gone

Four years. On Sunday it will be four years since I held Freddie in my arms while he breathed slower and slower until I could gently feel his wrist, that tiny, purple-cold hand already turning white and know that I could feel no pulse, that he was gone. That eleven days of fraught love, fierce hope, fluttering joy and brutal instinct had subsided into a quiet room, still bed, arms that held.

I've tried to remember how to summon the tearing pain I felt back then, honour him in some way with eleven days of memories, quiet time, thoughtful words. Tried to find some way to make meaningful the loss of him, the hole of him, the whole sorry mess of death and destruction and all the ribbons of grief that have tied themselves around the feet and limbs of our family.

I could find gratitude. Friends have surrounded me in community this year, making daffodils for him, posting pictures of them from all around the world as they dance and shine and call a little baby boy to memory. Gratitude I can do. I can be grateful for finding gratitude.

I could find rage. Rage that when one of my children changes school next month I will have to find the words to explain that yes, it was four years ago, but she is still affected by her brother's death and that everything they learn about her must be tempered with the understanding that she has this loss in her soul. Rage that when people can't find their way into the mind of my youngest daughter, they have to remember that she locked up sadness and hid it inside herself and learned to be impassive when she was just five years old. Rage to see my false jollity hurting my biggest girls, old enough to know I'm faking, not worldly wise enough to understand why. And wondering if it means I'm okay in there, behind the jolly. I don't want that for them. Rage that all I can do on his birthday is try to smile for as long as the girls are looking at me, that we go the day without saying his name, that we laugh and make the best of it - so British are we - and then I look back at the photos in the evening and there is sorrow written across the face of the man I love. And he probably didn't even know it was there. Would probably say it wasn't there. But I know his face and I know it was.

I could find regret. Regret and resentment for a boy who had dark eyebrows and who never got to hold my face and utter the words his brother does - 'More! No! Here! Go! Again!' - that Freddie looked for me in need just once, when he crashed and they jerked him back and I saw him eyes wide and alarmed at the fuss and I was behind the mess of nurses and thoughtless registrar and couldn't ease him. Wasn't the person for the moment. I can find regret that four years have passed and family life is busy and sometimes the candles for each of his eleven days are not lit till late at night, resentment that his brother broke my thoughts of him by getting ill during those days and I had to wrestle my focus, look at now - not then - and I was angry at that. Angry at them both. At both my boys. Together.

I should be angry at them both for colluding to eat all the biscuits or for drawing on the wall, not because one is dead and stopping me from dealing with the others asthma and the other has asthma and is stopping me concentrating on the other being dead.

That's not how it should be.

But I couldn't quite find the babylost mother in all of that. She was missing.

Then the news arrived. A beautiful young woman lost. A daughter, a sister, a mother, a wife. Someone with it all before her, a family who had already suffered enough, a family broken to pieces from out of the blue.

And it all came back. I left the house one day and when I came back our world had shattered. A parent should not have to tell the world a child has died. Sisters should not sit, shell-shocked, asking again if this is true - how can it be true? How can life become death? No one who loved should have to pick up the pieces, carry on, make the best of it, fill the gaps, learn to smile again. Keep going because there is no choice and you cannot simply die along with them.

I can see them, in my mind's eye, just like I see every family who pitches into grief. The sofa still feels the same when sat on. Meals must still be cooked for hungry children. Deeds must be done, from the extra-ordinary horror of arranging a funeral, to the mundane of putting out the bin. Life stops and carries on and your head feels a million miles wide, light as air, deranged by the ordinariness of the bizarre.

One minute you are just a family and the next minute nothing will ever be the same again. Beyond pain, that other father said. And yes, I see the sense and madness in that. Losing a child is a place beyond pain and you learn to live there.

Four years. My boy should be four years old on Sunday. I've had long enough to know this happened to us, long enough to be back to happy days and a healed(ish) heart.

But he's gone - and I still do not really believe in it. Do not believe these four years have happened, that we've lived them and survived them.

Just... gone... just like that. Gone.

People talk about the stages of grief: denial, anger, bargaining, depression, acceptance. Is it a lineal experience for you or a cycle that repeats? How do you cope with your changing emotions? How do you cope with hearing about loss in the wider world since losing your child? Does it affect your emotions in anyway?

circle time

It occurred to me later, like days later, that in that room we were the newbies. Going into the week of A's sixth anniversary on the Jewish calendar, and ten days short of the same date by Gregorian calendar, we were the newbies. Or, perhaps, in that room we were all veterans, and it didn't matter when exactly each of us started. Only it did, a little.

