Pregnancy and Infant Loss Remembrance Day 2021

A couple of months ago, when I was spiraling down a google rabbit hole of grief, I saw that Pregnancy and Infant Loss Remembrance Day was a national holiday. I felt vindicated. Finally, a day that acknowledged bereaved parents of babies. A national holiday that acknowledged the importance of my daughter, of all angel babies. The vindication did not last. I quickly learned that there are so many national holidays. You’ve got National Soft Ice Cream Day, Linguine Day, National Punctuation Day, and National Frappé Day, and that’s just barely scratching the surface.  When you see there’s a day dedicated not just to ice cream, but soft serve, it makes this gut wrenching day seem so trivial.  There’s just no adequate space that has been carved out for those who have lost babies. This is me trying to carve out that space.

Today is Pregnancy and Infant Loss Remembrance Day. If this day resonates with you, then I’m sorry. I’m just so sorry, and I wish I could hug you. There is nothing to say to make it better. There is no silver lining to be found. All I can tell you is that you are not alone; we are not alone. You are not cursed; we are not cursed. There is nothing wrong with you, or me. We are victims; victims of outrageous fortune whose slings and arrows cut so deep that we no longer recognize ourselves. Part of what makes healing from pregnancy and infant loss so difficult is the silence around it. The silence is awful for two reasons. First, it makes you feel like the loss of your baby was not the loss of a person, whereas it was. Second, silence is not something we are comfortable with. We feel the need to fill it with something. I filled mine with guilt, judgment and shame.

My daughter, my beautiful, precious, fully formed, fully human daughter was born on March 9, 2021, at 2:26 AM at exactly 37 weeks of pregnancy. My birth story was something else! She came so fast, after only an hour and a half of labor. It’s like she knew she had no time to waste. The doctors’ notes state that “Elise was born with a good start.” So, you can imagine the shock and despair we felt, when one week later, the doctors told us that she was dying, and it was going to happen in the next few hours. They could not stop the seizures that started two hours after her birth. I held Elise and I nursed her. My husband and I were also with her when she gained her wings and left this world on March 16, 2021, exactly one week after her birth.

It’s been seven months. I think about and love my daughter who’s exploring heaven right now as much as I love my son who’s racing me down the hallway on most afternoons. I want to share her with the world. She was just so beautiful. I like looking at her pictures that are up all over the apartment, even if most of them are with tubes and electrodes on her head. She is my baby.

On many occasions, when I show Elise’s picture, I’m met with silence. I understand. I say this with zero judgment because I would do the same thing a mere seven months ago. Death is not exactly a conversation catalyst. It lurks, and you want to escape this creeper who keeps hanging around in the shadows of your life’s party. You also don’t want to upset even more this person who is going through a tragedy and say the wrong thing. But not saying anything, is saying something, and it doesn’t feel good. You can just say I don’t know what to say, which is a good start. If you see Elise’s picture, you can say she’s cute. It doesn’t matter if you think it or not, or if you think it’s too sad to say something. Believe me, we will be sad about her loss for the rest of our lives. We want to live remembering her, and cherishing the seven days we had together.

What I never want to do is avoid talking about Elise.  Not speaking about her feeds into this feeling that because she only lived a week, people think she hadn’t reached full personhood. No one has ever said this to me- thank God. But like I said, silence doesn’t linger, especially when it’s uncomfortable. You fill it, and we filled it with this feeling that maybe people don’t realize that she was our child in the most complete sense.

So, if you see an angel baby’s picture, you can say she’s cute, and that’s it. It’s the standard thing we all say to parents who show pictures of their kids. Think of all the pictures of your friends’ kids that they’ve shown you. You know there is only one thing to say – “they’re so adorable!” or some version of that phrase. Parents are naturally proud of their kids because it is sort of a miracle that we make these tiny humans. It doesn’t matter if they’re physically here or not. But believe me, Elise was super cute- too cute for this place for sure. If you’re reading this, and you’d like to share stories or pictures about your angel baby, please do. I would love to talk about our kids.

Often, when I’m walking around the city, I like to picture everyone around me who may have an angel baby. Our angel babies, who are invisible to everyone but God and themselves. They’re resting on one of our shoulders supporting our heads with one of their wings, helping us keep our head up as we learn to live without them.

In the days, weeks, and first few months after Elise left, the silence was unbearable. Life became very still, and it happened way too fast. The week that Elise was with us was the busiest week of my life. We were glued to her bedside, adoring her, smelling her, and holding her hand as the machines beeped and buzzed pumping what seemed like a hundred different serums into her tiny body. The only time we left the hospital was to eat, or go back home to our son who was a very confused two-year-old. We had at least one meeting a day with the doctors telling us how progress was going, and we were visited by a nurse at least every hour. After we laid Elise to rest, a horrible emptiness set in, and a silence that was so overbearing that my husband and I could only speak to one another in whispers. It overpowered us.

