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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.

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Sunday
Aug092009

Duty

People have stepped on my toes before. Many have done so and walked on by. Whatever-- people are self-absorbed, I know, and I try not to take it hard. I am OK at it, I like to think. You forget how much work I did on this one project last year? Harrumph, of course, but I'll deal. An extra latte, perhaps. Oh, yes-- just the thing. In fact, I discovered, that extra latte is a cure for great many things, people being inconsiderate prominent among them.

Except. Except when they are being inconsiderate about my dead baby. Scratch that. Not all people-- most people, people who don't know, who are just randomly passing by, who know me, but not well,-- from them it will sting, sometimes a lot, but it won't sear. They, I reason, do not owe me consideration. Not any more than any random person. And though I, myself, may aim for considerate at all times, I know that not to be everyone's standard. And so I don't hold most people to mine.

 

I watched the pilot of The No.1 Ladies' Detective Agency this spring purely on the strength of the previews. I stayed for the series because I liked the pilot. And because the main character, Mma Ramotswe, is a dead baby mom. They might've laid it on a bit thick in the first episode with a violent flashback (not that there aren't things to have violent flashbacks about in her particular dead baby story-- more like that the one they picked for a flashback isn't entirely believable), but from then on I really liked how they handled that part of her story. It's in every episode, and only occasionally overtly.

Most of the time it's something that I bet many a viewer won't even pick up on. It's subtly written, and subtly played. But if you know, if you've heard these things yourself, you can see it, plain as day. Like the time when a client of her detective agency, not thinking much of her suggestion that perhaps it wouldn't be a good idea to hire a detective to spy on his 16 year old daughter, tells her that she, as a childless woman, must take his word for what's the right thing to do there. Mma Ramotswe doesn't say a thing, but-- and this one goes to how good an actress Jill Scott is,-- you can see just where that hits her. 

In the show, as in life, the context is everything. Mma Ramotswe tells another client, a woman looking for a son she believes probably died in Africa many years ago. But not this man, because, and we all know it, it wouldn't make a difference to him where his daughter and the need to spy on her is concerned. Besides, perhaps this is not the type of man you want to trust with that most sensitive of personal information, and likely not something you want him to know in a professional context anyway.

 

So context. Context is what I've been thinking about. When it's a friend who steps on my dead baby toes, or, as I tried to explain to a group of friends recently, when it's friend who hits my open compound fracture, the existence of which fracture is something the friend in question is most certainly aware of, that's not something I can just latte away. But it is, for me, something that can be reasonably turned into the proverbial water under the proverbial bridge with a simple and direct "I am sorry."

What has me bewildered even now, more than two weeks after that conversation, is the statment by another in our group of friends, that she thinks we must consider other's feelings in how we react to what people say. As in, don't make a scene. You know, don't you, that people don't mean to be hurtful, and therefore, even if you did point at your compound fracture and wince in a way that should've suggested to the person continuing to hit that very spot, that perhaps it would be best to stop now, you shoudn't, before hightailing it outta there, finally raise your voice to suggest that the person stop-bleeping-hitting already.

I guess a more accurate description is that I am by turn bewildered and infuriated, and working hard to stay with the bewildered (because infuriated may end up fracturing the group). Because you know what? I don't think we have a duty to be nice to people hitting us where it hurts. We might, as Mma Ramotswe does, not want to say anything, either in a particular situation or at all. We might not want to be party poopers, or we might not feel up to talking just then, or, indeed, ever. For our own reasons we might choose not to speak up. But what gets me is the suggestion that we ought not to, or that if we do, we be super extra tripple nice about it.

I do not believe we owe it to anyone to keep quiet. (I'll go further-- some of the shit people say, they really should feel bad about.) I don't think the one in pain should also be responsible for gracefully articulating where and exactly how much it hurts. Luckily for me, most of my friends don't think that either.


And what do you think? What do we owe those who are hurting us with their words? Does it matter if they are friends or random passers by? What, if anything, do you think people owe us?

Monday
Aug032009

yours sincerely, the clinical genetics dep't.

"The cause of her demise was early onset cardiomyopathy."

