Mourning a Loss That Doesn’t Quite Have a Name

A wife that loses a husband is called a widow. A husband that loses a wife is called a widower. A child that loses its parents is called an orphan. There is no word for a parent that loses a child. That’s how awful it is. 

I can think of a few words to describe losing a child: devastating, broken, empty, crushed – but these words don’t even sum it up in totality. There is no one single word in the English language that can truly encompass a loss of such magnitude.

I lost my daughter, Nevaeh nine years ago. She was born 10 weeks early with several complications.  She passed away in the NICU six weeks later. Her death left a void in me that can never be repaired. It left an emptiness that never goes away.  There were days I felt like I was going to drown in the darkness of grief. But eventually, I floated to the top. I am a grief survivor.

As with grief and loss in the case of the death of a loved one, NICU parents are often expected not to speak of their grief. Death is hard to talk about no matter what, but it makes it even harder when a baby is involved. I found most people very uncomfortable when I brought up my daughter. They didn’t know what to say. A lot of people didn’t dare ask me about her life, or how I was coping after she died. I think they were afraid to bring the subject up, in fear of stirring up emotions. What they didn’t realize is that the emotions were already there no matter what.

I wanted to talk about my daughter. I was so afraid that if I didn’t, she would be forgotten. I wanted people to know she had existed, that her life here on Earth – no matter how brief – mattered. I wanted people to acknowledge I was a mom – even if I didn’t have a baby to show for it. I’d meet people and they would ask if I had any children. Do you know how awful it is to have to sit and pause and think about how to answer that question? Because if you answer it truthfully, that yes – you have one daughter, but she is in Heaven now – people get uncomfortable and don’t know how to react. But if you simply say no – you feel like crap because you feel like your not acknowledging your child.

Just when I thought I was getting a handle on grief, my daughter’s first birthday approached, and I was filled with vivid memories of her birth and short life. It brought all the feelings of loss, anxiety, panic and devastation all over again. Nine years later, I still cry on her birthday and the date of her death.  I think some people still have a hard time understanding the emotions that her birthday and day she died brings.

Grief is an awful thing. It is so hard to understand, and part of the reason is we all grieve differently. There are the five stages of grief: denial, anger, bargaining, depression and acceptance. I went through every one of them.  

I like to sum up grief like this: Grief is like getting a bad cut on your arm. At first the cut is really bad and deep and raw. But after time, it starts to heal. It never really goes away, and your arm is never really ever the same. And sometimes you look down at your arm, and see the scar, and the memories of how you got it flood back. That is grief in a nutshell. It does get better, but it never goes away.  I know that I will never be the same, I am forever changed.  I am a grief survivor.

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Nicole Onesti is a Project Coordinator for Project Sweet Peas division Nevaeh's Rainbow. 

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