a home for my sorrow

We are honored to have Aurelia of Losing Chiara as a guest writer today. Aurelia is a mother of 3 children, 2 living. Her daughter Chiara was born still in August 2012. She writes, "22 months into this grief I find myself still searching for ways to incorporate her into my life, to honor her memory."

 

A cemetery is a good place

to take your sorrow.

Even if the one you grieve is not buried there,

you are still in such good company.

 

Monuments to lives and loves all around.

Widowers walking the grounds for exercise,

and to be close to their wives.

 

I walk past the graves,

read the names, do the math.

I am looking for the children,

the babies.

 

Some are all grouped together in the baby garden.

Chimes and whirlygigs flying in the breeze.

Tiny stones,

most with just one date on them,

a birth and death day.

 

Some are within large family plots,

“to our sweet angel Silvio”

“our daughter Lizzie”

“our beloved baby”

now all cradled in the earth with grandparents, aunts, uncles.

 

Some are not named, an inscription on a bench for all

“children known only to God”.

 

And what of you, my darling girl?

Your ashes reside on a shelf in my house,

but I feel you in these places.

I carry you, my love for you, my sorrow for you,

everywhere.


Here in the cemetery where I learned to ride my bicycle as a child,

where my grandparents and great-grandparents are buried,

my sorrow feels at home.


Do you visit cemeteries? Do you find any comfort there, whether or not your baby is buried in one? Are there other places where your sorrow feels at home, places outside your home where you can be at present with your grief?

 

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?