Commonly referred to as DCM. The knew from day one what was wrong with her heart. They credited my instincts for sensing something was off, for bringing her to the A&E that morning. I was worried about her loss of appetite. Never in my worst nightmare did I envision we'd end up riding to the children's hospital in the back of an ambulance by mid afternoon.

They also told us that day that they would likely never be able to tell us the underlying cause.

Unacceptable. Horrifyingly unfair. You are DOCTORS. Giving me the information I need to help her get better is your JOB.

We had absolutely zero control over the situation from that point forward. She struggled for the next week before we lost her after the longest night of our lives.

"I am pleased to let you know that again, no abnormality was identified. Whist this is good news, it leaves us with an uncertain situation once again."


That's it? That's ALL you can give me? After a year of candidly discussing how much of her DNA was left, your desire to preserve the precious reserves in the event that some discovery was made? THAT IS MY BABY you're talking about in goddamn remaining measurements, for the love of all things remotely sensitive.

"We have tried to explore the possible options as to the aetiology of the cardiomyopathy identified in Sadie and we remain without a definitive answer."

Then honestly? What the fuck ARE you good for. Honestly.

"This means that we are left with a small residual risk of similar problems happening again in any future pregnancy."

A small residual risk. How do I wrap my head around 'a small residual risk' as it applies to the life of my child? I can wear a helmet. I can tell him to put a condom on. I can wait for a green light before crossing. What can I do to mitigate the risk of going through it all over again? Much more importantly, putting another child through it all over again?

"I would advise you to contact me when you confirm a pregnancy at home in order to enable me to arrange the relevant scans for you."

Well if I were you Honey, I wouldn't go out and buy stocks of Clear Blue Easy any time soon. Trojan, perhaps?

.::.

I'm going through a bit of a bitter phase lately. I hate that I still get angry at the world, but it's still there, simmering right under the surface. It gets worse the more I put pressure on myself to gather the proverbial balls and start taking folic acid.

I like my questions to be answered, and I typically 'need' to make my decisions from an informed point of view. If I'm being really honest, I regularly wonder why it couldn't have happened to someone else. Someone awful and cruel. Someone who 'deserved it'. 

Without the control I would normally exercise in another paramount life situation, I am left feeling weak. Feeling weak piques my temper. I'm not proud of this, but there it is. As I work to not let it seap through the seams to stain the relationships in my life, I wonder how thousands of other parents in our situation have learned to deal with the same situation.

.::.

I think this time around I am asking for help.

I would really, really love to hear from parents who have been through experiences with genetic counselling, whether your results were definitive or inconclusive, like ours.

I would really, really love to hear from parents who went on to have more children despite the risk of a recurring condition.


.::.

If your loss was due to a potentially genetic condition, how did you deal with the decision to try again? Were you able to put the stats from your mind and forge forward with hope? What did you find helped you in the process?

Tuesday
Jul282009

the pressure

You've read those stories. Those people who had near-death experiences and how they became changed people: gave up smoking, went overseas to volunteer, building houses for the poor, holding sick children. They finally find a job and get sober, go to church, become a shining member of the community.

When you've expereienced a life-altering experience, usually you come out stronger, and become a much more positive contribution to your family, society, the world, the Universe.

For me, Ferdinand's death was a near-death experience as well. (Actually, I died.) It is without a doubt life-altering. But I did not emerge a better person with a lot to give to this world. I will say though I feel more awake in some sense.

I will admit that I almost felt the pressure to become better. To start serving food at the soup kitchen, run marathons to raise funds for various causes, perhaps donate a kidney, half a lung, maybe an eyeball even.

Do you think this? -- Something's good gotta come out of this.

Sometimes I do, sometimes I don't. It depends on the day I am having. Some days it makes me more compassionate and I can actually reach out and be genuinely nice to (grouchy) strangers. Some days I spit on the dirt, slam my door and slither under a rock, wrapping my rattling tail around my neck.

