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?

glass words

I am so honored to welcome this month's guest writer. Merry's support and love permeates all the nooks and crannies of this community.  Merry describes herself as a "38 year old mother of four girls who came before and then Freddie who was born and didn't breathe but then did and lived for eleven days in SCBU before dying of pneumonia. In January this year we had Ben, our rainbow baby born 21 months after Freddie died." Merry writes at Patch of Puddles.

 

When I say the words, they remind me of the twinkling, polished nuggets of pretty glass that surround his memorial tree. Smooth, splendid, finished, perfect.

"He's their second brother. We had another little boy but he died when he was very young."

"They did have another brother but we didn't get to bring him home."

"We had another one who spent some time in SCBU. No, he didn't come home unfortunately."

"I've had six children... I have five children."

"He is number six. I have four girls at home."

Sometimes I phrase it so I don't have to say the words. Their brother died. My baby died. Our son died.

I've perfected the words so they skitter around like handfuls of decorative glass pebbles held high and dropped, bouncing in the sunlight.

photo by dalvenjah.


I'm guilty of an art of careful word architecture that parcels up our family pain and speaks it in a way that acknowledges but protects. I sometimes worry I phrase it in a way that make people think we weren't allowed to keep him rather than had him brutally taken. By the time I spit those artfully shaped words out they have been shaped to make them glisten and slide from my lips, not rip . I'm guilty of trying to make it palatable. I worry people think it means I have got over it.

I worry he hears.

+++

The world at large says words back at me that my world in miniature says politely.

"At least you have the others."

"The girls must have helped you get through."

"Thank goodness you didn't have to bring him home for a while. At least you never got to know him before he died."

As if the eleven days bent over his cot, praying to every god I don't believe in to grant a miracle didn't count. As if having four healthy children makes a difference to the pain of losing one. As if, at the birth of a good to go child, someone could say "Do you mind if we keep him and you just pop off home?" and the answer would be "Well of course, it's not like I know him yet!" As if, knowing his sisters, loving them deeply, makes his loss more bearable and not the yawning, gripping pain of knowing exactly how wonderful and beautiful a person we lost.

"It must be so much easier to cope with losing Freddie now that you have Ben."

Out pops a pebble, a shiny glass pebble.

"Yes, it helps. Of course it helps." Treading a path neatly between the socially acceptable and my listening daughters hearing and thinking he became expendable and forgotten. I break my teeth on another palatable pebble.

+++

It's because of my daughters that I had to give up fighting for Freddie. With disability and long term care looming hard and fast, I vomited up the words that we had to let him go. Losing him was not better because we had living children, it was made bitter and bile filled by the knowledge that I could ruin six lives by fighting for him or let him go and save us all.

"It's time to stop."

There was nothing polished about those words, they were molten and then jagged and my cheeks and tongue and throat are throbbing and scarring still.

Don't let anyone tell you that having other children makes it better. Different, but not better.

+++

Just 30 minutes holding the body of my son without wire or tubes.

With the image of my frightened and barely whole children waiting for news burned into my head, I watched my son die, packed my bag and went home to comfort them, to break the news, thank the people who cared for them - and have lunch.

Home to an eleven year old standing at the top of the stairs and sobbing "Is he dead? It's not fair."

Home to a ten year old who took one look at our faces and turned and walked away, the brother she had longed for gone before she ever held him. She never let herself cry.

Home to a seven year old who screamed "You shouldn't have had him! You had too many children already! Have other one now!"

Home to a five year old already shattered to pieces by her parents having been absent for eleven days, who had kissed the bump every night and made him a space in her heart and loved him as only a five year old can and who sat in our arms and seemed to understand and two hours later asked when we would go to get him and bring him home.

Who asked repeatedly, "Is he still alive really?"

All our grief, laid out and raw in the faces of the children we loved. Our children dragged through the splintering, wounding carnage alongside us.