I did not want to see anyone in that silence. Thinking of seeing anyone made me think of being judged. The same way I had so carelessly passed judgment on different stories of baby loss that I had come across before Elise. Often, I would find a reason why these couples lost their babies- “oh they must be genetically predisposed to certain illnesses;” “some people are mismatched genetically;” “there must be some structural issue that doesn’t allow her to carry the baby to term;” or “she was over 35 when she had the baby.” We say these things to comfort ourselves. We want to think of all the reasons that it won’t happen to us or those we love. The thing is losing babies just happens sometimes, and it can happen to ANYONE. This post is not to say that baby loss is common. I don’t want to scare anyone. Thank God, most people can get pregnant, have healthy pregnancies and healthy babies. Our species would be in big trouble otherwise, and look around, there are plenty of “us”. No one will be putting ‘humans’ on the endangered species list in the near future. In fact, the debates have all been centering on how we are way too many.   That being the case, can we just accept then that those of us with angel babies have bad luck? It’s so much better than making assumptions about what possibly went wrong. The thing is even if you do find a very concrete reason for a loss like being a carrier of a deadly disease, you may be completely unaware of it. You most likely have no idea. I know a few examples, and I’ve only been scratching the surface of this topic for a few months. I wish we could see pregnancy and infant loss like a car accident. Sometimes you do everything you can, but your car crashes or someone crashes into you, despite all your best efforts to be safe. When you tell someone about your tragic car accident, no one thinks there is something wrong with you or something different about you that makes you pre-disposed to accidents. They accept that it just happens sometimes.

I do see that there is a push to destigmatize pregnancy and infant loss. When beautiful celebrities like Chrissy Teigen share their painful stories with the world, you don’t feel like some cursed woman who society shuns.  Chrissy Teigen’s story will always resonate with me because our babies were due just two months apart. After losing Elise, I read quite a bit about her son, Jack, and it helped me not feel so alone. I also made a concerted effort with my husband to see and talk with friends once our families had to go back home. Having our friends come to visit us made me realize that all the judgments that I thought they harbored were not true. There was no reason to feel shame. They didn’t see me as defective; I was still me, and they all acknowledged the permanent hole that Elise’s passing left in my heart.  These friends saved me, and I will forever be grateful for your check-ins, visits and texts.

I don’t think those of us with angel babies will ever get to the point where we’re “better.” I no longer want to die; but wow, I hope that is not the yardstick that we use to measure how well we’re doing. One positive thing that I can say is that somehow, we are moving forward with our grief. I didn’t coin this wonderful phrase. I got it from Nora McInery’s Ted Talk, which I found during my quest to figure out how to live after Elise died.   God, is it hard to move forward, but somehow, it’s been seven months since Elise went to the other side, and we’re still here. I’m alive. We went to grief therapy. We can make small talk without it feeling like we are the most socially awkward individuals you’ve come across. I slowly started working again. Last month, we even hosted a party. In a way, we’ve broken the silence. By all accounts, it looks like we’re “better.” We still cringe at this word, and I’m sure if you’re reading this and you’ve lost your child, you do too. Better means that you’re back to your old self; you’ve recovered. That’s the thing though- we know that we cannot recover. Nothing will make it okay. If you’re living without your baby, you’re doing the impossible.

I struggled a lot with how to end this post. I felt a big push to end on a positive note. Something that would make everyone, including myself, feel better at the end. Our society craves a happy ending, a story of triumph in the face of hardship. I started to write something in that vein, and then it felt very artificial. I had to stop. To tie all this up with a pink bow would be great. I just can’t do it though. The whole point of this blog is to validate the existence of my daughter, and in part, express how deeply I feel her loss. Maybe there is no need to end on a positive note. Today is Pregnancy and Infant Loss Remembrance  Day. I lost my daughter when she was a week old to a spontaneous genetic mutation that occurred when one letter changed on one nucleotide base in her DNA-such a microscopic event that ended up being a tsunami when it broke on the shores of our lives, and left us ruined, struggling to put ourselves back together in the wake of its devastation. Elise was with us for only one week, but there is not one day that goes by that I don’t think of her, not one day where I don’t tell my son as I kiss him goodnight that he can always call on his baby angel Elise to help him if he feels scared.  She is always with us, a forever member of our little family.