I have not done anything major after my son died. Sure, I made a few donations and I made great efforts in being an even more present mother. I worked harder at being compassionate, calm and patient. Other than that, I have just been trying to live, trying to figure out how to live the life of a bereaved without making a laughing-stock of myself. (And all the while fending off insensitive remarks and some clueless people who makes the already-bad life-after even worse.)

Now, two years out less a day (tomorrow is Ferdinand's birth/death day. I don't know what is a good word to call it. Anniversary? Birth and death day? Usually we call it birthday in our house...), I feel I am slowly coming out from the shadow.

I am not ready to do big things yet. (Though sometimes I wish I do. I wish I am announcing here a new foundation I am setting up, a baby-related research that I am throwing money into, a charity that I will be sponsoring for life, the name of the soup kitchen where you are going to be seeing me... but NO. Not today.) Just small tiny steps. Like trying to walk again with new feet.

Just trying to live better. For myself, my children, my family. Doing things I can for the community, when I can. Living more eco-consciously. Listening better to strangers. Not curse so much when driving on the highway, sending compassion the way of errant drivers (of course I am a perfect driver. Don't you ever doubt that).

A part of that entails stepping away from the internet and spending more time and attention on making our house more like a home, not the war-zone it has been the past two years. More time with the children I have earthside, creating memories that will buoy them and strengthen and empower them and make them better citizens of the world (hopefully). More time thinking about what am I here to do, what potential is within me that needs nurturing, perhaps?

So, this is a farewell post on this wonderful website. I am sad to go (and honestly, even afraid... but I will still have my blog), but I also think it's time for new blood. I feel I have said a lot and it is time to listen instead. I also just wanted to explore this issue of the pressure to be "better" and to do grand things after our babies died, wondering if I am the only moron who thinks that way. Will you share your thoughts?

Friday
Jul242009

a suitcase full of hope

Chapter One

The suitcase is almost entirely filled with baby clothes. They were given to us for Tikva, before she was born.

After she died, I sat in the middle of the garage with Auntie Marty, and we went through the boxes and sorted them out. Marty was so patient with me – loving, calm and focused. She helped me decide what I wanted to keep and what I could let go of. She held the space while I touched each piece of small clothing and imagined what Tikva would have looked like sleeping in it as a baby in my arms, dancing in it as a toddler. I put everything in two big boxes and put them away in the garage.

Now, I go through the clothes again, almost a year later, and I put each piece into the suitcase.

My suitcase full of hope.

Hope that I will have another child, and that if she is a girl, she will wear these sweet things that were meant for her sister. I pick up a pale pink ruffled dress that Dave found in a thrift store a few months before Tikva was born and the tears come rushing. I just sit on the bed and cry, letting go a little more, letting go still all these months later. Then I put it in the suitcase, wondering what it will feel like when I do put that dress on my next child, my third child.

The next day I get on a plane with my suitcase and take it to Cincinnati, where the next chapter of our lives await us. In two short days, I find us a home to move into next month. I sign a lease. I make a video to show Dave and Dahlia what it looks like. I can start to see what is ahead now. I can imagine where we will put a crib when the time comes.

:::

Chapter Two

We are packing up the rest of the house. Gathering up our things to take with us.

Preparing other things to return to the generous souls who loaned us the makings of a home when we first returned from abroad – befuddled and overwhelmed – in order to give Tikva the best chance in the world at survival.

As I pack, I feel like I am undoing all that I put together before her birth. Moving backwards, as if the film projector is playing on rewind on the screen.

Tikva’s special things sit in their boxes and jars, soon to be put in a suitcase, destined for the wooden chest that awaits them in Ohio. The altar that has formed on our borrowed dresser awaits its turn to be put away in a box – found treasures from my walks in Golden Gate Park this past year. The toys people gave to Dahlia, and which she accumulated for the sole reason that she is five years old and that is what five year olds do, are sorted through and await their own suitcase. Maternity clothes are passed on, a few favorites packed to take with me (more hope). I have the vitamins and herbs I need to prepare for a healthy pregnancy in the near future (more hope).

The thing is that I really do believe there are good things ahead. Sometimes, when I am being especially Chicken Little about everything (aka catastrophic and completely overwhelmed), Dave reminds me that so much good awaits us. I know that, I really do. I feel it. I can close my eyes and feel myself pregnant again, holding a baby, nursing, holding a toddler’s hand.

