1 | Do you feel as though a higher entity/supreme being/energy force has a presence in your life? What do you call it, and what makes you feel it exists?

Bon :  I have mixed feelings on this one...I don't have a faith, per se, but am willing to err on the side of Pascal's Wager and generally try to live as though there might be some greater spirit of good and enlightenment out there. If I were to call it anything, I suppose it would be "god" (intentional small caps)...but that's as much a Sunday School hangover as anything else.

Janis :  I do feel there is a power/force bigger than us humans. I do not have a name for it though... sometimes I call it the Universe. I know we only have seeming control over some things, and the rest, is this force at work, or rhythm...

Julia :  I do think there is something out there. But whether of the somethings there is a being supreme over all the rest is not something I think about too much, or even care that greatly about. It would probably be considered a strange position for a Jew, but then again Judaism in general doesn't place particular importance on the matters of the other side. I find that it suits me just fine.

Kate :  I never thought there might actually, really be a supreme being or presence until Liam died. I physically felt his soul leave his body after I asked the presence to take it, and make it safe, and make it whole. And it did, and with the gift of that experience my entire worldview and belief system and heart have been altered forever.

Niobe :  I think it of as the tetragrammaton, the sacred, unutterable Name.

Tash :  No, I really don't. I guess on occasion, if I felt anything, and had to pinpoint a location, it would be a force from deep within. Sometimes it's just indigestion.

2 | Describe, in a word or two, the nature of your spiritual self before and then after the loss of your baby/babies.

Bon :  Before...critical of explanations. After...more critical of explanations.

Janis :  Before... still somewhat cynical. After... a bit more open.

Julia :  I don't actually think that I changed in this aspect at all. I do not feel entitled to special favors, before or after. I don't think the universe revolves around me, or anyone else. I think it just revolves. But now and again I get to catch glimpses of beauty and wonder in it.

Kate :  Before... indifferent, self-sufficient, self-centred. After... blown open, full of light.

Niobe :  I don't think you can exactly call me spiritual -- not before and certainly not after. I deal with religion the way I deal with most things: rationalization and over-intellectualization.

Tash :  Before... interested on an intellectual level but certainly not invested. After... validated.

3 | Do you pray, even if you wouldn’t call it praying? To whom? What for?

Bon :  I do. It always surprises me, and usually only happens in moments of extreme emotion. My prayers usually consist of one of two words..."thank you" mostly, for moments of extreme beauty and grace, or "please," in moments of extreme desperation. They're directed to the universe.

Janis :  I say Buddhist prayers in the morning, which is more like a ritual, and a meditation/study than a request, or asking for something. It's more for self-improvement; as I read the words I ponder the meanings (if my mind is not elsewhere). But I do sometimes request for strength, healing, for myself, for others. I ask them from the Universe.

Julia :  I do not often pray in the traditional sense. I never pray to ask for things or outcomes. I sometimes think of moments of piercing beauty as prayers-- visual prayers of acknowledgment and gratitude. There are also words of truth that sometimes make a sort of a prayer in that they are the voicing of the sacred and the raw. And there are blessings, formal ones like the blessings of our children each Shabbat, and informal ones that tend towards those sacred and raw truths.

Kate :  I would call it a conversation more than a prayer. I summon, and sometimes it answers, sometimes not. Sometimes it is Liam's light, sometimes it is that guiding presence on the night he died. I don't ask for anything other than company, comfort. I just want to talk.

Niobe :  Aside from the Shema just about my only prayer (and it's not a Jewish one at all) is: Thy will be done.

Tash :  I never used to pray, but I certainly used to wish and hope and have (little-f) faith in things. I find wishing and hoping meaningless exercises since last year -- there's nothing I want, nothing I could imagine wishing for, I hate to hope because I fear the let-down. Funny, I'm an atheist, and yet I've profoundly lost my (little-f) faith.

4 | Is there a particular line of scripture/teaching/sentiment that you find particularly helpful? Or is there one that’s commonly referred to but is unhelpful?

Bon :  Buddhism's four Noble Truths - all of which relate to suffering - were about the only formalized religious meditations in which I found resonance and comfort and some bit of a path to try to stumble along towards understanding and healing.

