What They Say

Today's post isn't going to be lyrical or beautiful.  It's not going to uplift you or share a new perspective on the terrible tragedy of losing a baby.  And it also contains a fair bit of swearing so be forewarned.  

Today's post is about other people, the ones that have all their kids and don't know one single thing about how to talk to us, how to behave like a true friend, how to navigate in our dark depths and instead say incredibly stupid and insensitive things without using their heart or brain before opening their mouths.  So, let's start with my favorite:

"Well, everything happens for a reason."

What I want to say & do in reply:

Oh really?  It does?  So when I wind up my arm and clench it into a fist and punch that person directly in their disgusting, thoughtless mouth, I can just chalk it up to 'everything happening for a reason?'  What a relief!  I thought the Universe was just random, brutal and unforgiving, but here you are with your deep wisdom born of nothing, telling me I can do whatever the fuck I want because hey!  It all happens for a reason!  And the reason you are flat on your back from my knuckle sandwich is because you're an unthinking, insensitive ass.

What I say instead:

I disagree.  There could never be a good reason for my son dying.  What you are saying is very offensive to me, and I would appreciate it if you would keep those sentiments to yourself.  I know you're just trying to help, but it's not and you aren't and please, please stop. (or else, see above, I say with my eyes)

"Whatever doesn't kill you makes you stronger."

What I want to say:

Hmmm, let's see, no.  Not true.  Some things that don't kill you make you weak and fragile and bitter and sad.  Some things, like losing your child before they had a chance to make a breath or live a day, make you hollow and desolate and open your eyes to how bad life can get.  The strength I relied upon to live through that terrible experience came from who I was before he died.  His death did nothing but rip the naivety and innocence from my soul and lay the world bare in all its brutal viciousness.

What I say instead:

My son dying didn't make me stronger.  It made me nearly dead myself, and I'm not stronger for his death. I would have been made stronger by getting to be his father. What you are saying is painfully insensitive.  Please stop.

"At least you're young, you can have another."

What I want to say:

Wonderful!  Thank you so much for being a fucking idiot.  Because as you know all kids are replaceable. One breaks or dies, just go out and pick up another one.  How about this?  How about I take one of your four kids and raise it as mine?  After all, you've got plenty!  Spare one for someone who misplaced theirs when they fucking died.  How about it?  Since you're such a dumbass you will probably raise awful children anyway.

What I say instead:

Nothing.  I say nothing to those people.  I just look at them for a moment, shake my head and walk away.

"God works in mysterious ways."

What I want to say:

Fuck you.  Get out of my house.

What I say instead:

That's the stupidest thing I've ever heard.  If this is God's mysterious way of teaching me some kind of lesson, He/She/It can go fuck themselves.

"Is he your first?"

What I want to say:

Why do you want to know?  Or are you just asking things without thinking about it?  Do you really want to know about my first, about how he died?  About how we are still devastated by his absence?  About all our hopes for him and us dashed against the black shards of death?  Or are you just some blissfully ignorant stranger who can't keep their mouth shut and don't really give one fuck about us at all?  Ah, I thought so.

What I say instead:

No, our first son died due to complications during birth.  Then I just look at them while they crumble into despair and I think to myself be careful what you ask people, they just might tell you the truth.

~~~~~~~~~~~~~~

What insane, awful and horrific things have people said to you when they learn that your child died?  Let's rage on this together with the only people that know the truth and feel a little better by getting it all out for once.

The Most

When do you miss him the most? Lu asked me last night.

"Alone in the car," I replied.

When I can't listen to the radio for another second and I'm tired of all the music I have and I'm just driving along quietly and my mind starts to turn, I feel him not-there so powerfully it makes me choke.

In the first months and years after he died driving alone in the car was when I cried the most.  A new story about pregnancy, or that perfectly placed Modest Mouse tune, it would annihilate me and the car was the perfect capsule to scream as loud as I needed.

It is also why I will never, ever put up one of those fucking Baby On Board signs.  I wasn't planning on running you off the road, but since you're rubbing it in my face maybe I should!?  Strange that they don't make a dead baby sticker to add to those insanely annoying sticker families, either.  Also, get out of the fast lane and learn how to drive!  My typical rant makes Lu laugh.

What about you? I asked her, serious again.

"When we're around other kids, friend's kids, that would have been the same age as him.  I always miss him, but that's when it's the worst."

Yeah, I agreed.  Absolutely.

Three year old boys just becoming little guys with their dads running around the yard or walking down the street as alive and independent as only three year olds can be.  I remember pieces of what it was like to be that age, but I will have no memories of Silas at this age.  He vanishes to shadow every time I glance toward him.

In the evening, alone, I feel more alone for missing him, for never knowing him.  The constructs and inventions to heal a day are insufficient to make sense of why we can't share the world with him.

His death added a bone in my body lengthwise through my heart, sliced my liver in two, blew my innocent vision to smithereens, twisted my ankles unwalkable, trapped my breath in poisoned lungs.  I'm not the same person I was before Silas and that kinda sucks 'cause I kinda liked who I was.

More importantly, I was very much looking forward to who Silas was going to transform me into. (insert bitter laughter)

I am transformed absolutely but not at all how I wanted.

To be so wrong about how I thought things were going to go is profoundly undermining. What else will I get wrong?  What other traumas await down the road?  How can I trust myself to make any choices, to have any expectations about the future when his absence is devastating proof of how utterly foolish I could be?

Even worse is Silas's transformation from life to death.  From potential to memory with barely a stop in between.  From ours here to love and cherish and hold, to dust we cannot hug.

A thin, young, sliver of tree quivers in the evening breeze, under the stars of his name and they remind me silently of the never-ending-quiet blasting from his vanished lungs.

When do we miss him the most?  

Always we reply in unison.  Always.

