This week at the kitchen table

photo by  Vazquez

photo by Vazquez

Dear Readers,

We're continuing our conversation with you this week. We really appreciate your comments, your encouragement, and your assurance. It has meant a lot to all of us to know how much and in what ways Glow has supported you in your grief, and for that, we thank all our readers. Glow is a platform for us, bereaved parents of babies, to know we're there for each other. So thank you all, for lending a hand, a shoulder, a heart.

We are holding these conversations to explore what the future holds for Glow. We want to assure you that we do not want to go anywhere or disappear from your lives. We are grateful to know that Glow has been as pivotal a presence in your lives as it has been in ours. As we wonder about the directions it will take in future, we wanted you all to be a part of that exploration.

Our conversation around the table today is about the others. They say that it takes a village to raise a child, and as bereaved parents, we all wish for our own village, to grieve our child. The online landscape must be populated with resources and refuges each of us have sought in our journey as bereaved parents. In some of these places we have tried to introduce our new selves to our old friends and acquaintances, sharing with them our new reality, our new beliefs, our new causes, our new milestones. In some other spaces, we have made new connections with those who were strangers to us before our loss, and now are our closest kin. Some of these communications have been silent, others vocal and elaborate. But each space, each strand of communication, has had its own value.

This week, we want to know about the features and strengths, or the lack thereof, of other spaces you have traveled online during your journey with grief. 

Please refrain from naming websites or blogs if you so want. We are also not expecting criticism of other websites or of others' perspectives. Instead, we would like to know about your comprehensive online experience regarding grief, and how other spaces have also accommodated your needs. It will help us know ourselves better, and take a stronger step forward. —Mrittika

Where else online have you sought resources and support in your loss? Have you shared about your loss on Facebook or Instagram? How are the other online spaces you've been a part of different from Glow? What do they give you?

Burning Eye: When Joseph first died, we immediately shared the news on Facebook. It was the easiest way to let everyone know. The response was amazing and overwhelmingly supportive. But then, as that trickled off over time, I was disappointed in Facebook. It can be such a fickle friend. I spent a lot of time looking for other spaces in my early loss, but didn't find much I latched onto, other than Glow. I think other people's loss blogs were the biggest source of support to me, some that were no longer being updated, others from the newly bereaved, like myself.

When I was pregnant with M., a new friend who was also pregnant invited me to join a private Facebook group made up of other friends of hers who were also pregnant. I had to stop visiting that group as people got closer to birth - I just couldn't handle other people's pregnancies - but that group transitioned to a parenting group once all our babies were born. There are only a couple of us who have experienced loss in that group, yet I feel supported in my parenting-after-loss there anyway, because it's a group of really honest women and I don't feel discounted for my anxieties, or like I have to hide my loss. In the past year, I've really dropped away from being online, reading other loss blogs, even reading much here in Glow's forums. It's just the space I'm in with my grief. It's gotten quieter, more internal and private.

Mrittika: I've never been much of an online person, because I have always believed that I am too personal and too honest to express my thoughts among a sea of unidentifiable people. Before Raahi died, I used to write occasional posts about parenting Aahir on Facebook. Really deep, personal, sometimes funny, sometimes introspective, posts about the experience of raising a child, often singlehandedly when Som and I were apart for graduate school. 

After Raahi died, I did not know anyone in real life around me, let alone someone who had experienced loss, so I clung onto whatever I found online. But I did not really find anything that spoke to me. Sometimes I would read an article by an author who had had a loss, at other times a media piece on loss. I wandered blindly in the woods, sometimes stumbling upon a blog, sometimes a forum. But I did not write anywhere, I could not write anything for months. I found the website of Compassionate Friends, but it was too crowded, with information, events, resources. I think I needed support more than resources at that point, and my foggy brain could not process all that information, so I moved on. I did not even know who I was anymore, so I did not know which group I belonged to, what and how to even search. I abhorred the "angel baby" websites. I felt very alone, even online. But still I looked. 

Since finding Glow in August 2013, I have not looked up anything but some blogs. I have read (and I follow) Gretchen's blog, and some other blogs written by Glow men and women. I don't comment, because, like Burning Eye, I have also gotten much quieter with my grief. I love writing for Glow, it is the only place I talk openly about grief and all the ways it has changed my life. And I read other posts quietly almost every day.

I have not even "liked" anything or "commented" on Facebook since Raahi died. I did not want to expose my grief, my ugly reality, my bitterness, on a space where only the beauty and successes of life seem to reside. Sometimes I have felt Facebook may be a good space to make people aware of loss, to make them know that the loss of a baby is a very "alive" grief, it grows everyday in place of the child. I have wondered if I can share as openly about parenting Raahi only by grieving her as I once did about parenting Aahir by raising him. But I don't think I am ready for the lack of understanding, or the passive, biased comments of a mass of people with various levels of sensitivity, awareness, and closeness to me. I am scared of the possibility of such deindividuated callousness, and the way it can hurt me. 

Maybe someday. Maybe not. I have met my closest friends on Glow that I stay in touch with in real life through talk, text, email. I don't miss my 180-odd "friends" on Facebook or making new ones on any other website. Raahi's death has changed my social and virtual landscape. I'm okay with that.

