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Parents of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged and understood.

Thanks to photographer Xin Li and to artist Stephanie Sicore for their respective illustrations and photos.

for one and all > Advice for dealing with the 'non-acknowledgment' people

I recently had an unexpected run-in with an acquaintance. I'm just shy of hitting 3 months since our son, Carter, died. The other day I met a friend for an early lunch. It really was one of the first times I ventured into public and I was somewhat anxious about it all. It started off poorly because within 10 minutes of sitting down a woman with her newborn walked in and sat behind us and then a woman who was well into her third trimester sat at the table next to us. I was cursing the universe. I probably should have been gentle with myself and told my friend I needed to leave, but I stayed.

Before I even realized what was happening I noticed a woman out of the corner of my eye. I recognized her immediately. She is a sales representative for the medical office I work out. She knows our story and that Carter died. What happened next shattered my already broken heart. She walks over to me with a huge smile on her face and says, “Hey, how are you? You live around here” I think I muttered something along the lines of “I’m hanging in there; yes I live here”. She then proceeded to say “good to see you” and left.

I couldn’t believe there wasn’t any mention of our loss – any acknowledgment of what I had been through and/or what I continue to go through. I wasn’t expecting a long drawn out conversation. She isn’t someone I would pour my heart out to. But, I did expect… I don’t know, maybe “I’m so sorry for your loss.” The whole situation really broke me. I stayed in bed the entire next day. I couldn’t face a single person.

In hindsight, I wish I would have said, “I’m struggling since Carter died.” It’s a sentence I plan to use moving forward. It encompasses how I’m doing and acknowledges my son. Maybe they are afraid to say something and this will open the door. I hate that I have to be the one to educate when I am the one grieving. My therapist says that with child loss, particularly babies and children of young ages, people just can’t let themselves go to that place. They don’t want to think about that kind of loss, feel that kind of loss, or even attempt to imagine it. My response back is, “well, I feel it every second of the day; for the rest of my life. They can empathize just for a single minute.”

I guess part of me needed to vent. Part of me is looking for advice on how to handle these situations. I return to work May 18th. I am a RN in a dermatology office. I see a lot of regular patients for monthly treatments. I had my office manager send a letter out, that I wrote, to patients explaining what happened. I didn’t want to get bombarded with questions about why I wasn’t on maternity leave (Carter came early at 33 weeks). I guess I’m worried about the insensitive platitudes that might happen or the non-acknowledgment/silence that will come from people. The silence from the sales representative killed me. I can't imagine facing that multiple times a day with each patient. How did everyone cope with situations like these? Did you speak your mind? Did you fake being okay then just crumble when you got home?

I’m so sorry all of us are on this path. I wish our babies were here with us.
May 12, 2017 | Unregistered CommenterJenna
Oh Jenna, I'm so sorry that this person was so insensitive. I agree with your therapist people don't want to go there. Sometimes, they actually think they're being nice by not bringing it up because then they won't remind you that your baby died (seriously, how the fuck could I forget that?!! You think I don't think of it SLL the time?!! But apparently people really do think that). Anyway, I think in future you can say to your friend: I need to leave or go sit somewhere else. I was once at a very nice restaurant with a friend and they seated us at first righ next to a group that had a baby girl who looked like she was about the age my daughter would have been. My friend looked straight at me and said: do you wan yo get us reseated? I said yes and it was done in less than 5 minutes...but at work or at the grocery store or whatever, I think your plan is a good one. I also agree that it's not your job to make people comfortable. Babies die, children die, it's the way it is and you shouldn't have to hide. But try to be gentle with yourself too and kind. Patient, gentle, kind, and loving. Sending you lots of all four.
May 12, 2017 | Unregistered CommenterAB
Jenna I can so relate and im sorry you had to go through that. Some of my closest friends have reacted the same way, they just dont acknowledge what has happened anymore and it hurts I feel like shouting at them its only been 2 months its okay to ask me or talk about my baby. Then there are some that will so flippantly say to me " I cant imagine". It makes me so angry its so half hearted, insincere, what I want to say is please try to imagine because I am going through this and it can happen! I totally get your frustration and pain, your therapist is correct, people simply do not want to allow themselves to think about it and thats very hurtful for us. Like you I find myself bottling things up for the sake of protecting people from it but I think going forward I will be more honest and let them deal with it, grief is hard enough.
May 13, 2017 | Unregistered CommenterRA
Wow that must have been hard. I'm 11 months out and I still would have either needed to leave or ask to be reseated from a newborn/third tri adjacent seating situation.