~~~~~~~~~~~~~~~~~~~

Are there certain instances or particular experiences that most remind you of your lost child or children?  Has that changed over time?  Are there new moments that catch you by surprise?

What It Feels Like To Almost Have A Child After Losing A Child

Two weeks from today, on May 7, around 12:30pm in Los Angeles, we are scheduled to meet our third child, a boy, who if anything like his older sisters, will be long and thick and blue eyed and full of hair.

We have a name picked out for him. We have a few things ready for his arrival; an old car seat, some hand me down articles of clothing, an aqua colored swaddle blanket and a scattering of other necessities, like baby soap and a sealed bottle of whiskey. Barring any unforeseen calamity or early entrance, he will come into the world after spending thirty-eight and a half weeks inside his Mother, the same amount of time his sister spent in utero before dying.

Seventy-five weeks of pregnancy has come down to this.

+++

We are dancing more and more these days. My three year old and I run around the house singing wildly off key to the vibrations of Florence + The Machine, cranking the volume during the “loud parts,” as Stella refers to them, and pumping our fists and spinning in circles and group dancing with Momma, which involves an awkward three person and one belly swaying hug.

We have been doing this sort of tribal dance ever since Margot died. It was always a brief respite from the agonizing grief, a tangible way for us to contrast the sadness surrounding Stella’s life with some joy. But something feels different now. As the song ends and we throw ourselves onto the couch in exhaustion, the sadness that once lingered after the dancing is now replaced with anticipation, the light at the end of another long pregnancy tunnel, the hopeful gift of a son, out of the ashes of his sister.

+++

I have been growing a beard since we entered the third trimester because I don’t know what else to do for my son in utero, because it’s the only outward sign of hope I can think of, because the simple act of not shaving feels like something I have control over. It is thick and black and surprisingly vigorous after two months. And it’s mostly awful looking, something my partner says “doesn’t look bad or good.” But it’s there, growing simultaneously with my son, exuding love and hope every time I pick food out of my mustache or my daughter yanks at it in laughter or I itch it at work or gently pull at it while I’m thinking or reading.

+++

Thirteen months and one day ago, as my partner bled and bled with no clots in sight, we were twenty minutes away from a hysterectomy.

Thirty-six and a half weeks ago we got lucky, damn lucky, that the cells of a tiny egg and a tiny sperm entered into a union that has, up to this point, stayed the course. There is gratefulness in abundance.



Mostly though, there is this inescapable feeling like our lives are hanging in the balance, like we’re standing on the edge of a cliff, overlooking a rugged coastline, waiting to be pulled back or kicked off the ledge.

I don’t know how we could go through this again.

I really, really, don’t know how we could go through this again.  

It’s damn near impossible to keep myself from looking over the cliff, from imagining the free fall should this little boy not make it. The fear, which introduced itself early on in the pregnancy, as if on cue, has successfully set up iron gates around my hopeful heart, holding me in a perpetual state of doubt, my gaze nearly fixed on the rocky coastline below. The emergency run to labor and delivery at thirty weeks didn’t help. Nor have the poor non-stress numbers, the abnormal blood work, or the two dozen times we had to get the doppler out to see if he was still alive. The only relief from the fear and worry is that it’s persistence has become commonplace.

