welcome

Parents of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged, understood.

Many thanks to artist Stephanie Sicore for allowing us to feature her little bird in our banner.

subscribe
categories
search
Powered by Squarespace
Tuesday
Jun022009

inside the daily crazy

I haven't held a baby since March 31st of last year. She was beautiful, and so cold. I held on for hours, telling her how much I loved her, my vision blurred with a lightning bolt migraine and an endless stream of tears. One of her doctors came in to offer his condolences; he stayed at the doorway with visibly shaking hands. He was young and I actually felt sorry for him in the moment before the first buds of hatred sprouted.

A nurse helped me dress her in a soft white onesie before we wrapped her in a blanket. Then we said goodbye, because I couldn't take the physical effects of death anymore. The walls were closing in on us and I just couldn't make her warm again. They put us in a cab and as it pulled away I saw the counsellor who had visited us through the week running out after us. Our eyes met briefly through the window but I couldn't ask the driver to stop. The look on her face had made me instantly nauseous.


.::.


We're at that age. I have friends who are pregnant, friends who are trying to get pregnant, friends with thriving, adorable infants whose photos it simultaneously kills and thrills me to look at on Facebook. Blessed with some wonderful women in my life, I constantly wonder what it will be like when the first one holds out a newborn for me to hold. Will I hold it together? Or will I crumble?

.::.

"She'd be tottering around back here by now, just learning to walk." I gesture over my shoulder from the patio table toward the green lawn in our backyard. Hold my arms out like an idiot lacking balance to demonstrate.

He smiles just slightly with acknowledgement, nodding.

"And there'd be shit everywhere."

"...."

"....shit?"

"Yeah. Toys and stuff. You know. Baby shit."

Ah.

Understood. The good kind of shit, not the dirtied diaper kind.

Eloquent.

.::.

There are a few advantages to working for the same company as your spouse. We travel together in the morning, reading the free daily on a swaying train. We get caught up, decide who's going to cook that evening. Occasionally we bicker and I tell him we shouldn't travel together anymore. We have our coffee guy. Our bagel guy. I only need one Christmas party outfit.

The downside is that he's been there for almost ten years. People have known him a long time. They knew him before, when his wife was expecting. They collected their heavy shrapnel-like coins and a few generous notes in an envelope until there was enough to buy us a congratulatory gift. They noticed his two month absence after she died.

Over the past year or so I have been able to tell every time I'm introduced to someone new whether or not they know. I recognize the moment it clicks. The hear the accent and the familar surname. There is a flash of recognition in their eyes, replaced just a second too late to be hidden by the forced and cheerful smile that follows.

There are a handful who just plain old avoid me altogether. Actually look to the floor when I walk past, and hell maybe I'm imagining it with my all sorts of crazy, but I'll bet it's not unlike the way they look at a person who's terminally ill, or whose spouse is cheating on them and they're the only one in the whole goddamn building who hasn't clued in yet.

They're the ones I want to get up real close to. So close that our noses touch and they are forced to look me in the eye when I tell them that I'm not contagious.

.::.

There are babies I do like being around. In line at the grocery store, gumming away on a soother, holding it out for my inspection when I catch their eye and smile. There are the ones on the train after work. Sat cozily in slings against their mother's chest, waving their arms and staring at everyone innocently.

I make it a point to sit next to them, getting a little anonymous fix in. One goofy look and the cutest ones pay back in spades, kicking the air and coo'ing at me with interest. Mostly their parents smile at me and laugh, proud and chatty to the blonde who they see as a harmless kid lover.

"Do you have any?"

I just shake my head no. Nothing further required. All they see is a friendly woman of childbearing age, engaging with their perfect kid. Maybe they believe I'm secretly pregnant, or hoping to be.  They don't know, and I don't have to explain the truth. In those ten minutes until my stop I can enjoy sweet baby bliss under the gaze of someone who will never know my story, and who will never be searching for the crazy reaction of the woman who lost her own. Sadly, it's appears to be all I can handle just yet.

.::.

What was your first experience with a baby after your loss? How did you handle it - was it easier or more difficult than you feared it would be?