The woman who planned and organized the whole thing, that day she was ten years and a day on from the day her nine year old died in his sleep. To the right of her-- a woman whose 13 year old died close to 50 years ago. Two brain tumors in the room, a few cancers, three babies, a rocket, and a seven year old who ran onto the ice to try to save a dog. He didn't have boots. That was 40 plus years ago.

A Gathering to Remember, it was called. Our two rabbis and our cantor, he of the literally award-winning voice, closed the circle that otherwise contained bereaved parents, grandparents, and a sister. Each of us had the opportunity to speak in turn, though some chose to let their spouse do all the talking (like, ahem, a certain male of the species residing in my own house).

Because we sat down to the left of the organizer, we ended up being the last to speak. Which, I think, turned out to be a blessing of a sort. I wanted to be there, to sit in the room with these people, most of whom I didn't know before that day. But I didn't prepare anything specific to say, and I didn't bring anything ahead of time. I didn't even know what I would say beyond the crystallized truth of our existence-- my son died, I love him, I miss him, and somehow my crazy busy full and overflowing life is not complete without him. Ten seconds max. Had my turn been early on, that's probably all I would've had to say. Because, you know? As is, I spent most of the time listening. Parents and grandparents, 10 years out, 11, 50, 50 again, 15, 40-ish.

Before we started, a younger woman came up to one of the rabbis, saying she was just here to support "her," and that she'd sit in the corner. Oh, no, please sit with us, said the rabbi, my rabbi, who came to my hospital room and officiated at the funeral. "Her" turned out to be her mother, and the mother of that seven year old boy who ran onto the ice without his winter boots. When it came her turn to speak, the mother struggled, cried, pulled out the picture, and struggled some more. The daughter offered to speak in her stead, from a sibling's perspective, but the mother pushed through, and got her story out, disjointed in pieces, but she did it. The daughter got to speak too, showing us a scar that is her very own tangible reminder that her brother was actually here, and reminiscing about a family trip chock full of good memories that they got to take before her brother died.

Would I ever forget the date my son died? The day he was born? I'd think that I could never forget the date if I still had the mind to remember A at all (or, you know, anyone else-- my grandmother's dementia taunts me from afar as a pretty terrible way to go). But this boy's mother forgot. She said it happened in January. December, the daughter gently corrected. And yet she fought to be the one to tell his story. And yet, listening to her talk about it, that slip-up seemed so very minor. In fact, except for seeing an old woman in front of me, except for her telling us how long ago this all happened, from her voice, from the urgency in it, from the burning love and yearning, you'd think it just happened a year or two back.

When our turn came, I ended up thanking the group and talking about how it turns out I needed to hear them all. Because my ten second summary, it's all true. But so is the perception many of us share that the outside world is rather impatient with and rather forgetful of grief. And sometimes I start to wonder whether my own gut feeling, that this grief is not something I will ever forget or get over, but something I slowly get better at living with, whether this way of looking at things is not right, whether we should, at some point, just be fine already. I am, though. I am fine. And yet, I am also grieving. And listening to everyone in the group, everyone who is a bit ahead of us, and everyone who is waaaay ahead, in the end that felt like a permission slip-- yes, grief is like that, and it is ok to sit with it, now and whenever. Grief is like this because love is like this, and in the end it is still very simple-- we love them, and they are dead.

I finished by talking about the quote I noticed in the new High Holidays prayer book our synagogue started using recently. It was embedded in one of the notes in the margin that are on virtually every page of this very new prayer book, and it hit me so much that I had to come back later with my phone and take a picture of it. I've had the quote on my phone ever since I did that in September, and that morning I pulled out the phone and scrolled through the gallery back to the quote.

It is used in the book to argue that a certain passage should not be seen as a request for restoration of what once was, but rather as a plea for resilience. The quote is from Elie Wiesel, who really does know from resilience. "God gave Adam a secret--" he says, "and that secret was not how to begin, but how to begin again."

Do you ever feel self-conscious about your grief or its expression? Have you found fellowship with others in a different kind of a grief boat? Those on a different timeline? Have you had unexpectedly validating or unexpectedly invalidating grief experiences?

balancing, act

I like Matthew Perry. Not, as many people of my generation might, because of his role on Friends, but rather because of his guest spots on The West Wing followed by his starring role in the sadly short-lived Studio 60 on the Sunset Strip. (If you love musical theater and good comedy, look up their second episode, The Cold Open. I still smile when I think of the number that is the namesake of the episode, the one they are working to the whole time. But maybe it's just me. Likely, even.) So it is not entirely surprising that even though I usually try to watch what I can in DVR delay so that I can fast forward all the commercials, I stopped and watched the ones NBC kept running for Perry's new show, Go On. The show premiers tonight, but the pilot episode has been sitting On Demand since Olympics, when they started running the relentless promotion.