My children, crumpled and bewildered and somehow supposed to filled the gaping hole in my heart, who listened and watched my every move, weighed up my love, weighed up my grief, looked to see if I would last. Looked to see if I could still be mummy.

Home to gymnastics sessions and maths that needed doing and laundry and presents waiting to be given to a new baby brother. I spent the first night after his death not in my bed and my husbands arms, but on a mattress on the floor of a pink bedroom, each of us with shell shocked girl lying either side of us. There was no hiding in a darkened room for me. There was no going to pieces. The greatest betrayal was that we had to put Freddie neatly away ourselves and carry on - go forward - to keep our living children safe.

Life goes on.

Don't let anyone tell you it makes it okay if the babylost have other children.

Sometimes what hurts most of all is accepting I was one of the luckiest of the unlucky people. That my pain is a little more bearable because of my children. But that my pain is magnified ten thousandfold by seeing them hurt.

+++

When I think I can't be any more sad, I hear them speaking pebbles. Polished, perfect pebbles that drop and scatter as they dance the linguistic dance of having two brothers but only one that anyone can see.

That is a special kind of heartbreak.

Look what I did to my children. I wanted another baby, who died, and I made my children learn to speak the language of the grief stricken. I daren't look inside their mouths. I am too frightened to see if there are scars from the glass. I'm horrified, but happier, to see the pebbles.

 

How do you use word architecture when speaking to others about your child's (or children's) death? Is there one phrase you use consistently? Do you use different words or phrases depending on if you are talking to a stranger, the casual acquaintance, close friend or family member? If you have older children, how to teach them to talk of their sibling's death? Do you overhear them mirroring your words?  What kinds of things do you overhear them saying about death and grief and their family since the death of their sibling?

To The Pain

I don't have a picture of Silas handy.  I know I can go to my blog and look at the photo we have posted there, and we have a framed memorial with his image and footprint and handprint and a photo of his name in the sand.  In the drawer next to my bed, I keep his ashes in a small orange jar with a cork in the top.  Lu got it for me for other reasons years ago, but when we needed to transport a portion of his remaining physical form to the memorial site in the park up the street, that's what I had and that's what I used, and that's where I keep that part of him.

I have a tattoo on my arm that is the most present aspect of Silas in my life.  Like him it is part of me, forever.

The ink in my skin has become the perfect metaphor of my mental picture of him.  Long ago he ceased to be a person and transformed into a force.  His energy blows at my soul and turns in me in ways I never expected.  All these years later and I can feel his brief life exerting its pressure on my heart, my consciousness, my view of the world.

The exact same white EMT truck just blew past my window as loud and terrifying as the day he was born. I dread where it is going.  That is Silas as real and true as anything I can conjure.

When I hear of a new pregnancy, when I see women round with life, when someone unknowing tells me about plans for the perfect birth experience I feel Silas in my nervous system.  My thoughts and memories and ideas of "him" are transcribed into the way I feel the world in a terrible, tangible, painful way.  And I love it.

Those sensations: the feel of the tattoo under my skin, my terror for those beautiful mothers-to-hopefully-be, the raw reality of a toddler boy exactly his age, I need them.

Silas can't be anything for me himself.  He doesn't have the voice to speak to me about his needs and wants, doesn't have the face to draw my gaze and steal my heart.  I don't know anything about who he would have been, but I can feel in those grievous sensations all the hopes and expectations I had for both of us, and I love them.  After all, those brutal sensations are all I have to keep my connection to the son I never knew.  Funny huh?  No, not really but no one else gets how fucked up this all gets besides us, the ones that are in the midst of this furnace that never stops burning.

We aim to have a Glow here in the Woods, for people to find when they are lost.  The part we don't often mention is that we don't just use this fire for light and warmth.  We use it to sear our souls over and over again, to touch the pain and drink it deep.  When I saw his ashes in my drawer only moments ago while looking for some random object it generated a sensation in my body that few people know.