And then there is the hope. Hope that this baby will live, and keep living. Hope that I will hold him in my arms and look into his eyes and tell him that he is my favorite boy in all the world. Hope that I will get to introduce my three year old to her live sibling, to see the two of them together, a dream of such vivid beauty I can hardly even think about it.

Hope that in two weeks time, we will pick up what’s left of ourselves, step back from the cliff, turn around and walk back towards home.

___________

If you have had a subsequent pregnancy, what was your experience like? If you haven’t had a subsequent pregnancy, how does it feel to read about other members of the baby loss community who are pregnant? Is it hopeful? Diffiicult?

tattered and faint

The plastic hospital fork felt slippery in my latex-covered hand as I fed my mother unpleasant mashed potatoes.  She hated the taste and that she had to be fed and I hated having to do it, but neither of us had a choice in the matter.  MS is a brutal disease and this most recent trip to the hospital was as enraging and scary for her as it was brutally sad and awful for me.  But my presence made her feel better, and I would do anything I could to help her heal enough to get back home.

I ate alone that afternoon before I went in to see her and I could feel my sadness as a physical presence in my body.  Silas's death was not an inoculation from grief.  I learned many things from that experience but one of the most important was that the only way through it is straight ahead.  I also learned that silence and aloneness and grief are utterly tied together for me.

Sitting in that restaurant yesterday it felt like an old familiar poison coursing through my veins. I felt more than just alone.  I felt a complete Otherness, like an alien in my own skin, totally cut off and unlike anyone else in the establishment.  I also knew I appeared absolutely normal and that no one there would ever suspect my blood had turned sluggish and thick, that my guts had a hole in them bored straight to Hell, that my heart was clenched like an angry, angry fist and that my soul was tattered and faint once again.

Silas's death was sudden and impossible.  That perfect pregnancy shattered in an instant and I felt cut to pieces.  My mother's sickness is a slow grind of failings and infections but the shock of a loved one in the hospital and in mortal peril is equally devastating in much the same way.  I guess that is what happens when hope is revealed to be nothing more than a wish, and that health and life are revealed as fleeting and delicate.

My mother may yet heal enough to go back home, but she won't walk out of the hospital.  She has not been able to walk in years.  She may battle off this latest infection and be granted a few more years but it is impossible to know.  It is terrible, but I cannot help but look at her and know that someday, someday sooner rather than later, she won't be here anymore.  It turns out that despite the years of crying after losing Silas, that I have not used up my life's allotment of tears.

Sometimes my grief is all-encompassing, transforming the world around me into a pale, featureless void that echoes the endless blackness within.  Sometimes it compresses into that angry knot gripping my heart so that I can breath and eat and live but only with great effort.  Every now and then when things are particularly good, that sadness is reduced to a tiny, dense speck that I can almost overlook except that it is so small and compacted and ridiculously heavy that nothing can move it from the core of my being.

I can't make it be anything else than what it is, though, and the only way to endure is to breath as deeply as I can, let the pain wash through me as tears and shit and rage, and try to force another tasteless bite of food into my body before I go and help my mother do the same.  Her incredible strength and will to live has kept her going for thirty-eight long years with MS.  Her example was what gave me the strength to battle through the worst of my pain when Silas died, and now I have to be strong for her, too.  I know I can do it because I've already done it, because she showed me how.  I just hope I have enough for all of us.

How has the loss of your child or children altered your sense of sadness and grief?  Have you had to deal with losing other people in your life since you lost your child?  How was that grief different or similar?  What does your grief feel like in your body?

Pale Blue Dot

See the faint dot between the white lines? That's planet earth. And it makes me wonder about my dead baby.

Just before Voyager 1 ended it's primary mission and blasted off towards the outer reaches of the Solar System, it spun around and snapped a photo of earth, some three and a half billion miles away. This photo was taken in 1990 (and the Voyager, incredulously, is still going).

On the one hand, of course, the sheer insignificance of the earth, and our lives, in the grand scheme of the solar system is sobering. There appears to be a bigger story being written, cosmic and infinite in size, and one that will be downright impossible to ever understand. The notion that any of us, with such finite minds and limited understanding, could have anything figured out seems almost foolish. As astronomer Carl Sagan pointed out, “Our posturings, our imagined self-importance, the delusion that we have some privileged position in the universe, are challenged by this point of pale light. Our planet is a lonely speck in the great enveloping cosmic dark.”

From this vantage point of earth, everything about our significance is lost. The pain and joy and suffering and pleasures of our earthly human existence are all invisible. From out here looking in, our spinning earth boils down to life and death. The collective species lives and dies and enters the earth. End of story.