Janis :  I am a Buddhist so I can ditto Bon's answer; and in general I have found Thich Nhat Hanh's teachings to be very useful, especially those in the book No Death No Fear.

Julia :  Nothing that stands out, at least not from early on. Later there was this passage from the Rosh Hashana liturgy that I went back to hear again:  May we never abandon our memories. May our memories inspire deeds which lead us to life and love, to blessings and peace.

Kate :  Nothing in particular, and everything from all places: art, music, philosophers, friends. Rumi. Generally speaking, I am a Buddhist but don't know it yet.

Niobe :  Job 38:11: Thus far shall you come, but no farther.

Tash :  I used to think I was an atheist who leaned Buddhist, but lately when faced with such lessons, I immediately respond with arguments. I actually found great peace in this traditional Gaelic Blessing for reasons I outlined at the end of this post. It doesn't hurt that it was given to me by a person whose family had experienced the loss of a child.

5 | Did your faith offer rites, rituals or teachings that acknowledged your baby and your healing? If not (or if you didn't seek it out in an organized fashion), what rites, rituals or mantras have you adopted as your own?

Bon :  What few rituals have slowly evolved for us have largely been ideas that have come from the babyloss community...particularly having cupcakes as a family on his birthday. After he died, we did plant trees in our yard and a close family friend who is also a retired minister spoke, but not directly of god...rather of life and remembering even short lives.

Janis :  Yes, there were rites, rituals, prayer ceremonies... but I am not sure they aided in my healing.

Julia :  Our rabbi came to the hospital while I was being induced. She was also the one who performed the burial ceremony, and who encouraged us to come to Temple the first Friday night after the funeral to enter the congregation as mourners, to be publicly acknowledged as such. In general, Judaism's emphasis on the idea of mourning being for the living rather than the dead was very helpful-- it framed our feelings as normal, justified, and accepted by the community.

Kate :  I have no rituals other than writing, and listening, staying open. After he died I never considered seeking out church-based recognition (a grave, a service, priests, blessings, scripture). After he died I realized that the framework of Christianity, while comforting in many ways, was not quite the right shape to encapsulate my truth.

Niobe :  My faith has a number of comforting and healing rituals, but I chose to not to participate in them. Sometimes I wonder if that was a mistake.

Tash :  I think what I most envy is the structure and vocabulary that religious ritual can provide at a time like this. I can see a benefit in having a plan already laid out, complete with things to say, lessons to fall back on, beliefs that incorporate loss. I also think the community in which some of these rites of death take place in could be beneficial. I adopted nothing.

6 | Some people say that in a foxhole (a desperate, life-threatening situation), there are no atheists. You’ve been in a foxhole. Discuss.

Bon :  I struggle with this...part of me wants to say that for me the foxhole wasn't the period of his short life...but the survival after. I did not pray or plead for him to live, only prayed that he not suffer, that he feel our presence and our love. But then, even that was an appeal to the universe for a sort of mercy. Nonetheless, the experience did not cause me to believe either more or less in a god... perhaps I didn't have enough faith to experience it as a test of faith.

Janis :  hmmm... this is tricky. I do not see Buddhism as a religion (but a philosophy) so I guess you can still call me an atheist?

Julia :  I sometimes think that given my profound aversion to the idea of an interventionist God, I am sort of a functional atheist. Like Bon and Tash, I had no crisis of faith, but in my case it was because I did not feel that my faith, or anything else, was supposed to have been a shield against misfortune. Bad things happen, and I am not immune.

Kate :  I don't think that statement is entirely fair, and it's too often misinterpreted as a dig on atheists. What it means to me is that when you suffer -- when your blinders are removed and you lose your obliviousness, see the other side -- even the most hardened cynic is often left grasping for light, for meaning, for that presence. That is exactly what happened to me.

Niobe :  I've never been in a foxhole.

Tash :  Wait! (waves hand frantically) I'm in and still an atheist! And this may sound odd given my answer to the above, but often I'm relieved to be. I've seen a lot of mamas struggle with their faith after facing the unthinkable pain of losing a child, and I'm thankful I only need to concentrate on keeping my head down when the bullets fly, not simultaneously worry about the metaphysical reasons for my being there and the profundity of my survival (or not).

1 |   How would you describe your relationship to fear before and after the loss of your baby?