This, this is what I have.  This is the most and all that I have.  This is more than what I have because his ashes are years older than he ever was.  That little jar.  That little life.  The wrongness of a life snapped off so short is gut-wrenching and violently wrong, and that's my life, his life.  So the sound that came out of my face wasn't a laugh or a grunt or a groan, but something all the way in between.  It was a guttural acknowledgement of how fucking awful life can be, and how much I miss his life never-to-be, and how little I can do about any of it.

I don't have him or a picture of him handy, but I have so much more of him in and with and around me than anyone would ever know.  My grief for his lost life burns bright in my soul and I love hating how much it hurts.  I step right up to the moments when it hurts the most because that's how I can feel him in the most visceral, literal way.  His absence burns me to a crisp, and I relish in the charred memories and the hopes made of smoke and tears.

How do deal with the pain when your lost child or children is suddenly present in your life?  Do you seek out experiences that will hurt, in order to feel them close?  Do you grieve in secret, special, private ways?  How has your view of grief and pain changed?

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? 

 

Indelible

Who are we, now? Are we still ourselves, the people other people know, except, you know, grieving? Or are we changed forever, marked in a way that changes who we are fundamentally? Is there a middle path, a third option? I'd like to think there is, mostly because that is how I feel-- I am still me, but I am also marked.

I've often wanted to be marked in a physical sense too. To underscore, I guess. Sometimes also so that others could see-- though this desire is much less prominent these days, I've also from time to time wanted to make sure that others couldn't ignore my son. And a physical mark would probably make that somewhat harder to do. There are always the irreverent t-shirts, ones we've all fantasized about making and wearing. But fun as those would be, they are not permanent, and not exactly changes to our physical self.

This is likely why I am always at rapt attention when bereaved parents discuss their memorial tattoos. Some of these are true works of art, with layers of meaning and images in images. I wish I had the creativity to design something like this. But even then, I am so culturally conditioned not to get a tattoo myself (it's kind of a big Jewish deal, concentration camps and all) that I can't imagine breaking with that. So I admire the heartbreakingly beautiful work of others, and I think about how you really need to know the story already to see the entire story in the image. Which means that these are really for the parent, and not so much for the passers by.

So my body remains unchanged, except for what life does to it. And yet, I feel changed, I feel marked. I realize, too, that some of these changes are about my part of the story, and some are about A's, or rather about me reacting to his part. For example, the way pregnancy after is different, that's about me. That part is about what it feels like to be a mother whose child, whose baby, dies. And who then chooses to chance the fear and the anxiety and all the attendant crazy in hopes that another child might live.

On the other hand, the fact that I can't make myself fill out the part of my online profile with a cool local toy store that asks for children's birthdays because it numbers said children? That, I believe, is about him. It's about me knowing in my bones that he was here, and so I can't list the son who was born after him as "child 2." But at the same time I can't very well list the birthday of a dead kid under "child 2," not least of all because the store will then send me gift suggestions for him based on the age he should be for his birthday and various commonly celebrated holidays. And that? Might just break my heart.

So I am changed. But am I marked? Recently, I've come to believe that I am. Not in a way that others can see easily. The most striking of these little internal markings is the reaction I have to a very everyday thing-- supermarkets. Some of the food stores where I shop have flower sections right by the door. And I noticed that every time my eye falls on the fresh cut bounty, the first thought, and I mean the very first thought that enters my mind is essentially about which of the bunches on display I could take to the cemetery. This is more than five years later, so I think it's safe to say that this is not a passing thing. It is, in fact, so much a part of me now, so much not out of the ordinary for me, that it took me all this time just to notice. And I don't even go to the cemetery much now, so I think of choosing flowers much more than I actually do that.

When I did notice, it made me feel only a little sad. Mostly, mostly I think I was and am glad to have this. This change is no less indelible than the tattoo ink, even if less obvious to anyone else. In a weird way it's just nice to know that I carry my son with me all the time.

 

Are you marked? What are your markings and how do you feel about them? Are you glad to have them? Or would you rather not step on grief land mines as you navigate life?