Recently a few of the regular contributors at Glow have been talking about those other babylost parents we encountered in the weeks after our losses. Family members, strangers at a yard sale, coworkers, babylost parents at support groups and online. We are writing and talking about the ways we have connected with others who have experienced babyloss. We're reflecting on how other people who have lost babies have helped and supported us, even when their losses have been under such different circumstances than our own. There has been something crucially important to us in connecting to other babylost parents, in person or online.
1. We know that sometimes families talk less and less about pregnancy or infant loss as time goes on. What, if any, other losses in your family were revealed to you after your loss? What was it like to hear about those losses?
Burning Eye: My aunt has lived down the road from her sister-in-law for many years. They were both pregnant with their first children at the same time. Around the time my aunt gave birth to my cousin, her sister-in-law's baby was stillborn. I can't image the strain it put on their relationship. My father told me this—my aunt hasn't said anything directly to me, but she has called me off and on to check in, to keep in touch. And actually, her sister-in-law wrote me a letter a few months after Joseph died, and sent me a book she had found helpful.
Kenny: None within my family, but we had a neighbor across the street approach us shortly after Roxy had died. She told me about the two extremely premature births she had had where her two sons had only lived for a short time. It had been nearly 3 decades, but the details of it were immediate for her. She told us their names. She told us what their ages would be. She teared up. It was very comforting, somehow, to know we'd always be carrying Roxy with us.
Merry: I had always known of her existence, but the short life of the child who should have been my aunt became very clear to me after I lost Freddie. She was born in wartime and her death seems to have been swallowed up in the horror of loss that engulfed London at that time. Her mother died young (I wonder if in part from grief?) and neither my dad or his sister knew much about her. Searching for possible answers for Freddie's death I started to ask questions and discover a void of information about her; explanations a varied as rhesus negative and stillbirth and neonatal death and even, shockingly, the family memory had misnamed her. She was not Helen as I believed but Susan. I found this such a bitter thing, to know she had left so little mark upon the world and it stung me into being determined that Freddie would not sink beneath the waves in my family.
Josh: There weren't any losses revealed, but there were losses that I knew of that suddenly became real and sobering. My Grandmother and my partner's Grandmother both lost a child at full term. I have spent several hours talking with my own Grandmother about her loss and it was a meaningful experience. Fifty years has given her a lot of time to reflect on what happened to her and I felt like I was hanging on every word she said.
Julia: I actually can't remember when I first heard this story. I know it was before A died, though, I think, after my grandmother died, and certainly after there was an ocean separating us. Unsurprisingly, it became much more meaningful to me since A's death. My grandmother was pregnant with twins. It was the early days of the war, and Nazis were nearing the city where she lived. She evacuated, and gave birth somewhere in transit. The boy didn't make it. The girl did, but after a long and uncertain period of neonatal care. My aunt is named for the doctor who helped save her. I don't know whether my uncle ever had a name. Unfortunately, I heard the story too late to ask my grandmother.
Brianna: I vaguely knew of a miscarriage one of my mom’s cousins had and a second cousin who also had a couple of miscarriages. I did think that at some point I would find out of more family members who had gone through losses but that has not been the case. I often feel like the anomaly in the family in that regard.
Chris: No one in our family had gone through anything like losing Silas, except for my long gone grandmother who was one of 10 or 12 with only half that living into adulthood.
2. Did anyone who had already experienced babyloss reach out to you in the months after your loss? What was it like to connect with others who had already been through babyloss?
Burning Eye: My prenatal yoga teacher gave me the contact information of another mother from the class whose first baby had died in delivery a few years earlier, who had recently given birth to her rainbow baby. I wrote her almost right away, not really knowing what to say or what she would have to offer me in return. Our correspondence those first months after Joseph died has been invaluable to me--she was my confessional, my confidant, a source of hope that I could look to and see that, 3 years out, she was still grieving and remembering her son, but surviving. She was, in turn, incredibly open and honest with me, in a way that I think only other babylost parents can be, about the hard and sometimes ugly realities of grief.