Bon :  I thought I was pretty fearless, that I'd been there, done that.  Now, I live with this metallic tang in my mouth, far more painfully aware of all the fragile houses of cards beneath my feet.

Janis :  Before: I can conquer it and beat it to a paste. After: It strangles me and I am trying to strangle it back.

Julia :  Before: an infrequent visitor. Now: an egg timer. I am terrified for this baby, terrified of missing something, missing a chance to save him. I hope it gets better if this baby makes it, but I don't know... I get the cold slimy drag me to the bottom thoughts about everyone now, including Monkey. I kick at them, I try not to give in. I mostly succeed.

Kate :  Fear was a bad stink that preceded a sprint in the opposite direction. Now, fear is the price of admission.

Niobe :  I've always been afraid.  That hasn't changed.

Tash :  Before, fear was a rollercoaster ride, messing up a dinner party, another Republican presidency.  Now, fear is ever-present, my constant companion dressed in black and carrying a scythe.

 

2 |   Is your lost baby/are your babies present in your life? In what way?

Bon :  Seldom.  When I feel him, it is mostly an act of attending on my part, a stillness and reaching for the sense of wonder I felt when he was first placed in my arms.  The need comes less acutely these days, and there is a counter-need, too, to let go, to let him be, to honour the distance between us.

Janis :  Yes, intimately. The girls talk about him often too and last night Sophia told me, "Every night I see Ferdinand in our room." He has also appeared in dreams and .... spiritually... to my friends.

Julia :  As a longing, a missing. Monkey talks about A a lot. We talk less. I burn candles when I need them. According to the ultrasounds, the in-utero baby looks a lot like his brother. I don't know what that is likely to mean when...

Kate :  Sporadically. When I do get a sense of him, he is full of wonder and awe and peace, and he is whole, and he is simultaneously all the ages he should have been. He is my companion.

Niobe :  No.

Tash :  Well, there's a lilac bush, a tree, a soon-to-be-bench, a bracelet, a blog, and a box of ashes.  I guess she's everpresent.  And completely, totally, unreachably not.

 

3 |   Tell us about something said or done after your loss that left you feeling nurtured or supported.

Bon :  The times when people acknowledged him, said his name...and the times his father and his grandmother each said out loud, "I loved him too."

Janis :  Acknowledgement. When they do things for him. When friends just support my space and allow me to be.

Julia :  1) We said the funeral would be for family only. Our friends asked if they could arrange for food for us for after, and if they could come then. We didn't tell them yes until nearly 6pm the night before. When we came back from the cemetery, the table was set, the nicest Old Country catered comfort food was there, along with strong drinks, and a friend who made it all happen. She told everyone else to come a bit later. So when they did, we were ready to see them. 2) Some friends who asked to see A's pictures. Not so much for us, they said, but for themselves. To make him more real to them.

Kate :  Simple but rare...“I heard about what happened to you and to Liam. My heart hurts to think of it, and I can't believe what you've been through, and I’m so sorry.” (In one year, only two people have risked their own discomfort enough to say this while looking in my eyes and not flinching.)

Niobe :  I can't think of a single thing.  But, in general, I'm not very comfortable with being nurtured or supported.

Tash :  A fellow dog-walker whose name I didn't know, and who didn't know mine, came to my door a week after Maddy died with a card and a gift, and before leaving asked, "Could you tell me her name?  That way I can think of it, when I think of her and you."

 

4 |   Tell us about something said or done after your loss that left you feeling marginalized or misunderstood.

Bon :  The most marginalizing for me was the silence.  The pretense that all was okay, or that speaking of "it" was just too awkward to even acknowledge, left me feeling exposed and dismissed and adrift...because that response forced me either to don a mask utterly at odds with my inner reality, or broach the unspeakable myself.  And I was too weary and hurt to have the courage for that.

Janis :  Silence, pretending that nothing had happened.

Julia :  My MIL was terribly unsupportive, destructive even. She thought we were doing the grieving thing and the telling Monkey thing wrong, and she just kept telling JD about it. She is also the only relative who hasn't asked to see the pictures. Not that we were close before, but the rift now I don't think can be closed.