Friday
May292009

Balancing act

"How the fuck do you think I am?"

How many times have you wanted to scream that? Alternatively, how many times have you wanted to meet their eyes, all calm, cool, and collected, and say that? Just say it-- no forced smile, no nothing. No other escape routes we seem to want to provide. How many times?

And how many times have you actually said it?

Why is that, you think?

 

We've had some incredible conversations here at Glow the last little while. It's not that we haven't had them before-- we nearly always do. But the last batch, the last month or so, they seem to intertwine. A funny thing-- even after the thesis of this post came to me, a couple of weeks ago now, its themes kept echoing in new posts and in comments. (Or maybe it's just that once you buy a red car you start noticing them everywhere. I don't know-- you tell me.)

 

A quick mental experiment for you. Ready? Ok. So you are at a small informal gathering. Beer and hot dogs, that kind of thing. Elitist that I am, I am having a Leffe Brune, slowly, since I am enjoying every little sip. (Hey, it's my mental experiment. Just because I haven't had a real one of these in years is no reason not to throw one into a hypothetical, right?) And what are you drinking? So anyway, it's now like an hour and a half into the party, and who should show up but NM, with her three months old sleeping peacefully in the stroller, of course. She's a very nice person, and you have nothing against her. She apologizes for being late and goes on to say that she just doesn't seem to get anywhere on time anymore. Or into the shower, for that matter, most days.

This is now the part of the exercise where I ask you a question. Here goes: what do you think NM hears in return? 

Personally, I am hearing encouragement and gentle teasing. War stories, of course. All driving at the same essential point-- oh, dear, a shower is a luxury, sleep is a dream, you are a blabbering mess starved for adult conversation but lacking mental capacity to carry one out. And it's all supposed to be like this. C'mon, taking care of a baby is hard work.

Sounds about right? Ok, so let me tweak the scenario a bit. The woman late to the party is BM, and her baby died three months ago. She apologizes for being late and goes on to say that she just doesn't seem to get anywhere on time anymore. Or into the shower, for that matter, most days.

Next question: how do you figure she's treated? And no fair making this a Glow reunion party-- this is just your regular old summer gathering.

I'm seeing a range of reactions. A couple of people look away, perhaps exchanging meaningful glances. Somebody, I am sure, attempts to engage her in conversation about the weather and local sports teams. If she's particularly unlucky, someone might want to sympathize by saying that her own three year old still wants so much mommy time that she has a hard time getting to the shower on weekend mornings. I wonder if someone actually tells her that she's lucky she can sleep in if she needs to. I wonder, also, whether the very concerned take her for a walk to tell her that she really needs to pull herself together, and that the people who just said those things that made her cringe? They meant well, and she's just being oversensitive. Or maybe they just whisper these things behind her back, shooting sideway glances at her, as she nurses her beer in the corner, looking a bit out of it to be honest, the poor dear.

 

Pity. I don't know about you, but what I'd really like to do it to tell the person pitying me just where and just how deep to shove it. Pity is one of the very few things about bereavement that make me certifiable angry. I don't want pity. I want empathy. I want it to be a genuine and universal response at that party to tell BM that it's all ok, that of course she's having a hard time, that grieving is hard work, and it's all so very new still. And yes, I also want world peace and a pony. Why do you ask?

I've known for a long time that I hate pity. But I've believed it to be all about me. I thought it devalued me, discounted me, separated me from the one doing the pitying. I still think that. But now I think there's more to it. I think it's also about how I want the worth of my child to be seen, how I want him to be valued.

 

I asked all of you here about self-care, and in the comments there ensued a conversation about putting on make up as some sort of war mask, a face to present to the world, to hide behind. Something to make yourself look presentable, functional. Sane?

Within days of that conversation, our very own Bon found herself at the center of a large and swirling shitstorm. See, Bon wrote a letter. A very reasonable and articulate letter to the hospital where Finn was born and where he died only hours later. She asked them to temper the looky at these incredible survivors here, don't you just admire their spunk, pluck, and tenaciousness tone of their fundraising literature when such literature is sent to bereaved families. (Can I get an Amen? And thank you.)

