christmas Eve. I explained to Chris how I know people don’t think they have memories with Maliyah because she was never outside of me, but I think of all of the times I had with friends and family when she was with me as memories I have with her.

I have 150 days of memories with her. 150 days of memories of her. I have 150 days that I still think about. But no one else does. It’s strange to feel that those memories are completely invisible to others. It makes ME feel invisible. I’m working on this feeling, trying to feel less invisible, or make my feelings more visible so it’s less lonely. This blog is part of that. I’ll take you with me, whether you like it or not.

(Written at: 11 weeks, 3 days)