Kate :  “Gynocological drama... this kind of thing happens to everyone, you know.” (cue instantaneous Tourette's Syndrome, all-over body rash and delusions of faking my own alien abduction)

Niobe :  I can't really blame people for this, but the flowers, the endless repetitions of  "I'm so sorry for your loss," the over-solicitous "how are you doing?",  the intrusive questions ("what were their names?" "where are they buried?")  ate away at my soul. 

Tash :  Tie:  "Did you bring the baby?" (receptionist at my six-week check) and "We're not going to go tonight -- they say it might rain."  (Family member, on the morning of a nationally-sponsored candlelight service for children who've died.  They'd known about the service for three months.  And no, it didn't rain.)

 

5 |   What's taken you a long time to do again? How did it feel, if you have?

Bon :  To stop comparing my lot against those of the people around me. What part of me has succeeded in this feels free.  What part of me has not, yet, still feels small and bewildered and vaguely persecuted, resentful of having to repeatedly adjust my expectations.

Janis :  Baking. It's an act of love for me, a way to nurture those I love. For a long time, I did not have my heart in me to bake anything. The first time I did it again, it took all of me, I was exhausted. I still do not bake as often as I used to... and everytime it still takes much energy.

Julia :  It took a long time to go into the building where my old department is. I didn't want to face these people. I didn't know if they knew, and I was so not looking forward to having to tell them. Eventually I had to go for work purposes, and it went ok. My old advisor was great, though that was not necessarily predictable. Others were mostly ok.

Kate :  To truly revel in this body. I'll let you know when I'm successful. Or not.

Niobe :  To have a relationship with my family.  My ties to all the members of my family have been frayed or shredded into unrecognizable pieces.  I can't imagine I'll ever be able to mend them.

Tash :  Taste.  Honestly, it came back incrementally, and only recently did I realize that I'm enjoying eating my food again.

 

6 |   How would you describe yourself as a partner before, and after?

Bon :  Intensely engaged but perfectionist. Now, more brittle and less present, but gentler, too, on both of us.

Janis :  I have become less demanding, more tender, gentler.

Julia :  I think I am more patient and more understanding now. Willing to give more slack. More willing to articulate what I need rather than getting pissed if he doesn't figure it out himself. Usually, usually that's true. Not always. Especially not when I feel myself stretched to the limit with fear and worry. But he has also learned to handle with more care, and that helps.

Kate :  Straightforward and sensible and confident. Then a prickly, touchy, needy, distant, full-of-shadows escapist.

Niobe :  I have trouble even understanding the question.  Being a partner isn't one of the ways that I define myself.

Tash :  Patient, honest, ready to prove the depths of my love, dealing with adversity through humor.  Now, vulnerable, impatient, a bit more needy than I'd prefer, still dealing through humor, thank goodness.  As for honesty, I once threw out a "NICU Graduation Party!" invite (after calling to confirm that Maddy didn't exactly graduate) without telling him, and for some reason it looms over me like a badly kept secret -- that somehow it's dishonest if we don't share every waking moment of this grief in lockstep.

 

1 |   In a word, how would you characterize yourself before your loss, and then after?

Bon :   Me.  And then...this broken, bitter, vulnerable open wound.  Now...me, tempered.

Janis :   Half-asleep. and then half-awake.

Julia :   Prone to occasional fits of complete happiness. Then: raw. Now: aware.

Kate :   Oblivious. Then roughly awakened.

Niobe :   Before: sad. After: sad

Tash :   Young, very young.  Then old, very old.

 

2 |   How do you feel around pregnant women?

Bon :   In the early days, like their bellies were sharp as knives.  Now...i am one, yet again.  And still i feel different, utterly alien in the world of benign joy and expectation.

Janis :   Whole mixed bag of contradictory feelings. awe, dread, grief, etc

Julia :   If she is one of ours-- bereaved, infertile, or just someone who gets it-- protective and apprehensive. If she is "the other," like I am in a mine field. Them I try not to talk to much. Or at all.

Kate :   Filled with dread on their behalf.

Niobe :   Terror. What if the same thing happens to them?

Tash :   Blinding jealousy, anger at my limitations, fury at general naivete.  Can’t stand ‘em.

3 |   How do you answer the 'how many children' question?

Bon :   If i think i'll see the person again, i may answer honestly.  Usually, i just mumble.