Kenny: I guess I answered this in the above question somewhat, but I do remember another instance when we were still in the hospital after Roxy was delivered. An older woman told us about her son who had died when he was 5. She said "you'll never, ever get over it. You just won't." It was the most comforting thing that was said to me while we were in the hospital, which I can't really explain.
Merry: I had shared pregnancies online in earlier years with two women I had never met but had much in common with. We'd lost touch over time but I had heard that one of them, Jeanette, had lost her precious Florence shortly after birth. In fact that news, which came when I was first pregnant with Freddie, had been one of my first 'premonitions' about him. I wasn't aware of the death of baby Emma, whose mummy Jill had been such a friend in the past but they heard about Freddie's death within hours. Both arrived at my blog, to that first bitter post and brought their community with them. My comments were filled with their love, with the love of the people who would become my friends and who were my friends. Jeanette and Jill were the clarion call that brought Glow to me and me to Glow and I owe them a great deal for their guidance.
If fortunate is the word, I happen to have an incredibly close group of women friends who have also experienced a myriad of infant loss, from miscarriage through to full term loss and beyond. They were so utterly there for me, abiding and knowing too well what the pain was like to play grief maths or comparison games. I remember that one of them called me on the phone, a week or so on. I hated her for that call because I didn't want to be part of her world, a world with a dead baby son in the past and a life that had carried on after but I will love her forever for the courage to make it and I will never be able to thank her enough. Not only did that call force me to face up to the fact that life was going to go on but she taught me to do the difficult thing, to make the first connection to the newly bereaved and to never think it is better to say nothing.
Josh: It was like THANK GOD THESE PEOPLE EXIST IN MY CITY. All capitals and exclamation points and awkwardly jumping for relief to know we had support from people who really knew. Brianna and Leif have become some of our closest friends since our loss and Margot and George will always be tied together in my mind.
Julia: We have friends who lost one of their twins a year and a half before A died. In some important ways we grieve very differently, but we still understand each other in ways that other people do not. There was a woman at my sister's work who sent me a card very early on. It was a sweet card that for some reason just didn't make me want to connect with the writer in person, though she'd offered. A little later I wrote to a blogger I'd been reading on and off for years. Her reply was incredibly comforting, I think because she was able to answer my question, but not dictate. Before I understood what abiding was, she was abiding with me. And then, from her blog, through coincidence of timing, I found Niobe, who later became one of the original writers here at Glow, and whose blog is, sadly, no longer active. That first coffee we had shortly after discovering that we lived in the same city was probably one of my most significant moments in the life after.
Brianna: I started a new job on the eve of the first anniversary of George’s death. A couple of months after I started working I shared with one of my coworkers his story. She then told me about her daughter’s stillbirth thirty years earlier and her son’s stillbirth a few years after that of her daughter. She never went on to have any more children. I am around the same age that her daughter would have been and I’ve often wondered if it was hard for her to work with me because of that.
Chris: There were a few people we knew who told us about miscarriages in their past, but the only people that had anything similar to our experience were the parents of one of our good friends. They lost their son prior to our friend's birth. Other than that the community we discovered was all online.
3. If any of those babylost parents were from a different generation, what did you find was different about your experience from theirs?
Burning Eye: A family friend from my parents' generation reached out to me after Joseph died. In her letter, I was struck by the extreme sense of isolation she experienced after her daughter was stillborn in 1976. I just feel like there are so many more resources out there now than she had access to--books as well as communities like Glow on the internet.
Kenny: I feel like almost everyone I've ever met knows about Roxy. Part of that is social media, I believe. It's easier to share bad news. The folks from previous generations seemed to suffer more privately.
Merry: Slightly different but I have a vivid memory of meeting my future grandmother in law for the first time. Her daughter, my husbands mum, had died when he was a young boy. 10 minutes in to our first meeting, 15 years on from her daughters death, she had told me all about her. I was just 20 years old or so but I remember being powerefully struck by how an event most of my life ago was still like yesterday to her, still the thing she needed to tell people she met for the first time. Perhaps she knew that I needed to know. When Freddie died she was on my mind a great deal, even though she was long dead herself by that time. Something about that exchange had always haunted me but since losing Freddie it is a comfort. We had little opportunity to discuss her loss over the years but I wonder very much how losing an adult child shaped her in her later years.