I also agree that the "I just can't imagine" comments are crazy making. Just try. I know it's horrible but just try. They are basically saying "this is too unpleasant to do for pretend for a few moments" while we are over here doing it for real all the time. The least they could do is be willing to mentally go there for a few minutes. I've found that the once who do try to imagine are the ones I can rely on for support.
May 13, 2017 | Unregistered CommenterMom2htb
Jenna, I am so sorry for the stress you're having to navigate in "normal" life now! Incredibly ordinary moments and encounters are now grief landmines. As far as the woman who did not acknowledge your pain or Carter's life and death, unfortunately in my experience that is far more the norm than those who do acknowledge it. I've come to believe two main things about humans' responses to tragedies:
1. We're all selfish. No one is going to mourn my daughter as hard as I am. No one. Ever. Likewise, I cannot possibly get as sad or depressed over another person's tragedy as that person is for his/her own loss, or as I am about my own.
2. People are taking their cues from us. They're relying on us to give them signs or hints as to whether or not it's a good time to speak of our children. This concept does make me mad, as I don't feel that educating others should be on my to-do list along with grieving and mourning and surviving. Then, at other times, I realize that I am not personally consistent in when and how I want people to mention it anyway. I actually do have times when I would rather the conversation stay very surface-level, because I know I will fall apart if we dig any deeper. However, most of the time I would really appreciate it if there were an acknowledgement of what I am going through.

As many have said above, most ppl cannot actually fathom what this reality is like. It's easier for them not to, but also - they simply CAN'T. Try as hard as they may, it would be unfathomable to truly grasp until you're the one being told your child's heartbeat cannot be found. I don't find that much comfort when people try to imagine, because I know they can't anyway. Their attempts are, by necessity, not good or close enough to what it's really like. When I want someone to empathize, I turn to Glow or to other loss mothers I've become friends with in real life. I know they get it. I do wish the general population, though, would be ballsy enough to acknowledge the fact that life is hard and shitty and doesn't always have a positive spin on it.

But back to the people who don't acknowledge... It's mostly for their own lack of comfort or certainty with how to handle it. I don't think that excuses the lack of acknowledgement whatsoever, only explains it. What really gets to me is not so much if someone doesn't bring up my grief right away, but when I DO mention that I'm struggling and the person STILL can't go there, when I'm giving every clue in the world that I am (1) NOT feeling well, (2) bringing up the topic myself and would rather talk about it than ignore it. Just this week, I gave honest answers to "How are you?" and was once told that my emotions probably had to do with the weather (no, actually, my daughter is still dead), and then another person actually told me that I did NOT feel the way I just said. I answered the question unenthusiastically, like "Mehhh... hanging in there, I guess" and the person reacted by saying, "Noooo! You're always so great!" :-| He seemed to have no idea what I would possibly be referring to via my negativity. All I could do was an internal eye roll with a mental note to never attempt the honest route with this person again. I've also had conversations where I've said I wasn't doing well and the person has said something like, "Glad to hear you're getting a little better each day" - which was not only not at ALL what I just said, but also is not even true and dismisses my actual, real pain. Sometimes for me my best route is to be pretty freaking quiet and withdrawn and inward most of the day and not deal with people that much at all in the first place. It's lonely and isolating, yes, but I have a LOT of trouble handling others' lack of acknowledgement.

I guess that leads me to my next stance on all of this... I "go there" with the people I trust. I answer "How are you?" honestly to the people I know can handle the true answer. To the people who are less adept at handling my sadness, I don't give them much. I either dodge the question, or I say "Fine" and move on, or I avoid the person altogether (assuming he/she hasn't already avoided me first, which is very possible). There are SO MANY people who have never acknowledged that my daughter died. If they are so uncomfortable with it or with me, I don't really want to talk to them anyway. I generally don't bring it up out of nowhere to people who've shown zero interest or concern before. To people I feel I can trust, I might.

"Did you fake being okay and then just crumble when you got home?" -- Yes, on a nearly daily basis. It's hard to know what to do, you know? I fear that if I don't fake it - i.e., if I essentially let anyone and everyone know, at all times, that I am so sad - there will be no one who will want to be around me anymore and ppl will likely avoid me even more than I already feel they do. I've also begun to feel like for those who have a history of ignoring my sad truth, I no longer care what they think or know anyway. I feel like they're a lost cause in terms of being a support or a comrade in grief in any way. So while they do not acknowledge my daughter or my grief, I don't want to share those parts of myself with them that much anymore anyway. It almost feels like they don't deserve it. And meanwhile they'd probably be glad and relieved to be off the hook anyway... so, there you go.

