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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 > Family support

My son and daughter in law are 31 weeks along with their baby who has CDH and heart problems and will not survive long after birth, if she lives that long. We are all heartbroken. I know all of you have suffered this devastating loss also and my heart goes out to you. What advice or ideas can you give me to help love and support them and their other children - our grandchildren - as we prepare for this loss and grieve in the months and years ahead?
January 11, 2017 | Unregistered CommenterC
I am so sorry your family is going through this. While we didn't know prenatally, we found out shortly after birth that our daughter had a fatal diagnosis so I can relate with anticipating the grief and death, while simultaneously already starting one phase of the grief in knowing what's to come.

My inlaws lived with us during it all, because we have two older children who needed care when we were absolutely paralyzed with grief. The biggest thing that helped was being my liaison for everything - doctor visits, visits from friends, meal deliveries, coordinating play dates for my children to still have some normalcy, keeping the household groceries stocked without asking me, getting laundry done without being asked. The key was not being asked my opinion on anything. I just didn't care. I could do nothing but grieve my daughter, but the house still needed tending, people wanted to reach out, my kids needed school and activities, and my inlaws swooped in and acted completely as us for 2 months.

Put a strong focus on comfort. A friend sent her housekeeper over without me asking and having a super clean organized house helped my sanity so much. Extended family contributed money to keep my housekeeping going for months and it's been a godsend because I definitely don't feel like wasting my energy on cleaning these days, and having a messy house adds to the sadness and anxiety. There will come a day when people aren't able to physically be with your son and daughter in law to help so having ongoing housekeeping is a huge help.

Get tons and tons of groceries, like so many that they have to store them in the garage. Knowing I don't have to think about my snacks, or what to feed my kids, for the next month or two is also a huge weight off my shoulders. Also little details like the best quality of food. It sounds silly but when you really have no appetite and just want to be done being hungry, having the expensive really delicious yogurt in my fridge or those Perfect Bars really went a long way to adding just a tiny sparkle of joy to my day where an average snack I'd normally have in the house would not.

It's so hard knowing it's on the horizon and just waiting. In fact, it's agony. I hope that your family is able to spend some precious moments with their child. Give yourselves tons of grace, do whatever it takes to get you to the next moment, and don't judge yourself on how you're reacting to the grief. It's a huge awful process that you can only take one day, one moment at a time. Keeping you all in my thoughts.
January 11, 2017 | Unregistered Commenterwicket
C,

I'm so sorry for the heartbreak you are experiencing. I did not have any prenatal diagnosis, and my loss was more of a freak accident during labor - so I don't know as much about the "waiting for death" kind of thing. I was 100% blindsided by mine. However, I definitely can offer advice on the grief part. You are already off to a supportive start by reaching out to other parents who know this pain well. I applaud you for coming here and asking us. I would like to second what wicket said about not asking opinions. I know that sounds weird, like taking for granted what someone might think, but I found it incredibly maddening when I was asked some inane opinion on something that did not matter at all to me, when my mind was solely focused on my loss. I remember being asked if I wanted the ice crushed or cubed in the water someone was bringing me, and I wanted to scream, "I don't give a damn! I want my daughter back, that's what I want!" I literally didn't have the mental capacity to even handle such a basic question.

You might find that it is really hard to feel supportive of your son and daughter-in-law, as though nothing is helping. I know this is how some of my closest supporters feel. As much as they want to help, they know their help only does so much... I still have to go through every day living with the pain of what happened (loss during labor at 41 weeks). Even when ppl explicitly ask me what they could do to help, sometimes I cannot think of what that would be... which is sad in the first place, feeling so helpless that I can think of NOTHING that would improve my situation.

A few ideas would be to check in on them often and just simply ask "How are you?" and "What are you feeling today?" Reiterate that it's incredibly unfair that they're going through this, that you are sad for them and that they did not deserve this pain. I recommend NOT trying to talk them out of their feelings, offering a positive spin on anything, or trying to really "fix" things. Just listen. For me, when ppl tried to relate with other very sad stories, I actually felt a little less alone, if the story was indeed really, really sad (for me, a pet loss, for instance, does not count... I also felt misunderstood when my story was compared to an early loss). But when I heard of other women who lost children around the same time in pregnancy or shortly afterward, I actually found comfort in that, b/c I felt so alone otherwise.

For many months after my loss, I did not want to really go anywhere or do anything. But maybe six or so months afterward, I started being able to enjoy things like going to the movies, going on a weekend trip somewhere, doing a little shopping, etc. Maybe you could get them a gift card for an outing or a date night when the time feels right. (Again, I would have felt very uninterested in such an idea for a long time.)

You could get them books... I 100% recommend When Bad Things Happen to Good People. You are the Mother of all Mothers is also a lovely little book. Also, Healing After Loss: Daily Meditations for Working Through Grief.

I think it's important just to show them that you can handle it, that you're not scared of their pain, you're not going to run away from it or go silent, you can hear about it and talk about it, etc. When people show me that they do notice my pain and they do care and want to help, even if I don't know specifically what to ask them to help with, I at least feel noticed and less ostracized and left out of normal life. I have family members whom I am SURE are heartbroken for me and wish they could help my pain... but they're not really communicating that or reaching out to me in any way. I encourage you to vocalize it, to say the baby's name often, to make it known loud and clear that this child existed and mattered and will always be loved. People even in my own family can be so scared of hurting me or of saying the wrong thing, that they end up saying little to nothing - which hurts even more.

Also, I don't really like it when people ask me about if I'm trying again, am seeing a counselor/taking meds, have any appointments with new doctors, etc. I feel like those are pretty invasive questions and aren't really anybody's business, and they also feel like ppl trying to offer me simple solutions to a very complicated problem. I can feel like my grief is highly misunderstood when I describe any element of my pain and am then asked "Are you trying again?" as though it's just so easy to do, or somehow helps the current loss.

Best of luck to you and your sweet family while you navigate this incredibly difficult path. There are no shortcuts. Plain and simple, it's brutal. Sending you my love.
January 12, 2017 | Unregistered CommenterNM
I thought of one more way to support... I have one friend who has really, really given it her all to understand how I am feeling. She cannot relate personally; in fact, she had her own live, healthy child mere weeks after mine died. However, she has made it clear that she will not forget mine, ever. She is so interested in what this experience is like for me, that she follows the same Instagram accounts and blogs that I do... e.g., loss moms, grief blogs, and she talks to me about them. If I mention a book I found helpful, she reads it too. It really helps me feel more understood.
January 12, 2017 | Unregistered CommenterNM
Thank you for your suggestions. I have already started doing some of the things you both mentioned and appreciate your insight. I am so sorry for your losses. Hugs and prayers.
January 28, 2017 | Unregistered CommenterC
Some important things that may not be available in some hospitals are photographers to document as much of the baby as possible, especially if the end is expected fairly quickly. Believe me, as many pictures as possible! There are some very good photographers who do specifically that...here is one such organization: https://www.nowilaymedowntosleep.org/

There are others that make beautiful gowns and suits out of wedding dresses, that you can just google Angel Gowns and many different kind hearted people will come up.

I am three months into the grief process, and everyone has pretty much just fallen by the wayside, despite the fact that when I DO talk to someone, they invariably say, "I think of you every day". It is so important to maintain contact as the parents wade through their grief, knowing that someone is still thinking of them, even if it's just to sit quietly. But it will make it easier years down the road if there is tangible evidence of their child...pictures, video, etc.

Hope this is of some help.
March 27, 2017 | Unregistered CommenterPaula