So what do you suppose happened when CBC picked up the story? If you said that the tone of the article (now toned well the hell down following pushback) made Bon out to be a fragile and possibly ranty woman on the lookout for perceived injustices to stomp her feet at, and that a bunch of readers piled on with comments to the same effect, suggesting, you know, grief counselling for the poor sad woman, clearly out of her mind with grief, ding-ding-ding you win. Grief counselling. To learn to, you know, manage your grief. To learn to contain it. To stop letting it pollute polite conversation. (To be clear-- I am not knocking grief counselling. I am knocking the people who believe that it graduates fixed people, happy people, completely over their grief, and ready to fully rejoin society, already in progress.)

A somewhat funny thing happened as the comments rolled on. A link to the original letter got posted. People came to stand up for Bon and to push back. And some of the knee-jerkers even clicked over to read the letter. And some even said something to the effect of "oh, well, the letter is reasonable." And aren't we all glad it met with their eventual approval?

 

And so here's my new hypothesis. I think we try to act like we have it together because we need to be seen as sane. Because in-sane people are easy to dismiss.

She's just insane with grief, can you imagine?

You can pity the insane and walk on by. It's totally allowed. You can even judge them. They are the other, not you, not one of the normals. You don't have to try her grief on in your mind. She's clearly lost it, and you would never let yourself fall apart like that. I mean, sad things happen all the time, but it's been months now. You'd think she'd be better by now, you know?

Sane people, on the other hand, need to be taken seriously. We interact with them. We're supposed to listen to what they say. Pay attention.

And so I think that some part of our need to be seen as sane is not about us. Not about our pride being hurt if we are pitied. Not about being infuriated because we are patronized with idiotic advice on how to make it all better. I think that some part of this is about the need to have our children, these little people we are grieving, be seen as profoundly cherished. Grieved by crazy people, they are invisible. Grieved by articulate sane people who are still hurting, they are suddenly important. Worthy.

I think we hold it together so that when we choose to talk about it, we are not dismissed. I think one of the things we most want others to understand is that our grief is not an overreaction, that our love for the person who died warrants the grief, that it's messy as all get out, but that the mess too is normal. Not an overreaction. Not an overreaction. NOT an overreaction.

 

Tash once found a sentence in her medical records: "the parents have been grieving appropriately." Yeah, I see your eyebrow. Mine did that too. So glad the white coats approve, right? But as much as it stings delivered like that, as a judgement, even if a positive judgement, I think I might want that on a t-shirt--  I am grieving appropriately. Now shut up, stop judging, and listen. 

 

What about you? How much of your grief do you let others see? And what happens when you do?

Monday
May252009

don't hold me and burn me

"What, honey, what did you say?"

"Mom, I don't want you to hold me and burn me."

We were in a thrift store. Me and my two living children. I was sifting through the racks, tired from desperation. I needed to find something I can fit into. Something that could accomodate my flabby post-birth body and my swollen grief. Then I heard my younger daughter, then four, say those words--

"Please do not hold me and burn me."

I had to ask her to repeat a few times because I was not sure what she was talking about.

And then suddenly, under that fluorescent lighting of the store and amidst the smell of pre-owned clothing I suddenly realized what she was talking about.

Of course.

They were with us when we looked at Ferdinand and held him for the last time, before his cremation. She saw me holding him, pressing his hard, frozen body wrapped in a blanket against my chest, saying goodbye. We sang to him together, in that little tiny room without any windows. Then, we drove behind the car of the mortuary guy to the crematorium and they saw him being put in a container and then we said goodbye one more time, and he was cremated.

She was afraid that as my child, I will do the same to her- hold her and then burn her.

I cannot even begin to tell you the feelings that coursed through my body upon the realization. How I held on to the shopping cart to stop myself crumbling to pieces and then leaned over and hugged her and assured her that of course, I would not do that. I told her that we had to cremate her little brother because he was dead.

::

Children and death. It seems they deal with it with grace and ease, and then it seems they get all tangled up in the concept and get confused.