Josh: After talking with my grandmother about her loss in 1962, I was reminded how much support we have had compared to her. She couldn't even imagine having a support group back then, and certainly not blogs and the internet and how easy is to find support on the web.
Julia: This past January, we attended a meeting at our synagogue for bereaved parents and grandparents. I wrote about it here on Glow. The most striking and comforting thing about it was the immediacy of loss and the depth of grief expressed by those whose children had died decades before. I felt for them, but I also felt like a permission slip to me, like confirmation that it was normal and ok to keep missing A, that I will love and miss him my entire life.
Brianna: The woman I referred to in the previous question whose daughter and son were stillborn, she never saw either of them after their births. While I was able to hold George and take photos of him, she never had that opportunity. Neither of them was given a name. I have regrets about not taking enough time with George after he died or having enough photographs of him and I can only imagine how much more difficult it would be to not have had any time or any photographs at all.
Chris: The parents were of the prior generation, and what struck me the most was how similar the experience of their loss and grief was. The circumstances were different, but their loss was still clearly profound despite the years.
4. Did you attend a local area support group after your loss? What was helpful—or not—about your support group?
Burning Eye: Both A and I attended a support group for bereved parents. I was unsure about it at first. It seemed so highly structured and the "syllabus" they gave us seemed to focus on what was "normal" in grief. I think also it was really hard to be in the physical presence of other babylost parents' grief--up until then, I had only connected with people through writing. But we gave it a chance, and by the second month, we were feeling a real connection with some of the other parents in the group. The way our support group was structured, it only met for 3 months, but on the last meeting (just a couple of weeks ago), many of us decided to continue to get together in the future.
Kenny: We did not. We went to grief counselling and connected with other bereaved parents online, but never attended a support group meeting.
Merry: No. Beyond the early days when people afforded me the right to tell his story, I've not felt comfortable talking much out loud about grief. I didn't want to face local people and see grief and loss face on. My husband would have hated it too and I think me going to a grief group without him might have driven anger wedges into our relationship. My one experience of a loss memorial service just made me angry; I don't like grieving by other peoples rules.
Josh: Yes, through the MISS Foundation. The most helpful part of our support group was being able to sit in a room with people who got it. I can't remember much of what was said over the past couple of years, but I do remember how it feels to sit in a room full of grieving souls.
Julia: I looked at the list of the local support groups, but never joined one. All of the local groups were mixed— from miscarriage to infant loss, and in those early days I felt like I wouldn't do well in a mixed group. I later met several of the people from my internet "loss cohort" in person, and I imagine that the way I think of them may be close to how some feel about good friends they made in their support groups.
Brianna: We went to a single meeting of a support group. We did not go back for a series of reasons but mainly because I was very pregnant with my daughter at the time and I felt uncomfortable being surrounded by people who were, mostly, so recent in their losses. The people we met there were incredibly kind and generous though. I’m sure if we had found it earlier we would have been more likely to go back.
Chris: It was definitely helpful at first, but we didn't stay long. It was a group support and everyone's circumstances were very different and eventually it started to feel like we were supposed to be helping them somehow, while we could barely help ourselves.
5. What role has the internet played in connecting you to other babylost parents? How has that been different from connections you may have made in person?
Kenny: It played a huge role for me. Through a mutual friend I was directed to Angie's wonderful writing on her blog, which really spoke my language and was not all baby angel kind of talk, which I appreciated. It plumbed the depths of what it really felt like for me. She talked about all the different kinds of losses which result from losing a child, and it made the experience feel much less lonely for me. From her blog I found Glow, which really got me through some tough spots.
