Curated Grief

By | 2018-01-11T18:10:48+00:00 January 11th, 2018|Emotional Health|0 Comments
Curated Grief

Photo by Antenna on Unsplash

While pregnancy and infant loss is still considered a taboo topic in many situations, there has been a lot of work done to bring awareness and empathy. There are people writing books, making art, and sharing stories about their children and their grief. This is a very good thing.

Like almost everything in our lives, social media and the internet in general have changed the ways many of us express our grief. It gives us a platform to talk about our babies, it helps us connect with other loss and PAL families, and there is more content available than ever before to help us on the grief journey.

Yet, I sometimes worry that with all the awareness and story sharing, people who haven’t been through pregnancy or infant loss might think they “get it.” If you’re reading this article and you haven’t lost a child…you will never get it. This is not any shortcoming on your part, it’s just the way it is. There is no way to understand the depth and breadth of losing a child unless you are going through it. No matter how many testimonials you read, how empathetic you are, or how much you try to understand, it’s just not possible.

Because the storytelling, the blogs, the social media posts, the memorials, the remembrance items…it’s all curated. It’s all specifically chosen to put forward, what we’re willing to share. Sometimes we are vulnerable and share deep-seated emotions and thoughts, but not always. We edit, we filter, we frame and reframe. We add conclusions and introductions.

It’s hard to even talk about the really rough stuff in a support group or with close family – let alone share it in a public forum. The only person who has heard me cry, really cry, is my husband. And he hasn’t been around for every bout of it. He hasn’t been home when I’m alone and fall to pieces, or in a bathroom stall trying to collect myself. I share a lot with him, but there are still thoughts that cross my mind that I don’t think I’ll ever say out loud.

Now I’m talking to the loss families out there – you are not alone. Your grief doesn’t have to – shouldn’t – look like anyone else’s. You don’t have to present an inspiring picture of strength and persevering all the time. Your posts and stories don’t need beautiful analogies, frames, or lessons. Photos of your child do not need to be filtered. I hope you post what lightens your load – whether sharing something you think may help others or simply expressing your feelings in the moment. And I hope you retreat when that’s what your heart needs.

And when you see articles that seem too shiny, or posts that seem too put together – know that it isn’t always like that. Take what helps you, leave what doesn’t, and understand that it’s only the part of grief they’ve chosen to show.

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About the Author:

Elizabeth Thoma
Elizabeth Thoma lives in the Bay Area, California, with her husband, Chris, and two cats, JJ and Pepper. She found out she was expecting their first child Mother’s Day weekend, 2014. With mild symptoms and no significant early warning signs, they adjusted to pregnancy and eagerly planned for their growing family. At the second trimester anatomy scan, they found out they were having a son and that he had an abdominal wall defect, an omphalocele. Ever the planners, Elizabeth and Chris prepared themselves and their families for what the omphalocele meant in a best-case scenario, and some of the possibilities that couldn’t be diagnosed in utero. Their son, Oberon, was born six weeks early and had his omphalocele surgery within his first twelve hours of life. The surgery went well, but Obie was having trouble breathing. At first, the doctors thought it was related to his large tongue, one of the many indicators that he had Beckwith-Wiedemann Syndrome. When Obie was one week old, the doctors told Chris and Elizabeth that somewhere along the line, Obie’s brain stopped developing. While they could control his seizures somewhat with heavy medication, Obie’s brain would never develop and he would not be able to walk, talk, or even communicate. At this point, they decided to switch Obie to comfort care and try to take him home from the NICU. They successfully broke out of the NICU and Obie rode home in an ambulance. Bringing their son home brought much comfort to their family. Obie passed away at home in his daddy’s arms at 33 days old. Elizabeth found out she was pregnant with their second child a week after Mother’s Day, 2015. Her second son, Everett, was born January 7, 2016. Elizabeth and Chris blog at about their family at Our Little Beastie.

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