I'm sorry this is all so complicated. The whole situation really sucks so, so, so much. Thinking about you, Jenna and everyone else, as Mother's Day rears its cruel head upon us this weekend as well.

xoxo
May 13, 2017 | Unregistered CommenterCameron
It is all so awful and fraught with difficult conversations. Our daughter Eleanor died shortly after she was born six months ago and I went back to work early about 5 weeks after Eleanor's birth. I am self employed in healthcare and I worded out a letter to explain in outline what had happened. Actually patients and patients parents where almost all lovely. We had tears in the surgery and many many sent cards or flowers. I also had two or three wonderful and touching letters sharing their experiences of newborn loss. A father of a patient said to me that he and his wife lost their third child at birth also and he still felt his daughter's loss every day - it was very touching and I was honoured he shared this with me. However there have also been patients who have moaned about my maternity leave! Moaned about my cancelling patients for the inquest into Eleanor's death - it is quite amazing!
I am by no means saying it is or will be easy - I still meet many people socially that never acknowledge her birth and death and every day I wish that she was here and I could just say - yes I have a beautiful six month old daughter and she's doing really well. I have had to go to the toilet and cry on numerous occasions at work - particularly with patients with very young children.
We can all only try and keep going and grieve in our own way.
Sending my love
May 13, 2017 | Unregistered CommenterKE
Thanks you ladies for all your comments. It's so comforting to know I'm not alone on this path.

AB, I couldn't agree more. How could I ever forget that my child died... really? Is it ignorance, insensitivities, or flat out stupidity? I know most people try, but please try harder. Please just sit with my grief and pain for just a second out of your day. I think next time I'll ask to be seated elsewhere or just leave the restaurant. Wishing you gentlessneas and peace on your journey as well. Thinking of your sweet daughter.

RA, 2 months is so fresh. I am so sorry you are on this journey. You should still be receiving all the support and comfort from your friends. They should be acknowledging your child. But, sadly I agree as time goes on the support starts to tapper off. Which I think it's when we needed it most because it's at this time the shock has worn off. I agree, moving forward I'll say what I need to say to help with my grief. Wishing you peace and sending lots of love your way.

Mom2htb, what you said is so true, "I've found that the ones who do try to imagine are the ones I can rely on for support." They won't ever come close to understanding but those are the people who are going to be supportive and understanding in this long journey. Sadly, that number isn't as high as I would have hoped. But on the flip side - I know who counts in my life. Wishing you a gentle congratulations on your pregnancy. I follow the other boards (as we will be trying again soon) and find comfort in the strength that is given to all the women in subsequent pregnancies.

Cameron, so much of what you said resonates with me. I want the general public to recognize life doesn't always work out. And sometimes it just fucking sucks. And like you said, not put a positive spin on it. I can't believe when you experienced with those conversations. Dropping clues that you are, in fact, not okay and then to have your response just be dismissed or not heard. The weather, really?! I feel as I enter work this week that I may be faced with these situations. But, like you said those people shouldn't be the ones I expend my energy on. We should only open our hearts and our grief to people who deserve it. I'm so sorry you find yourself on this journey. Thinking of you and your precious daughter.

KE, sometimes people surprise you. With the letter I sent out notfying patients of our loss, I received a lot of cards and messages. People sharing in my grief and truly heartbroken. So I do take comfort in that. It's the other side that causes me pain - the non-acknowledgment or insensitive comments. I can't believe you had patients that moaned about your maternity leave... really?! I'm not sure I would have been able to hold back with them. I hope you fired them as patients and never have to see them again. It's such a difficult road we have to follow. I imagine there will be a lot of crying breaks in the restroom. Sending lots of love your way and thinking of your sweet Eleanor.
May 16, 2017 | Unregistered CommenterJenna
Jennings I am feeling your pain, My husband and I lost our sweet baby boy Prince Isaiah 4 months ago and my pain and grief is still unbearable. He was 2 months old. Our family is devastated as I have 3 other boys 22,16,12. It's very hard to deal with the non-acknowledgement from some family and friends that really upset me!!! I understand that they don't have words but silence hurts even more. But I do have several options for you to help with the acknowledgement. Our immediate family (husband and kids) we all wear our heart necklaces that were given to us at the NICU. It's a ceramic heart and it gets lots of questions or someone will comment on how cute it is and that will giveme a chance to say IT BELONGS TO MY SON PRINCE ISAIAH WHO PASSED AWAY. If you don't have that you can always get a personalized necklace made. Also we ordered REMINDERBANDS. The rubber made bracelet (the kind they have for cancer or wwjd) we have 3 different kind all personalized with his name on them, they have so many to choose from!! Different colors, symbols, key chains you just gotta check it out. They definitely get attention and another great way to acknowledge your little Angel. I'm not sure if you have any pictures or any keepsakes. But we display Prince Isaiah's pictures on the wall and in photo albums in our home so they have no choice but to see him and acknowledge him. He is OUR SON. NOT WAS OUR SON!!!! Dammit and people better know it. Oh yeah we got t shirts made a well. I hope some of my ideas help other mother's and families with acknowledgement of their sweet Angels. Be Blessed, from a mother feeling your pain!!
Jenna sorry for the incorrect name spelling, dang on spell check lol