Burning Eye: Before Joseph died, I didn't spend a lot of time online. I didn't read many blogs or forums. I feel so lucky that a friend of my sister's shared the link to Glow with our family. I felt like I found a home here. A safe space where no one was trying to give me answers or hide the ugliness of grief or try to comfort me with platitudes. The facelessness of the internet makes me feel safe enough to share honestly. Plus, I express myself much better in writing than I do in face-to-face conversations. I'm an introvert, and having a supportive online community in my time of grief has been immensely helpful.
Merry: Sharing stories, thoughts, art and experience online has been 95% of my support framework. I'm happier behind a screen, editing my words and screening the ones I read. For me it is easier to give and receive help in written form and seek out people 'like me'. I pick and choose carefully; I'm not religious and I don't feel I have an 'angel' and online it is easier to find people who feel like me. I don't find challenge in grief easy to deal with; the internet allows me to find a place where I am tolerated and can settle without feeling challenged. The only exception to that is my close friends and my sister. I am unusual to have such a breadth of loss experience in my 'real life' and those people all know and accept Freddie as a real person who will always 'be'. Those people I can let my guard down to; in the right company it feels okay to cry and, strangely, a relief if they cry beside me.
Josh: For the first year, the internet was such a vital lifeline. I read 10-15 blogs almost daily and would soak up everything that everyone wrote. After becoming close with Brianna and Leif, and after a year of heavy grief, I stopped reading blogs altogether. There wasn't a single perspective from a Father, which I think factored into it.
Julia: I breathed babylost blogs for a while. Especially blogs of the people close to me in the timing of the death of their baby or who started writing around the same time I did. I needed people who understood, and I think it helped a lot to be able to see how many things were similar in our experiences. The thing with the internet is that nobody is making you read any particular blog. It took me a bit to really-really understand it, to get that not every bereaved parent I'd encounter on the internet would be speaking my language, and that it is entirely ok to walk away if I don't feel like I can be really supportive or if what I am reading is pushing a button for some reason.
Brianna: The first year or so after George's death I spent a great deal of time either reading babyloss blogs or writing my own. I connected with several people who were/are integral parts of my healing process. Some, like Josh and Kari, who are now so part of my life it is hard to think where I would be without them. I am so grateful for the way the Internet has made me feel less isolated in my grief. I can only imagine how much more dificult the last three years would have been without knowing that there were other people in the world who have had similar experiences to my own.
Chris: The internet was pivotal in our ability to connect to others who shared losses similar to ours. It far surpassed anything "in person."
6. Many of us have found, as time goes on, that we are suddenly in the supporting role, as "experienced" babylost parents. How has reaching out to others with newer losses helped you in your grief journey?
Burning Eye: I still consider my loss to be pretty "new," almost 9 months out. There have been a couple of other mothers I've been exchanging emails with since early on--all of our losses were around the same time--and those relationships have been incredibly helpful and supportive for me. Even though it's been a bit like the blind leading the blind.
Kenny: I knew from our experience that it was really the folks who could relate to what we were suffering through that helped us. I clung to those conversations. I felt like I was part of some private, terrible club, but I was glad I wasn't alone. I knew we were in a unique position to help other people who went through it. We, unfortunately, have had friends that have lost children since our loss, and we felt those losses very deeply too. We were in a unique position to understand that they were going to have to relearn how and who to be. I'm not sure that's something you can understand unless you've suffered through it. I feel very protective of other parents who have lost children against the world.
Merry: This has happened quite recently for me. In one sense it was enormously affirming for me to find something I was 'good' at. Knowing what to send, what help to offer, not being afraid to email, guiding others in their support and just not making a crass and awful mess of a situation. On the other hand I found it humbling and shocking; this is still happening to people (why???) and I'm better than I used to be (how dare I get over him) and eventually the awful realisation that really I will never be fully healed. It has been an honour to be there for her and devastating anew to find I am the person who can be.
Julia: In smaller and larger ways, I'd been that person for several others. It is humbling, and devastating, and tender, but also normal and even somewhat empowering. The most important thing, I've found, is to keep to that thing we wish others would've done for us—remember that it's not about me. That's hard when the reason you know what to do is that your own grief has taught you. But that's also how you know what's important.
