Yesterday I was sharing my story on www.facesofloss.com where parents share their stories of losing their child and share resources and blogs. Under each parent's picture above the story they submitted, they are labeled "Face of___________", the blank could be filled in NICU death like me, or SIDS, miscarriage,etc. Each person can choose the wording of their picture's caption and some chose the terms NICU "death" or Neonatal "death". I KNOW they ARE actually deaths and their babies died, but those "D Words" always seem so rigid and cold.
Soon after we lost Trey, (notice I didn't say "Trey died") I had to get out into the world to go to various doctor's appointments and such. People who knew me would ask about the baby and I would lower my head and say "he's dead" or "he died" with slight annoyance and a whole lot of crassness. I then would offer no more conversation, leaving them stunned and aghast. People were only asking because they knew I was pregnant and no one expects to hear that someone's baby went to Heaven (notice I did not say "the death of a baby"). The wounds of grief were so fresh and wide open that I wasn't quite prepared to be forthcoming to every Tom, Dick, and Harry about my loss (notice I did not say "my baby dying") and I DEFINITELY was not prepared for their horrified yet embarrassed reaction when they learned of Trey going to Heaven. Their immediate sympathy put an anvil of emotional weight on my already heavily burdened shoulders and heart.
The doctor's I saw regarding fertility and Trey's CHARGE and fight for life called his passing an "event", like it was the Super Bowl or something. When I had my six week check-up, the nurse asked me if I was breast or bottle feeding, once again the d word came up but only because I was INCREDIBLY annoyed that this staff had NO knowledge of our loss and the doctors in charge of my care during my pregnancy had obviously not informed the staff leading to this nurse's question. When I went back into the room after giving a urine sample, my medical file was wide open on the counter with a read piece of paper on top of it that read "BABY DEMISE". I wanted to scream and throw the folder across the room. The OBGYN office that I went to for my pregnancy with Lorelei had entered the terms "Poor Obstetrics" which I eventually had to ask what it meant and why is it written in my record if not every doctor is going to take note of it, leading to the uncomfortable questions followed by the same horrified/embarrassed reaction that I have become accustomed to.
I guess almost three years later, with a little healing under my belt, I am no longer annoyed when someone asks me questions regarding Trey, my icy responses have softened and I use terms like "passed away", "gone to Heaven", "we lost Trey" or "became an Angel". I rarely use the "d words" to describe my son's fate, I might use them in reference to losing a child in general. When I am communicating with other Angel Mommies, I RARELY use the dreaded "d words".
I started using these more gentle terms as to soften the blow of my listener and when they say "I am so sorry", I respond, "It's ok, it's our reality, he's our Guardian Angel". They might leave the conversation embarrassed and engulfed in sympathy, but at least I put up a strong front and made an attempt at making them feel better about accidentally and unknowingly putting their proverbial foot in their mouth. These terms also comfort me as the "d words" have a cold connotation for me, although they flow freely in moments of extreme emotionality, I am sure because I need to hear their harshness to let grief flow through me more freely. Of course sometimes in these fits of emotions, I find myself angry amongst my tears and those words represent all that is cold and bitter about grieving.
I wish there were a better way to say neonatal "death" or NICU "death", but until that day, we'll have to come to terms with the terms I call the "d words" just like we have become to terms with our grief daily.
Soon after we lost Trey, (notice I didn't say "Trey died") I had to get out into the world to go to various doctor's appointments and such. People who knew me would ask about the baby and I would lower my head and say "he's dead" or "he died" with slight annoyance and a whole lot of crassness. I then would offer no more conversation, leaving them stunned and aghast. People were only asking because they knew I was pregnant and no one expects to hear that someone's baby went to Heaven (notice I did not say "the death of a baby"). The wounds of grief were so fresh and wide open that I wasn't quite prepared to be forthcoming to every Tom, Dick, and Harry about my loss (notice I did not say "my baby dying") and I DEFINITELY was not prepared for their horrified yet embarrassed reaction when they learned of Trey going to Heaven. Their immediate sympathy put an anvil of emotional weight on my already heavily burdened shoulders and heart.
The doctor's I saw regarding fertility and Trey's CHARGE and fight for life called his passing an "event", like it was the Super Bowl or something. When I had my six week check-up, the nurse asked me if I was breast or bottle feeding, once again the d word came up but only because I was INCREDIBLY annoyed that this staff had NO knowledge of our loss and the doctors in charge of my care during my pregnancy had obviously not informed the staff leading to this nurse's question. When I went back into the room after giving a urine sample, my medical file was wide open on the counter with a read piece of paper on top of it that read "BABY DEMISE". I wanted to scream and throw the folder across the room. The OBGYN office that I went to for my pregnancy with Lorelei had entered the terms "Poor Obstetrics" which I eventually had to ask what it meant and why is it written in my record if not every doctor is going to take note of it, leading to the uncomfortable questions followed by the same horrified/embarrassed reaction that I have become accustomed to.
I guess almost three years later, with a little healing under my belt, I am no longer annoyed when someone asks me questions regarding Trey, my icy responses have softened and I use terms like "passed away", "gone to Heaven", "we lost Trey" or "became an Angel". I rarely use the "d words" to describe my son's fate, I might use them in reference to losing a child in general. When I am communicating with other Angel Mommies, I RARELY use the dreaded "d words".
I started using these more gentle terms as to soften the blow of my listener and when they say "I am so sorry", I respond, "It's ok, it's our reality, he's our Guardian Angel". They might leave the conversation embarrassed and engulfed in sympathy, but at least I put up a strong front and made an attempt at making them feel better about accidentally and unknowingly putting their proverbial foot in their mouth. These terms also comfort me as the "d words" have a cold connotation for me, although they flow freely in moments of extreme emotionality, I am sure because I need to hear their harshness to let grief flow through me more freely. Of course sometimes in these fits of emotions, I find myself angry amongst my tears and those words represent all that is cold and bitter about grieving.
I wish there were a better way to say neonatal "death" or NICU "death", but until that day, we'll have to come to terms with the terms I call the "d words" just like we have become to terms with our grief daily.
The only term I don't like is "born sleeping." My son wasn't born sleeping, to be sleeping you have to be breathing,,, and he wasn't.
ReplyDeleteI prefer to use the term born still which I believe is a much more accurate description of what happened.
I don't mind the "d" words, but in practice I don't use them very often. I think like you, it is to shield the listener or reader from the shock of it all.
I hate the term born sleeping. I wish my daughter was born sleeping, instead of dead. Seriously.
ReplyDeleteAnd as for the D word....I try not to use it all that often. I usually say that I "lost Isla at38 weeks" when asked.
I commented here yesterday...but it never showed up!