Janis :  Depends on where, who and when and my mood. And how strong I am feeling in that moment. I hate to cry in-front of others.

Julia :   We have one living child. This is almost a dare, and a damn fast way to see what the one asking is made of. Or to at least to get them thinking about what they might hear next time they ask personal questions.

Kate :   It's completely random depending on my mood and my take on the person asking. Sometimes, I need to speak his name.

Niobe :   One.

Tash :   Depends on the day, the person, the conversation.  I wish I had a pat answer actually, because sometimes the pause is a bit disconcerting to the listener.

4 |   How did you explain what happened to your lost baby to your living children? Or, if this was your first pregnancy, will you tell future children about your first?

Bon :   He was my firstborn.  With his younger brother, we mention his name, look at his trees in the backyard...but have not yet reached the place where there have been questions or stories, so it feels forced, a little, and sometimes like fiction.

Janis :  We told the girls that Ferdinand's heart stopped beating and he died and cannot be with us in the same realm. But he is carefree, living amongst the stars and always near us. And always in our hearts.

Julia :  We said "he won't get to be born" (long story about relatives and semantics), and two minutes later she asked "Did he die?"

Kate :   When it happened my older son was just two. One day he said quietly from the backseat, out of the blue, that Liam didn't need a carseat anymore. I told him that was true, that Liam was a star in the sky now. He is three now and I don't think he explicitly remembers anymore. That's fitting for now, but it makes me sad.

Niobe :  I didn't have to say anything. He already knew.

Tash :   The baby died, she was very sick, and she can’t play, eat, drink, sleep, or cry anymore.  No, we can’t take the milk to the hospital and make her better, we can’t bring her home, she stopped breathing.   We need to remember her now.  Why does Mommy have salad on her boobs?  Good question.

5 |   What would another pregnancy mean to you, and how would you get through it—or are you done with babymaking?

Bon :   Doing it now, for the third time since we lost him.  One living child and one miscarriage in the interim, and one currently stitched-up cervix, a lot of bedrest, and twenty-plus weeks still to go.  It's an existential mindf*ck, like being a marionette strung between poles of hell and hope, jerking, without any control.  And yet it is a gift.  Sort of like a pet grenade.

Janis :    Gosh... after this loss of innocence I think the next pregnancy will be hellish. Every second  a moment of dread; a threshold to the end(death). Yet, I feel defiant about it too. As in, I want to rejoice every second and not let this get me down.

Julia :   Also doing it now. Calmer than I thought I would be. Except when I am not. My hope is tiny and doesn't speak much. Love and fear are big, but spend much time in their respective corners. The mindf*ck for me is that very raely does love get to stand up without fear coming out too. But I don't know that I could handle this if I didn't let love in. Many more weeks to go.

Kate :   Another baby would be some kind of dysfunctional redemption. Even though our loss was due to a rare form of twinning that's unlikely to strike twice, my husband says that if I want to get pregnant again I'll have to find someone else because he'll be busy running away to Mexico.

Niobe :  I'll never be pregnant again.

Tash :   Another pregnancy would mean I was comfortable playing Russian Roulette with the Universe.  And I’m not that brave, yet, plus I’m old.  I may be done.  Blogposts forthcoming.

6 |   Imagine being able to step back in time and whisper into the ear of your past self the day after your baby died. What would you say?

Bon :   Keep going.  And do not be so afraid to speak his name.

Janis :  I really dunno. I could not think of an answer for this one.

Julia :   It will get much worse than you think. The person you think might be an ass, will be. A lot. Trust yourself. But give yourself time. More time than you think you need. A lot more. That going back to work soon thing? Rethink it.

Kate :   I'm proud of you (for being brave enough to witness them, to love them in ways that were tactile for them, for changing the diapers of two two-pound babies. For finding the voice to sing to him on his last night).

Niobe :   People are going to say a lot of things to you. Every one of them will be a lie.

Tash :   Point is moot, I wouldn’t have listened anyway.  But I suppose on my way out the door while I was giving myself the finger, I’d yell over my shoulder, “You’ll meet many people who will understand, and who will bring you great comfort.  Oh, and yes, you’ll have sex again, speaking of which, I’ll see myself out.”