Brianna: As life has moved me further and further from his loss it has become more difficult to connect with the emotions that I felt in those early months. I think this is a normal progression of grief but, strange as it may sound, there are times that I miss those moments of bone-crushing sadness and uncontrollable sobbing. Those were the moments that I felt closest to George and as the years have passed they have become less frequent and less intense. There are times when I want to feel that intense connection with his loss and reading things from other people fresh in their grief puts me back in that emotional place where I can feel more connected to him.
Chris: I am glad I can be supportive to people who join this terrible tribe. Yet somehow it doesn't really help me all that much in my own grief and loss. It all just sucks, for us, and now for them, these new babylost parents. I wish I never had to know how this feels.
7. How have you found yourself relating to other people's grief in general? What about people around you--friends, coworkers, neighbors--who have experienced the loss of other family members, not babies?
Kenny: I suppose I'm not afraid of the grief of other people as I believe I was prior to losing a child. I remember being terrified of what to say to someone who had lost a parent. Desperately wanting to say the right thing. I now know there is no right thing. I now find it almost laughable that I considered my words to be of such import. Now I know it's just a presence that counts. Just a hug and and "I'm so sorry" and helping them with something practical, because practical things still have to be done. Groceries need bought, kids need entertained and those gestures matter quite a bit.
Burning Eye: Like Kenny, I'm not as afraid of other people's grief. I also don't feel so inept. I know there are people in my life who experienced loss before Joseph died, and I just wasn't able to be there for them. I didn't understand how. Now I understand the value of just checking in—a short phone call, an email, a card. Just letting people know you're thinking of them, even long after the loss. And also, since I appreciate it when people ask me to talk about Joseph and my pregnancy, I know now that it's okay to ask others to talk about their loved one who died.
Merry: I'm better and I'm worse at this. I don't think I say 'the wrong thing' so often but I also know I lack tolerance for some loss, which is not admirable in the slightest. When older people die, or when someone less close than a husband or child died, a rather small and mean bit of me says "but it's not your baby" before I even know I've thought it. I'm not afraid of death or speaking with people who experience loss and I think I manage that okay. I'm pretty good at not saying "I'm sorry your aunt died... but hey! it wasn't your baby!" and I genuinely mean my sympathies and am happy to comfort. The truth is though, I have to be strict with myself in not playing the same comparision games that I hate people applying to me and my loss.
Josh: If there is one way in which losing Margot has changed my life, it's how I would answer this question. I don't think I understood grief before losing her and I certainly couldn't feel grief in other's. Grief to me now is this embodiment, this living, active, stubborn thing that I feel not only connected to in my own life, but also in those around me. People always talked about being more empathetic and it always felt like such a trite response to something so shitty...but now I get it. It's true.
Julia: I don't really remember how I was about other people's grief before. I don't think I was horrid—I can't remember saying obviously stupid things, for example, and I think I'd remember if I had. But I feel like there were instances, like with the friends who'd lost one of their twins before A died, where I wasn't supportive enough some time down the road from the actual loss. Now I am more comfortable in the presence of grief. It's not that others' pain doesn't cut me. It's that I understand in my gut that there's nothing to say but "I am sorry." And so I say exactly that, and I look the bereaved person in the eye. And I try to remain tuned in over time to lend an ear and a shoulder.
Brianna: If George’s loss has taught me anything about human interaction and grief it is that simple is always best. An “I’m sorry for your loss” or a “my heart goes out to you” is better than anything else I could ever say to anyone grieving a loved one. I’m not vain enough anymore—death tends to humble one’s spirit- to think that I have the secret words to make someone’s heart stop aching. I hate it, to this day, when people try to minimize my grief in order to make themselves feel better about death so I refuse to be that person who does it to some one else.
Chris: I am far more aware of others' losses now, and I am not afraid to speak to them directly, and even more importantly, to just listen. The people that said "I'm so sorry for your loss, what can I do to help you? I love you and I'm here for you," always made me feel the best. I try to do the same for others now. And I try to use the person's name, or identify them specifically. I love it when people say Silas's name to me.