My daughter was four then. Not having witnessed the process of death with her own eyes, death was a very abstract concept to her. While we immediately treated Ferdinand's death in an honest and factual manner, she did not understand it. When they came to the hospital to see him after his birth, his battered body wrapped up in a blanket, with an oversized cap pulled over his head, all to make him appear as "normal" as possible, she asked me to show her his hand, the rest of his head, and she asked if he has a tongue. Since she did not see him alive, ever, she did not understand why he is dead. What makes him dead? Will he still have a tongue, a hand, a head?

Then, I guess as she tried to figure it all out in her head, she asked me, weeks after, to not hold her and burn her.

What keeled me was the thought that she felt that I had the power over her. I could hold her and burn her, if I wish to. Except of course, that was not the case. I was also afraid that she thought that I killed her baby brother. I held him and burned him, reduced him to but a small bag of ashes. I spent the days after telling her over and over again that we did not know why Ferdinand died, but he did, and after a person die, there are different ways of dealing with the body, and cremation was what we chose.

:::

Now, she is a few months shy of becoming six. I think she sort of gets it now. She asks about whether I will bake a cake for Ferdinand this year, as we did last year. She talks about him being dead but still close to us. She no longer asks that I not hold her and burn her. Recently they both had to draw some pictures of our family as they fill in a family tree. She drew her brother just like any other "normal" person she would draw, while her older sister drew him with wings, the way she always envisions him- flying in the sky above us.

::

I wish there is an easier way to explain death to children, but it is really so abstract. And another difficult thing to deal with after our baby has died. We read some books about death after Ferdinand died, but I think the one we liked the most and found the most comfort in was the book Lifetimes. It explains about life, living and death in easily understood terms, and at times I find solace, comfort and strength in these ideas. Not always, but at least, some times.

 

How about you? Did you have to explain death to younger children, or to children of friends and family? How did you do it? What reactions did you get? What made you keel? Was there anything out of children's mouth that had comforted you? Do you have a book you can recommend for children to talk about death?

 

Tuesday
May192009

warrior mama

When I was pregnant with Dahlia, I was absolutely, undeniably, nothing’s gonna get in my way going to birth my child at home, and naturally. I was even, I admit, judgmental about anyone’s choice to do otherwise – I just couldn’t understand why anyone would actually want to have their baby, on drugs, in a hospital. Without being aware of it, I took for granted that a healthy baby would be the guaranteed reward of my empowered choices – an exceptionally healthy baby who would thrive even more than expected because s/he would come out of me naturally and go directly to my breast, uninterrupted, in the comfort of our home.

Dahlia had other plans. After 32 hours of hard back labor at home and several of those hours stalled at eight centimeters, I made a very clear choice to go to the hospital for an epidural. Six hours later, she was born easily and safely and immediately put on my chest. Four hours after that, having signed a dozen liability waivers to be allowed to leave the hospital early, we were back home in our bed with our new daughter.

I had my healthy child, in spite of her hospital birth. Even then I took for granted the incredible miracle of her health and her life. I spent a good part of the next year working through my guilt around having chosen to go to the hospital and have an epidural. A part of me felt inferior for the choice, and I felt, in some way, that I had failed.

I did it with Tikva too. Even with this child whose life – of any length – I knew would be a miracle, I fretted for a while during her short life about having chosen the epidural. The epidural I told Dave I wanted because I didn’t feel relaxed, and I wanted – needed – to feel relaxed as I delivered my child whom I knew would be unable to breathe on her own, who might not even make it past her birth. Maybe it was my brain’s need to fret over something that really didn’t matter in order to distract myself just a little bit from what was so constantly at the forefront of my consciousness: That my daughter’s life was fragile and unsure, her future – and mine – unknown. That she very well might die, and that I would be forever changed no matter how the story unfolded.

My thoughts have rambled before around the question of how to birth a child and what my choices mean. But it’s not this that is on my mind right now. Though related, it’s something different.