Do I sound like the TV Guide up there? Sorry... I think I got that all out of my system now. So let's get on with the main event-- the show and what we think of it. Well, what I think of it for now. Though I am hoping that (provided my description doesn't make you want to destroy the TV rather than watch the show, which I hope it does not) you watch it at some point and chime in. Or vote early, vote often-- comment before you watch, comment after you watch. Heck, comment instead of watching.

Why, you ask, am I darkening your screen with a post about a TV show? For one, the main character, Perry's character, is grieving. We learn in the very first scene that his wife is dead and that he shows up back at work way before anyone is expecting him to be there. Shortly after that, he is told to get his loudly protesting self to group therapy. Grief sitcom, then? Why, yes, and I am not telling you this to forewarn you from ever going near the thing. Because when I began watching the pilot, I rather expected to end up disappointed if not outright hating the thing. What I got instead is a heaping bowl of recognition, with a side order of wait, are they going THERE? And yes, yes they did. As suggested by one of the promos you might or might not have seen, Perry's character really does stage a March Madness style head to head Pain Olympics tournament. No, really! What's even crazier, for me? It works.

If you know anything at all about the grieving me, you know that I hate Pain Olympics with a passion. In fact, I caught myself playing Reverse Pain Olympics. In the four plus years since I wrote that post, in this particular area of my world view, nothing changed. I still hate Pain Olympics, and I still think that nobody but each individual grieving person is allowed to say to themselves that it could have been worse. So how is it possible that given this world view, I am on board with the Go On's treatment of the subject?

I think that in a strange and completely unexpected way for me, what they do is actually affirming, not dismissive of each person's pain. First of all, they all agree. They all sign up, and they all accept the rules. Second, there seems to be an underlying and thick layer of good will. Those who fall in the earlier rounds are shown getting into the cheering on of their group mates. Even in "losing" a face-off, there can be recognition of the depth of pain. The character who is so distraught over the death of her partner that she can't pull out salient details to tell the story in brief to fit in the amount of time allotted is told that she is losing the bout "on technicality." That seems validating. And? they manage to do that without completely dismissing the dead pet character who "wins" on that selfsame technicality.

What was really profound to me, what sang to me with piercing clarity of a single string going on after all the rest of the instruments have faded, what I appreciated both as honest depiction and as a fearless move by the show's creators, were the brief vignettes of the characters in their own spaces, on their own time. I dare you to remain composed through the whole sequence, especially when they show us where the Pain Olympics winner's crown comes to rest. And may I remind you now that this is supposedly a half hour sitcom?  

So if, against my every intuition, this works on a sitcom, does it mean I just changed my mind about Pain Olympics in general? Does it mean I am about to offer sign ups for the blog cage tournament of doom? Hell, NO! What I now think is that the show creators have managed to find one of a fairly small set of circumstances where something like this might work. Which is why, I suppose, they are getting the big bucks.  I think that it works partially because the characters have suffered different losses, not all of them losses of people, and not even all of them losses of another being. As such, when they are showing off their wounds, they are presenting the general outlines of the wound, not measuring, if you will, the depth and circumference of the wound. In contrast, it seems to me that doing a thing like this in a community of people whose wounds are all the same general shape is a very bad idea. Mostly because comparing details of losses where the relationship between the lost and the bereaved is the same takes us perilously close to deciding whose lost loved one mattered more. And that is still something I can't abide.

The other reason why I think it works on the show, is that the "tournament" takes place within a defined period of time, in a small real-life community. In other words, it happens in defined space within a defined period of time. Live people interacting, in competitive spirit, yes, but also with compassion and humor and understanding, with other live people, most of whom they have known for some time. This is not something that is easy to ensure happening on the internet. People wonder by, reading the posts they stumble on. When we as readers react to an entry on a blog, something written in a particular time and influenced by particular events and emotions, perhaps even in response to particular events, for us what is said is very immediate, right now. But the person who said it may have changed their mind, may have even changed some as a person, and certainly may simply not be in a headspace to "go there," to engage the topic again. Which, if the post in question is of the Pain Olympics variety, might just leave a late comer reader feeling belittled in their loss instead of supported in good humor.

