Only a handful of people will ever fully understand any of the feelings involved in Charlie’s birth. That is why I became so annoyed with this article that repeatedly appeared in my social media feeds today.
Numerous moms lauded it and responded with proclamations of sisterhood. However, not one of my friends that have lost a child praised it. Nor, did I see any of my fellow micro preemie moms passing it on.
The thing is, unless you are a micro preemie mom, you can’t possibly understand what I’ve been through. Even then, our experiences may be vastly different. Similarly, I can’t pretend to understand what my friends who have lost a child have experienced.
Yes, you may be able to imagine a bit of the fear that I felt when Charlie made her early arrival weighing in at 790g. But, you can’t ever imagine what it was like for me to sit beside her isolette in silence for days, unable to touch her or hold her. I maintained the vigil simply because I did not want her to die alone.
You can’t imagine the loneliness I felt when people constructed excuses not to visit me and my baby because it was too hard or uncomfortable. You can’t imagine the powerlessness I felt as I pled for my newborn’s life. You can’t imagine the heartbreak, the anger, the fear, the jealousy, the envy, and the profound sadness I felt during her NICU stay. Each day, I woke up and whispered to myself, “Please, don’t let anything bad happen today. Please, don’t let my baby die today.”
Eventually, she did come home but it was not over.
There was more heartbreak and sadness that came with diagnoses and countless unknowns. Every little milestone was and is celebrated like a hard won victory. Because, that’s what they are.
Most importantly, there are the bits that most likely didn’t cross your mind. My relationships with friends and family have changed. Some for the better while others were broken or abandoned. The stress rocks a marriage. I feel disconnected from a lot of the world around me. I no longer relate to most of my peers.
While I’ve come out of it stronger, more resilient, wiser, and braver, part of me is wounded. I lost my sense of safety. I fight through anxiety every single day. I am haunted by guilt. Periodically, I mourn the loss of my birth story, the loss of my child’s babyhood, and the loss of the imagined life we were supposed to have. I will never be the same.
Each time I see the article pop up in my feed, it’s a slap in the face. It minimizes my feelings and is dismissive of my trauma. Instead, the article shows me how little you do understand. I don’t care that you are a mom. You can not possibly know. You are not supposed to know.
Something horrible happened to me and some of my friends. There are some things so horrible that you can’t understand unless you experience them first hand.
For your sake, I hope you don’t… because you’re a mom.
Cheering on Charlie 
February 4th, 2015 at 9:44 PM
Rebecca…this brought back a memory of mine that I try to not to remember. A friend of mine, actually my best friend, was concerned that I was too “focused” on prematurity (this was when Jack was still under age 2) and that she didn’t want me to have to make new friends because of our experience. She said, “All parents worry that their child will die.” My heart broke just a little more when she said this, because I knew for sure in that moment that she really had NO idea what we had been through (and I was at a point of desperation, hoping for someone to just understand…to really get it). Especially now that I have a rather healthy 2nd child, I can say without a doubt that I rarely have worries like that about her. Simply because that was all I ever worried about for Jack during his first 112 days in the hospital and the many days after. He faced death. I faced death. Yes, we both survived, but I can’t forget his rough, life-threatening start or mine (of mommyhood). There is a HUGE difference in worrying about something that could happen and actually experiencing the very real possibility that it could at any moment…especially at the point when life is just beginning. I mean, we had to have a conversation about whether or not both of our lives could be saved before my emergency c-section. (And I feel another blog post coming on….). Thanks for tackling this subject.
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February 4th, 2015 at 9:49 PM
Write away, I’d love to read your thoughts. This article really bothered me. I’m glad I’m not the only one.
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February 4th, 2015 at 10:18 PM
Beautifully written Rebecca. I like that she says we should support all moms no matter the circumstances. Because that I agree with. The rest of it rubs me the wrong way too.
Heather, reading your comment makes me angry. I have been there, in that moment when a friend or loved one says something that makes you realize with utmost confidence that s/he has absolutely no idea what we have been through or are going through. It’s infuriating, heartbreaking, disappointing and reminds you once again how lonely the life of parent of a complex needs kid is.
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February 4th, 2015 at 10:22 PM
I’m all about supporting each other. However, to say “I understand” that’s the part that aggravates me. P, it is an isolating experience. Thankfully, we have each other.
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February 5th, 2015 at 6:07 AM
Thank you for this post. I am the mom of a 23 weeker, and the article also rubbed me the wrong way and I wondered if it was just me. Other moms who haven’t suffered can never “know” how it is. This goes with any sort of suffering…childhood cancer, preemies, birth defects, miscarriages, death, etc. Other moms can feel sorry and have empathy for those who suffer, but you never know how it is until you go thru it yourself. Your last line was perfect. I hope they never find out, because they are mothers.
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February 5th, 2015 at 10:43 AM
The thing is, if the author of that piece had just not started with babyloss, then it would have been an innocuous and fairly unobjectionable article. As you point out, saying “I know how you feel; I’m a mom” to a mother who has just lost her child is insensitive at best and ignorant at worst, and yet that appears to be what a babyloss mom encouraged the author to say. So I can’t critique her too much, as her only frame of reference for loss is that one mother, who encouraged her to empathize with her and say she “gets it.” I just hope she doesn’t say it to anyone else.
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