I have read my share of birth announcement emails and birth stories since Tikva came through my life. All are different. All but one have announced the birth of a healthy living baby (or babies). Some were born in the hospital, some at home, some vaginally and others by scheduled C-section for various reasons. Regardless of location, those that told the stories of vaginal deliveries have shared one quality:

Praise of the superior mother who births her child naturally, vaginally, and without drugs.

I live in the San Francisco Bay Area. It is a progressive place, a liberal place, a funky place, full of New Age and yoga studios and locally grown organic produce and raw food vegan restaurants and Michael Franti concerts in small venues. I love it here, it has been my home for 30 years. And I recognize that I am immersed in just a tiny sliver of the way most people in the U.S. – let alone the world – approach life. Before he met me, my husband didn’t even know babies could be born at home in the western world.

Yet there is a certain holier-than-though message being communicated here without being spoken outright, and I don’t think it is just here in California. As the day of Tikva’s birth approaches a year later, I have become extremely sensitive to it. The message tells me:

You are a powerful goddess, a mighty warrior when you have birthed your child naturally, trusting your inner wisdom and strength to guide you.

Because you are a warrior, you will be rewarded with the undeniable manifestation of your choices – a healthy child.

So what am I? What am I if I birth my child in another way? Am I less mighty, less empowered for choosing to have an epidural? Am I less of a warrior because I birthed my children in the hospital? Do I trust my inner wisdom less?

And what is Tikva, my child who died, whose body was too fragile to live for very long? Any less a gift? Any less a manifestation of the most incredible grace and magic life has to offer?

And what of Dahlia, my precious light who was born healthy, in the hospital, with an epidural?

See what I’m getting at here?

How about this for warrior:

I birthed two babies, and carried three. I said goodbye to one too soon at just 10 weeks of pregnancy. I carried Tikva for 20 of her 40+ weeks knowing that she might not live. I moved halfway around the world to give her every fighting chance. My relationship with my husband grew deeper and more solid throughout her life and since. Together, we cared for Dahlia while she, too, loved and lost her sister.

I loved my daughter fiercely for every day of her short life. I lived with grace, connected to her and to God in every moment. I loved her so completely, so unconditionally, that I knew when it was time to let her go. I held her as she breathed her final breaths. I felt the moment when her spirit left the beautiful body that I held in my arms for the last time. I stroked her soft cheek. I held my daughter as she died.

Am I less of a warrior because of how and where I birthed her? Am I any less her mother because she is not here in my arms?

So much of our collective identity as women is tied to being a mother. No wonder all of that comes into question – in our own eyes as we look at ourselves now, after loss – when our child dies. I can only imagine how much more so when that child dies before s/he is born, or during or shortly after birth.

But we are no less a warrior, no less empowered, no less mighty and powerful and connected to our inner strength without our children here to prove it. I never knew the depth of the warrior I could be until Tikva entered my life, until she departed. I never knew the grace I could live from was possible before her.

I think we are asked – in the moment of loss – to tap into a warrior in ourselves we might never have known was there. Because to mother a child who has died – to say goodbye over and over, to let go a little bit every day for the rest of our lives – is HARD. It is powerful, mighty, full of grace.

The work of a warrior like no other.

That’s what’s been on my mind lately when I think about birth.

That’s what I remember when I read another birth story, when I doubt for a moment the true warrior that I am.

Yes, I am a warrior too.

And so are you.

.::. .::. .::.

What makes you a warrior? Do you believe that you are? How did you approach birth before losing your child, and now?

Monday
May182009

everything but Silas, part 2

Our house and our hearts were filled on Saturday. It has been so long since I have felt as calm and peaceful as I did after we returned from the ceremony at the park.

Inside our apartment was madness, though. I was whipping up press pots of coffee as my aunt shoved food into the oven and people wove in and out of the rooms and between bodies pressed close together. A bag caught on fire. I dropped a pie while rearranging the refrigerator. The cats scampered in fear as our cousins and nephew chased them around. Conversations and chatter filled the rooms and the yard, and it was right.