So I am still a firm "no" on unleashing Pain Olympics into the wild, but a cautious "yes, for now" on the new show. I hope, for their sake and for ours (because wouldn't it be nice to have a popular culture education on grief?) that they can sustain the tight-rope balancing act of being authentic and entertaining at the same time. And I really hope the weird guy's alone vignette doesn't mean he's a bereaved father. Not because we don't need to be represented, and not because bad things don't happen to weird people, but because if I had my druthers, I'd wish for us to be represented by someone painfully "normal" and average.

So what do you think? Have you seen the show? Will you? Are there other popular culture representations of grief in general or perinatal bereavement in particular that you find either particularly authentic or particularly offensively cartoonish?

The Ambassador

I had that call again.

A friend of a friend. Someone’s brother. A former colleague.

I shake my fist at Jimmy Stewart, because every time my phone rings an angel gets its wings, but it doesn’t seem so uplifting when the angel is a dead baby and you don’t believe in angels anyway.

I hope you don’t mind me getting in touch, I just didn’t know what to do and I thought of you immediately…

It reminds me that I am a denizen of a bruised nation with a missing population. We stand invisibly united under a knitted, never-used flag.

We did not choose to come here. We cannot leave, cannot flee. Yet we are dispersed. Grieving refugees. Missing a home we hardly built, earth we barely touched.

Another family crosses our border and we do not bring them casseroles. Or, y’know, we may bring them a casserole, but really we’re giving them some kind of painfully extended metaphor for what the next weeks/ months/ years will be. There is no silver lining, so perhaps a free casserole is the best we can hope for.

I feel like I should stand on something and proclaim:

Friends, Mourners, Undiscovered Countrymen…

But no one here wants a rousing speech, or maybe you do. I don’t know. We do not speak a common language, or share common customs. We hold different politics, different faiths, different aesthetics. We are connected, but only nominally. In reality, babylost covers an extraordinary diversity of experience. There are so many ways for babies to die. It still shocks me.

The friend of a friend. Someone’s brother. The former colleague.

I do not know what they want. I barely know what I want, truthfully. I want to make some weak joke: …something something DIPLOMATIC IMMUNITY, am I right folks??!!

I am an undeserving emissary, chosen by default.

Yet I am your Ambassador.

And you are mine.

Have you encounterd a babylost ambassador? Someone who had walked the path before you and helped you navigate your grief? Who are they and what did they do that helped?

ghost town

I lost my daughter then I lost my friends. Not simply lost them. It was more like they drove me out into the country and told me to go run out in the woods for a while, they waited by the car.

"There, Angie, check out behind that big tree. A little further away. There is something shiny there. It is the internet and there are people on there whose babies died too."

"Over here? I don't see it."

"Just a little further. Go on now. Be good. I loved you once."

"Okay. I love you too."

And I watched their license plate become illegible in the distance. I walked back to town, determined to understand, only to find that they moved without a forwarding address. So, I suppose, they lost me.

photo by Denise ~*~.

Villages of friends were gone. I walk into the ghost towns of my past, sidle up to the bar. There is nothing left. I am not part of their tribe any longer. I slam the empty bottle of the long bar. They were drinking buddies, after all, not friends. For years, it made me angry. It made me angry that my daughter died and then I kept losing more and more and more until it was just me.

When it was just me, I saw you. And you. And you. And you. And you is beautiful and amazing. I told you all about the pain of losing friendships, and my daughter, and raising a daughter and every little thing about this experience. I listened to you talk about it too. We suddenly had a little boom town of the babylost. I felt normal.

Normal was all I ever wanted.

+++

Everything about my life changed after Lucia died, even though it looked exactly the same. And I feel attached to all those things I once was, like grape vines winding around the withered parts of me--my arrogance, my lightness of being, my inappropriate anger, my bravado, my aloofness, my old friendships, the confidence I had in my body. I cut the shoots, understanding that those bits of me are dead, but the tentacles grow back, clutching dearly again to something already gone. (I fear it takes the nutrients of my thriving, beautiful bits.)

In the weeks after, it became abundantly clear that I had no idea how to feel anything but anger and longing about her death. I was not emotionally equipped to handle the death of my daughter, except I had to handle it. It was awkward and painful. I clumsily talked to people, until I just couldn't do it anymore. I drank heavily. I watched the same safe comedies over and over. I was afraid to call friends and cry. I thought I would never stop--hysterical, uncontrolled tears. Keening. Misplaced anger. Blame. Fear. Blubbering. I heard the conversation before I uttered a word.

If I say I want to die now, you won't understand. You will think I am suicidal. You will call the authorities. You will take my only living child. I just don't know how to live this life without her. I don't know how to shop for groceries now that she is dead. I don't know how to make small talk. I don't know how to watch Law & Order. I don't know how to do anything.

