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Mourning a Loss That Doesn’t Quite Have a Name

9/13/2015

 
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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. 

Holly Hicks-Guski
9/16/2015 04:34:51 pm

Dear Nicole,
First off I want to send our sincere condolences to you and your family for the loss of your beautiful baby girl. I know first hand that their are no words I can tell you that will make you feel any better. Because I too am a mother who lost our daughter at 39 weeks pregnant as well. Because she so sadly was Still Born at birth. Due to knotting her umbilical cord with 3 very tight knots and having it wrapped around her feet like a figure eight. I know every single emotion and feeling you feel everyday. I am writing because I want to Thank you for sharing your story and writing your beautiful post about your daughter. I too am a greif survivor. But I will never be fully healed. The pain of losing our daughter had eased some in the last 7yrs. But the longing to be with her and the constant wondering what it would be like with her here and what she would look like and things she would like to do, and if she would have bleach blonde hair like her brothers and big blue eyes and long eye lashes like her 4 brothers, or hazel eyes like my husband and I, and many more questions and wonders will ALWAYS be in my mind and heart. I love your entire post. And everything you wrote truly hits home. We get asked all the time when we are out with our 4 boys "Boy you must still be trying hard for that girl hey!" Or "Are you gonna keep trying for a girl!" And in the beginning it bothered me so much that I was stuck in Such a dark depression that I didn't even want to leave the house. But now If someone says something I just politely say "No, we actually have a daughter as well. But she is our guardian angel. We are blessed with 4 beautiful boys here on earth. And we do have a daughter. And just because you can't see her doesn't mean she doesn't exist to us. Elleann Louise was sadly still born at 39 weeks pregnant." And then I just let the conversation go from there. Some people will apologize and be kind and others don't know what to say. But I felt for me and my healing that I didn't want to keep her name quiet and act like she didn't exist. Because even though she isn't here with us on earth. I still carried her inside me for 9 months. And planned and prepared everything for her to come home to. And We had so many dreams and visions of things we wanted to do with her. But sadly we only got to hold her beautiful body in our arms for a couple hours and had to say "Hello & Goodbye" to our precious daughter we wanted so badly. Please don't be shy to keep your daughters spirit alive! So what you feel is right for you. Everyone deals with death in their own way. But we have a right to keep our child's memory alive if we choose. And we choose too. Because even though she was taken from us way to soon. She still had a heartbeat for 9 months, and I felt every kick and hiccup and jab in my ribs, and she was still born and"Elleann Louise" is and always will be our daughter! God bless you hunny. And please know that you are always in our thoughts and prayers.


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    • Contact
  • GET INVOLVED
    • Start a Fundraiser
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