Music played through the stereo as the Mets fans in the family piled up on the couches, watching the game. Pizzas were ordered, food was brought out and furniture and tables were rearranged on the fly, everyone chipping into do whatever was needed at that moment. We had a plan, but it was loose and success depended on everyone adding their little piece.

It was the same out at the park, when we planted Silas' tree. The three shovels were passed many times and at the end, everyone laid a rock on the fresh mulch under the tiny branches filled with small, vibrant leaves.

We intended to have a marker or plaque, but we just never got around to having it made, and by the time we were mentally prepared to do that it was too late. Instead we figured we would maybe wait a year, until the tree got a little bigger, and have it created and placed then.

Our friends were one step ahead of us. They had Silas Orion engraved on a large, amazing stone, and brought it with them on Saturday. It was exactly what we wanted.

Even the weather was right. A bright sunny day would have been too gorgeous and stark for such a sad event. The low, menacing clouds matched the tenor of my emotions. All day I was calm but unsettled. I felt sad, apprehensive, and that low-grade burble of terror softly churned in my belly. It's like feeling butterflies, but with razor-winged dragonflys instead.

As 2pm approached only a few people had arrived. And then suddenly everyone was there. The house went from empty to overflowing in a matter of about 15 minutes. It was great to see so many friends and family, but it was terrible as well. That twisting, complex emotion made me feel disconnected and a little disoriented. There was a feeling of celebration, having everyone together, but it was also desolate and sharp. "Yay it's everyone we love!" mixed brutally with "No no no no no not everyone. That is why they are here."

But we did it together, and that made all the difference. We walked to the park in small groups. I locked up the house and waited for stragglers and then brought up the rear with some of my oldest friends and one of my brothers. Across the expanse of the park I could see the colorful gathering of our friends and family. The center of their loose arc was immensely small compared to the thick, old trees standing tall all around.

At the park, next to the sapling, I shoved my spade into the earth forcefully, and then asked everyone to come closer and circle around. My father welcomed everyone and then recited Hard Times Come Again No More. I said the Hopi Prayer, and then Lu stepped forward to tell everyone why we picked an Acer Rubrum “Red Sunset” Maple tree to memorialize Silas. "The colors will be brilliant in the fall, when Silas was born. And he was born here, in this town so we wanted the tree to be here, too," she told them, and then she asked for everyone's participation to help us finish planting it.

Before they took up the shovels, though, I stepped forward one more time, because there was something else Lu and I wanted to say to everyone. I was barely able to speak at this point, but it was something we felt needed to be said.

"We do not believe that everything happens for a reason. We do not believe that we are being punished or tested by God. But we do believe that the only way we can can get through this is with all of your love and support. And we are so thankful that you are here with us today to help us, and that you will continue to be there for us, because we need it. We need it so much."

Family stepped forward first to shovel on some dirt and fertilizer, and then suddenly it was done, I was no longer the focus. As each person took hold of the shovel their total attention was on the tree and the task. This was their moment to physically connect with the ceremony, and in turn, our missing son. The action of their arms and hands on the handle, the scoop of dirt, the arc of pebbles and soil in the air as they each helped fill the hole around that tiny tree made the ceremony visceral, complete.

I loved seeing that look on their faces. I needed their sadness and attention to this everyday fact of my impossible life.

It's almost a little sadistic, I'm afraid. I wanted everyone to hurt yesterday. I needed them to feel the bottomless ache I live with every day. It gave me a sense of peace I have not felt for a long time. I didn't have to bear this alone because everywhere I looked on Saturday, I could see pain and sadness and understanding in everyone I loved. My load was lightened because of their hugs holding me up and their tears joining mine.

It turned out that I did not need to demolish the park as part of the ceremony on Saturday. I want that tiny tree to have good role models all around it. I want it to grow up tall and wide and strong. I want it to grow so tall and so wide, that I cannot get my arms around it when I'm out there some day down the line, holding onto it for dear life, because I still can't get my arms around my beautiful, missing son.

Did you perform a ceremony to remember and honor your child?  What was your favorite part of that terrible day?  What prayer or poem or song lyrics did you use in the ceremony?  What changed for you before & after that day, if anything?