And so, thinking they understood that about me, I expected them to call me. Surely someone calling a grieving mother would know what they signed up for if they called. It felt rude to call someone, even a very good friend, just to cry, even though, ironically, I longed for someone to call me in the early months and cry. I just wanted to be needed, not underestimated. I had once a month calls from a few friends, which were like tall cool glasses of water in a drought. I never cried during those conversations. I was almost maniacally positive about how fine I was doing. Then those petered away too. Mostly, it was silence broken by long, drunken tirade emails. 

Left to my own devices, I behaved badly. Oh, I behaved graciously here and there, but mostly I was angry, chaotic, impulsive, and afraid, lashing out at unsuspecting strangers in markets and yoga studios. The crying stopped eventually. The misplaced anger at other people slowed. I quit drinking. I figured out how to shop, and chitchat, and watch crime dramas. I learned how to feel all the emotions of grief, not just the loudest ones. I went to baby showers, and parties, and stopped expecting, or wanting, anything Lucia-related to be discussed. That took time, but it happened. The grief fog lifted. 

Being the me I was and grieving was fucking torture. So I changed stuff about me, like who I trust and when I trust and what I trust and how much I trust. I changed what I give and what I take and what I give personally and what I take personally. I changed what I complain about and what I don't.

I couldn't call those old friends after I changed. I didn't know what to say to them anymore. I wasn't over her death. I would never be over her death. But I learned to live with it. Time had moved forward. I moved forward. They moved forward. I missed so much, and they missed so much. Not many people stepped up. Those that did, stepped away eventually. I never called them to ask about the thing I should have been asking about--birthdays, illnesses, new jobs, old jobs, pets, boyfriends, girlfriends, new babies. When I came to fully understand that my daughter was never coming back, I came to understand that neither were my friends. I don't blame them anymore. I was a terrible friend--grieving and overly sensitive, impetuous and distant. I didn't and still do not understand how I could have been any better. I did the absolute best I could with who I was. Emotionally, I was stunted and small. And maybe they were too.

+++

I wrote because I didn't know what else to do with this ache in me. I couldn't speak it to my closest friends, so I wrote her birth story. I posted it on the internet. I thought that was everything I knew about her. I put it on a blog. Maybe someone will read it, maybe someone will understand. It was a flare shot into the night. Or a campfire, as we say around here.

Then I wrote about going to the market. Suddenly, people were there. Other grieving parents. I read about tears in the produce department. I wrote about my fears and anxieties and loves and revelations. I wrote like no one but babylost folk were reading, and sometimes, I wrote like they weren't even reading. I wrote with a kind of freedom that is both naive and slightly endearing. I found myself in the community I longed for since birth--supportive, honest, loving, compassionate. I made friends who appreciated my dark side, as well as the other parts of me. And I theirs. I had found normal.

Writing publicly about grief and pain and the darker parts of losing your child remains both incredibly comforting and absolutely terrifying. In most of my friendships that ended, the complaints centered around my blog and writing. My friends didn't like grieving, complaining, sad, disappointed Angie. 

You wrote about the friends! How unforgivable! You made it sound like we are terrible people! You write about your dead baby every week! That's too much! You make art and sell it! It is about the death of your baby! How terrible! How gauche! Everyone is sick of everything BABYLOST! It is unhealthy! It is wrong! We can't have it!

I never expected any friends to read my blog. It had nothing to offer them. It certainly had nothing to offer me for them to read my innermost, ugliest thoughts about the death of my daughter. I never imagined they would read, but they did.

I wrote because I had no idea what else to do. I wrote because my friends didn't call, and I couldn't call them. I wrote because I needed a community, to feel normal, to feel worthy of compassion. But it came with a steep price. 

Because I lost Lucia, I found something of myself tangled in the tumbleweeds of my emotional and physical defects. After everyone left, something dark and ego-filled, sensitive and critical, drunk and capable of sobriety, redemption, and forgiveness emerged. I forgive those friends, not because they have made amends, but because I have. I had to forgive my humanness. In doing that, I had to forgive theirs. I was grieving the death of my daughter. I did the best I could, and so did they. I sit with who I am now, a human being worthy of compassion. You taught me that. Thank you.

How have your friendships been affected since the death of your baby(ies)? Do you have a blog, or on-line presence? Do your before-friends know about your on-line community of babylost? Do they read your blog, or participate in your forums? How do they feel about it? How have you felt about being public, or not so public? Anonymous?