Jo-Anne: For me, the most I would share on social media is the occasional generic quotes about loss or liking and sharing articles from online baby loss magazines, projects etc. I can literally count the number of times I have posted anything personal on one hand and it would be limited to “Thinking of you” or such. I have joined one or two groups but honestly can’t say I actively participate.  

Like most loss parents, I don’t feel very comfortable sharing that part of my life with others, family and friends alike, who have either never experienced such a loss or simply don’t understand it all, the grief, the sadness, the loss.  I don’t want to put so much of myself and my heart out there when the recipients do not even recognise it.

I much rather blog on my personal blog, read other loss parents blogs and express my thoughts and feelings here on Glow. I think I am just more comfortable doing so here because I am surrounded by concurring individuals who have been down similar devastating paths. There is a quiet understanding and acceptance I have not encountered even in my day to day life outside the online world.

Glow gives me a sense of community I haven’t found elsewhere. The other forums are all valuable in their own way but I find myself returning here, to the solitude of the woods without much contemplation.

Gretchen: Beyond Glow's writing and forums, I have sought mainly child loss blogs.  There is just something about the vulnerability of raw grief poured out in a piece of writing.  It speaks to me - a thousand times more meaningfully than the loss and grief advocacy-type articles I see highlighted by search engines daily.  I also appreciate the opportunity to be in real dialogue with the bloggers I follow and with those who follow my writing.  Some of these connections, initially made via a comment on a blog post, have grown into friendships that exist well beyond the internet.  Some of them know me, my children and my grief in a much more intimate way than many in my own family.

I have never had a Facebook account.  By the time it went mainstream, I was already once-bereaved and unwilling to be part of what I perceive to be mostly staged persona, surface communication and a perpetual onslaught of pregnancy and baby announcements.

Justin: For several months after Lydie's death, my online search consisted of a mix of the sterile text phrases that could only be found paragraphs deep into an ACOG article contrasted with the unimaginable variations of emotions that can come with grief. Stillbirth, umbilical cord constriction, bereaved father, infant loss, life after losing a child, books, music and poetry about grief. Reading through the stack of medical essays, I attempted to fill the need of understanding the exact science of what happened. However, I was always left empty by the information, the only feelings left lurking were the guilt and fear of discovering a preventable condition – the what if’s pounding against the walls of my mind. With each new article, the hopeless truth of this exhaustive data collection process grew louder and louder - none of this will bring her back. However, hidden deep within these search results were the blogs of other bereaved parents and Glow Emeritus contributors. And even though their words won’t change the same hopeless truth, the stories and emotions they share are a tremendous support. As many readers and writers have stated, these blogs along with the collections at Glow provide a comfort that I haven’t found anywhere else among this excruciatingly uncomfortable life.

Surprisingly, I would say that I visit social media more now than I did before Lydie died. (I should issue the disclaimer that my previous online activity was nearly non-existent.) There is an active and supportive community on Instagram. The format is different and more condensed than a long form blog, but I find I like the journal-style captions along with the opportunity to practice an outlet that I have found in photography. Like so many others, my Facebook feed has been pruned to display only those online grief communities, research and medical campaigns and babylost companions that I have found. I wake up in the morning to see if my phone has downloaded the few (two, to be exact) weekly grief-centric podcasts that I have discovered. The topics and conversations on these Facebook communities and podcasts can be basic and leave me wanting, although I understand their desire to appeal to as many bereft people as possible.

Julia: At first, I hung around some of the infertility blogs I knew from before A died. A couple of months later I started my own blog. Without any kind of exaggeration, that blog and the blogs of other bereaved parents became my lifeline. I remember being in a park in the Old City four months out and reading and commenting on the blogs on my phone. International data rates applied. 

I didn't join Facebook until about two years ago. I'd resisted for the longest time partially because I was wary of seeing and being expected to respond to empty sentiments from those who have the luxury to not examine such sentiments. A berieved parent friend who's been on FB a lot longer invited me to a private group of mostly bereaved parents. I knew a few, but not most other people already in the group when I first joined. I didn't necessarily expect it to, but the group has become important to me. I think that's because it flips the unfriendly parts of FB right on their heads-- it's more than ok to post about being blindsided by something in real life or elsewhere on FB, or to talk about how hard the day you are having, whether it is because a grief date is coming up or for no discernable reason at all, and it is also ok to say that you are proud of surviving a baby shower or a school event. And whatever you say, you can expect support. Expecting to be understood helps a lot.

I have even ventured into talking about grief on the open planes of FB a time or three. Sometimes it is to challenge one of those vapid little sentiments, sometimes to offer support. This year I even wrote a semi-public post on A's birthday. I was torn about it, but I am glad I did it. One of the things I think I can do at this point in my grief is put a face on the kind of grief that people rarely talk about. As the saying goes, out of sight, out of mind, and I don't want our kind of pain to be out of mind. I'll never know, but maybe someone who reads my words on FB will someday be kinder to a friend or relative than they otherwise would be. People who are not thinking about grief don't stumble onto Glow, but they might stumble on what I say on FB. 

Readers, pull up a chair... Where else online have you sought resources and support in your loss? Have you shared about your loss on Facebook or Instagram? How are the other online spaces you've been a part of different from Glow? What do they give you?