I guess I just need to get there to really settle into the feeling. Get past this week of packing. Get past (and enjoy) the drive cross-country. Roll into the driveway of our new home. Get reacquainted with most of our belongings, which have been in storage for two years. Unpack. Settle into all that is new.

But first, this week of goodbye.

:::

Chapter Three

I go to my twentieth high school reunion. Anybody who asks me how old my children are gets to hear about Tikva. It feels good to talk about her. Right. Easy. People are at their best when I tell them, sweet. One old classmate says, Wow. I'm sober now. Another says, Can I buy you a drink?

A third tells me that I’m not the only one – a classmate I had barely known in high school also lost a child – her first, six years ago. I go over to her and tell her I'd like to talk to her about something we share. She knows right away what. We talk for a long time.

Uncharacteristic of me this past year, I feel social, friendly, chatty, and a bit tipsy. I am doozied up and look great. I talk to all kinds of people there, even those I had barely talked to during high school. I feel very much myself, no walls. Maybe that’s why it is so easy to talk about Tikva – my second child.

It feels like another layer of wrap-up. I want to say closure, but the closure isn’t about Tikva. It is more about wrapping up a chapter of my life that brings me here…

To this more true, more complete version of myself. The me I take into all that is ahead.

:::

Chapter Four

It feels like the last few pages of Goodnight Moon right now…

Goodnight clouds.

Goodnight air.

Goodnight noises everywhere…

Goodbye park.

Goodbye beach and ocean.

Goodbye hospital monolith on my way to everywhere.

Goodbye headstone marking the place where Tikva’s body lies.

Goodbye father and sister and family.

Goodbye friends who have held us (together).

Goodbye San Francisco.

Goodbye to this time, this chapter, this huge piece of the story…

:::

Chapter Five

Now it is all pretty much undone – at least on the surface, in the house. You can’t really undo two years of living… deeply.

I sit on the floor in an empty, echo-y living room. Dave sits on a bean bag chair next to me. It was empty when we arrived in the middle of March 2008 – my belly full of her – so early on this journey. Now this chapter wraps up.

Several times this week, I have wondered when the grown ups were going to show up to take care of all the dealing that needed to be dealt with. Packing, cleaning, organizing, administrating. Then one of those moments:

Oh! I am the grown up. Sigh... Shit! Nothing else to do right now but pack. It has felt endless, but it’s almost done, we’re almost on the road. Tomorrow we’ll take the mezuzah – the one from Jerusalem – off the doorpost to bring with us to Cincinnati.

:::

Chapter Six

We go to the cemetery one last time – for now – and I make two rubbings of Tikva’s headstone to take with me. One in color, one in black. On the way there, two baby hawks sit on two lampposts on Sunset Blvd. On the way back, one remains. On the way out a bit later, the same two are on the same posts, and a few blocks away, two adult hawks sit together on another post. A family of hawks – four.

Two and two. Two adults. Two children.

I sit before Tikva’s headstone by myself and cry.

I wish I could take you with me, Tikva. Literally… in a carseat next to your sister. Your big beautiful eyes looking around as you chew on your hands and babble.

I just sit and stare at her headstone – accepting.

And just a little bit amazed, still, that this is what we get.

This is how it is.

::: 

What transitions have you been through since losing your child(ren)? Have you felt able to take them with you? Left a piece of yourself, of them, behind? What has enabled you to stay connected, and grounded, during your transitions? What have you let go of?

Monday
Jul202009

I'm So Happy For You

Babies are appearing everywhere, and the afternoon light is such that I expect for us to be expecting, too. The late-setting sun blasts through the windshield as I turn off the exit to my house. The angle of those rays are filled with meaning.

This is the season of my almost-fatherhood. This is the time last year when all I could think about was everything that I thought was to come.

There were so many plans and hopes in the works. Spring and summer were full of boundless potential and imminent adventures. The full bellies and multi-strollers all around foretold our amazing future, and I was thrilled to be on the cusp of fatherhood.