Insert my Margot into this picture of earth and you can barely discern any difference between her and the rest of the species. She lived, she died. She suffered the same fate as everyone else, and from this far away, the difference between her life and her great, great grandmother’s life is a mere blip in time, the same beginning, the same end. There is no tragedy from this vantage point, no suffering, no feeling of loss.

I am insignificant. She is insignificant. But at least we are together, tiny specks on a tiny speck with no Horton looking out for us. And there is some peace in this reality, some science comfort.

The other side of this image, however, reveals what a crazy, far-fetched, inconceivable fucking miracle it is that we even exist at all. The notion that the universe aligned in just the precise way for the species to make their grand entrance on planet earth, and for the species to continue to evolve over the millennia, and to evolve in such a way that our brains allow us the ability to think and feel and experience this little speck on which we live, is damn well breathtaking.

It’s here where I feel the tragedy of Margot June more deeply than ever. Her own miraculous story was cut short, without ever getting to experience this cosmic mystery of life on earth.  

I used to feel so sorry for my family, for our collective broken hearts, for the life we didn’t ask for, for the loneliness of losing a child. For her mother, whose waisted milk came in and dripped aimlessly down her flesh, who carried her for thirty-nine long weeks, who felt this more than anyone; for her sister, who kissed her in utero and spoke of her constantly, who always got this euphoric look in her eye when we described what being a sister meant for her; for myself and the broken dream of raising two girls, holding them both in my arms as we navigated life together.

Now days I mostly just feel sorry for her.

For in this image, I’m reminded of the revelation that she was, and all that was waiting for her on the other side of the womb. I’m heartbroken she missed out on the complexities of life on earth, no matter how insignificant or miraculous our pale blue dot is.

How does this image of planet earth make you feel in regards to your missing children? Does it bring peace or despair or a mix of both? Does science play a role in your grief? As the time has dragged on without your children, have you felt more or less sorry for yourselves?

One blushing shame, another white despair

We are in a cafe. I blush and stutter. I look through my eyelashes at our neighbours, laughing into their lattes. I murmur, fearing their ears.

We are at my house. I breathe in and unseal my lips in a tiny gesture of anticipation. We are friends, confidantes. You are unshockable in the presence of my grief and rage. But now I am aware of the couch we sit on, the bedrooms above us.

So perhaps it is better that we are in neither of those places. You are there. I am here. This is silent noise. You can adjust your features so that they appear neutral, impenetrable. No one need know that this is what you’re reading. Unless you blush too.

Because here is the thing, the topic, the theme, the issue, the matter at hand. Here is the subject of this post. It’s... it’s... it’s... sex after loss and there is no pretty or dainty or literary way to say it other than that:

Sex after loss.

And what a complicated and difficult subject to address. In grief you yearn. You yearn for a little body, a milky mouth, a tiny foot in the palm of your hand. Is there room for that other yearn, that other want? To need, to desire: they have different meanings now. And now sex becomes about another baby, or not another baby; about bodies that don’t do what they’re supposed to. Bodies mean pain, or sick, or tired. Bodies are small and covered in wires. Bodies are still and cold. Bodies are not the colour of your lover’s skin, but mottled and blue.

Some people are drawn together and some are wrenched apart.

We were wrenched apart, but still we came together. We wanted our baby and so we were naked in our nakedness. And so another baby came. But that is not a given for our kind. There is no guarantee of fertility or of the end result. The end result: the one that seemed so certain to me all those years ago as I stomped up the stairs of the sexual health clinic in second hand army boots, for condoms and pills and other armour.

We are all different. You might believe that my kind of sex neither takes its appropriate form nor serves its appropriate function. You might have stomped up stairs for the same reason I did, or you might find that abominable. You might have loved it, or not. You might have shared it with many people, or with one. It’s political, it’s personal, it’s universal, it’s fucking everywhere. There’s fucking everywhere. In the same way that in those early weeks after Iris died every woman was pregnant, every commercial was for baby paraphernalia, every goddam Facebook status update came with a fuzzy ultrasound photo. Everywhere, everywhere, everywhere, until sex WAS loss and its expression evidence of the distance between us.

I pause and exhale. My hands push in to my eye sockets. I wish we were in that cafe, or at my house, or better still at a bar with an infinite  line of tequila shots and a cute bartender, and I would shout ‘SEX!’ too loudly, and everyone else would blush,  and we would cackle instead of cry.

But instead you are there, and I am here, and now I have to ask: how was it for you?

Has sex changed for you in your grief? Why? How? In what way? Be frank, be euphemistic, be anonymous, be however you want to be, but please tell me.