Fulfillment, success, perfection, they were within my grasp and now all I hold is dust and desolation.

Since it is impossible to grasp dust, and because desolation rots the soul, I have stopped trying to hold anything.

This has become my summer of the willing suspension of disbelief. I'm working hard at accepting the World as it is, and dealing with whatever is exactly in front of me.

I learned that from my parents. My mother has had MS since before I was born, and over the years they have shown me how to handle the impossible trials of their everyday life. Do the next thing first and then deal with whatever comes after that.

Do it right, do it with humor, don't stop until it's done. Don't rely on anyone else. Don't be surprised when it doesn't go at all the way you think it will. Don't give up and don't stop loving the people around you. Those are the lessons they taught me, and I'm working hard at most of them.

I'm stuck at Don't Give Up, though. I know there are people around me ready and willing to support me with their love, if only I would return an email or make a call. The ball is definitely in my court at this point. For phone-tag I am IT a thousand times over.

It is beyond me right now, though.

Reading through the interview below I was struck by how clearly I identified with all of those Phases, but I was surprised in that I seemed to be experiencing them completely out of order.

I feel like I've been through Confrontation and even a little Accomodation, but that Avoidance is where I stew these days.

It is a nuanced Avoidance. I don't stop thinking about Silas all day. I don't pretend that my life is anything that it is not. I know to the core of my being the depth of our loss. Or at least, I know how deep it seems to go from here. I have few illusions left at this point. I'm not avoiding his name, or the pain of losing him.

I am always ready to talk about Silas but I attempt to avoid all external reminders of what we should have.

That list includes: newborns, babies, people that just had babies or are pregnant, talk of the trials of having kids, strollers, carseats, first birthdays, the Internet, driving, walking and being awake. As long as I keep all of that out of mind & sight, I should be just fine. Ha!

Another part of the problem is that I'm starting to feel bad about how bad I still feel. I don't want to talk to friends because it's the same goddam fucking sob story every fucking time. I'm sick of hearing myself sometimes. I'm sick of hearing my soul's lament, sick of my mind devising strategies to fix our broken lives, sick of my heart oozing despair and ichor whenever another scar is peeled back, or a new, surprising wound pierces my defenses.

July was brutal. Three of my closest friends had babies this month and essentially all I could do was ignore them. Didn't stay in bed moping. Didn't drive off to the wilderness and leave everyone behind. Didn't stop working or playing or living. But when it came to those three, they were mostly out of my life.

I kept in contact until the day of birth, but after they each went perfectly, I had to cut them off for the moment. I feel like an asshole of the highest order, but I had to do it in order to save myself.

The idea of even talking to them on the phone to congratulate them, knowing they were holding their perfect new child in their arms, it took the push out of my fingers for every digit of their phone number. These are people I love and care about and all I can do is nothing.

I'm active and alert and fully engaged in most of my life, but the new babies are impossible right now. Once I start thinking about my friends, I think about everything they are doing with their new child and those thoughts completely immobilize me.

I know babies. I love babies. I don't mind the cheesy puke or the weird, wide alien eyes or the tears of hunger or confusion. I used to love babies.

But there is a period of time between birth and 'baby' that I really don't know anything about. By the time I've met most children they were at least a few weeks old, if not months, and I've never had that true newborn experience. I thought it was going to be a special, beautiful time with my son and first-born, but that was not the way it happened. So now, when I hear about a new child in the World, it fills me with a mix of hope and dread and joy and fear that is impossible to parse.

I'm thrilled for the parents. I'm thrilled the child is alive and healthy. I'm jealous beyond words that they have that child to cherish and nuture. I'm terrified by how close they came to living in my World without ever considering how bad it can get, and I'm enraged at myself for my inablity to do anything but look away.

All I can do is say how HAPPY I AM FOR YOU and look away, look away. I look away and try to feel Silas and hate how much his name sounds like Silence.

~~~~~~~~

What is your collateral damage? Where do you feel stuck? Are there certain aspects or phases of grief that you find particularly daunting? What do you avoid? What do you seek out?