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?

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?

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?

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?

In Your Head: An Interview with Dr. Sara Corse, Ph.D., Clinical Psychologist

Seeking help from a therapist in the aftermath of babyloss often raises conflicting emotions within the bereaved based on their preconception of grief, and of the psych-profession in general. "I'm not depressed, I'm grieving!" babyloss parents scream from their blogs, in defense of their decision to not seek outside help.

Maybe.

Do we really know the difference between the two sets of emotions? And why are we all worked up about seeing a therapist anyway? Does it signal that we're weak? Can't handle it? Need to take our ugly emotions inside, out of public, into an office with a shut door? Or (gulp) maybe we're even a wee bit crazy?

What about those of you who sought help and were confronted with professionals who told you to buck up? Who didn't understand what infertility and babyloss had to do with each other? Who glossed over the loss and focused on something else -- or vice versa, assumed the loss was the be-all-and-end-all to your problems? And you were left wondering: was it them, or me?

In order to try and clarify some of these issues I went directly to the source. Dr. Sara Corse is a psychologist who specializes in grief counseling and the author of Cradled all the While, a memoir of her experience in dealing with her mother's terminal illness. Dr. Corse sees individuals, couples and families at Council for Relationships in Philadelphia. (Disclosure: I, Tash, interviewer, saw a grief therapist regularly, until recently. I consider it on the whole, a positive experience.)

Tash:  Thank you so much for agreeing to this interview. How does one become "a psychologist who specializes in Grief Counseling?" That is, are there special courses or training that you do?

Dr. Corse: There are several professional pathways to working with people who are grieving. A grief counselor may have training as a psychologist, social worker, couple and family therapist or nurse. Grief is a normal life process, and as such is covered in courses on lifespan development. Therapists learn to work with both normal and complicated grieving in courses and supervised experience in counseling. Some programs offer semester-long courses in grief and there are many opportunities to specialize through self-guided readings, advanced supervision, workshops and conferences.

Why did you decide to go into this particular avenue of psychology?

I developed an expertise in grief counseling several years into my career, motivated by my own experience of loss. When I was 36, I cared for my mother as she was dying of cancer. I’d lost my father to a heart attack when I was 18, and I was struck by how different the two losses were for me emotionally. I have always been one to read everything I can get my hands on when I’m trying to process something distressing, so I read widely on death and grief. I also began writing what became “Cradled all the while” a few months after my mother’s death, and found the process of writing to be helpful, both in terms of my own grief and in terms of opening my interest in grief counseling. It is more than a decade since my mother’s death, and I now have a wide and varied clinical practice. About 20% of my clients come specifically for grief counseling and many others have had losses in their life that they have not fully grieved, and this becomes part of their therapeutic work.

I know I felt this early on (I no longer do) and I've seen it expressed by others: how do you answer the grieving parent who responds, "Well what do you know! Have you ever been through this?" What is it exactly that you can offer someone regardless of whether you've been through that particular situation or not?

It is common for people who are grieving to feel very alone with their experience. There is often a deep desire for connection with others who’ve been through the same thing, and at the same time, a wish for acknowledgement or appreciation that their loss is unique. I openly share with clients whether or not I have experienced a loss like theirs personally. In fact it is sometimes more difficult to work with someone who is grieving a loss similar to my own, because I have more of my own experiences to filter out in order to be responsive to the client’s emotions. What I try to offer all clients, however, is an open-minded curiosity and interest in their unique story of loss and a commitment to accompany them in their grieving process.

I know you don't want to start analyzing people who you don't even know, but are there any ground rules for how someone would know perhaps it's time to seek out this particular kind of help? I know a common refrain around here is, "Of course I'm depressed! My baby died!" and some people are just reluctant to seek out this kind of help due to monetary constraints, preconceptions regarding psychotherapy that were in place before their loss, or just not understanding the profession and what it can offer.

To understand when it’s time to seek grief counseling, it might be helpful to first have an idea of what normal grieving looks like. I like Theresa Rando’s model of mourning (grief refers to emotional, behavioral, physical and social reactions to loss; mourning refers to the work of processing and integrating the experience of loss).

She calls the first phase of mourning the Avoidance Phase, during which time the person in grief comes to recognize the loss. This includes acknowledging the death and working to understand the death.

The second phase is the Confrontation Phase, in which the grieving individual experiences the deep emotional pain of the loss. The work of mourning during this phase is reacting to the separation from the loved one through feeling, identifying, accepting, and expressing one’s emotions. It also involves identifying and mourning secondary losses that coincide with or develop as a consequence of the initial loss, such as the loss of the role relationship one had or would have had with that individual. During this phase, mourners recollect and reexperience the deceased and the relationship—reviewing and remembering their life, and reviving and reexperiencing the feelings engendered by that relationship. The person in mourning relinquishes old attachments to the deceased and to previous beliefs about how the world works.

The final phase of mourning is the Accommodation Phase. A new relationship is developed with the deceased, new ways of being in the world are adopted and a new identity is formed…one that incorporates the experience of grief and loss but is not wholly defined by it. And finally there is a reinvestment in life. The process of mourning a specific death can take place over many months and years, and may be revisited and reworked at different points throughout life.

This model of “normal” mourning serves as a backdrop for addressing complicated mourning. (I use quotes because the word normal seems to trivialize the pain of grief. I know that when I have been in mourning, nothing felt normal about it, and I wouldn’t have wanted anyone to suggest that it was). Complicated mourning is associated with several risk factors. These include specific circumstances of the death, such as a sudden, unexpected loss, death from an overly lengthy illness, the loss of a child, or the perception that the death was preventable. Other risk factors are related to the griever’s prior or concurrent condition, such as previous losses that were not fully mourned, high levels of life stress, depression and anxiety or a perceived lack of social support.

Grief counseling can help with both types of mourning, but is particularly useful in complicated mourning (or during complicated periods of normal mourning). So how does one know if it’s time to seek counseling?

One indicator that counseling might be helpful is feeling stuck—as with struggling to move from the Avoidance Phase of mourning into the Confrontation Phase. Denial is sometimes a cause of that feeling of stuckness. It is often a feature of the Avoidance Phase, manifesting either as not acknowledging the reality of the death or not acknowledging the feelings associated with it. Denial is not something we do, but something that happens—a natural psychological reaction which provides us with a time-out—a temporary delay of grief until we can gather the psychological resources necessary for experiencing the devastating pain associated with the loss. Although initially adaptive, if denial continues for too long, it becomes maladaptive and delays us coming to terms with the loss. Counseling can offer support in coming to acknowledge and confront the grief.

Another indicator is a persistence of depression or anxiety. Grief and depression share common symptoms, such as sadness, difficulty sleeping, loss of appetite and loss of energy. But in grief, our moods, such as sadness, anger, despair, or hopelessness, are triggered by sights, sounds, memories and thoughts about the loss. In depression, the symptoms are more persistent and pervasive. In grief, moods and symptoms change over time—from acute grief, which may be debilitating and immobilizing, to later stages of mourning when feelings can be bracketed—at least enough to function at work or at home. The feelings may not be any less strong and may still hit powerfully and unexpectedly, but they can be felt and expressed without interfering with overall functioning. In depression, bracketing is far more difficult. Mood and energy are more consistently down.

In terms of how long is too long for feeling depressed during normal grieving, some professionals use two months as a marker. On the one hand, I think 2 months is too short a time to diagnose depression in someone who is grieving the death of a child. On the other hand, if someone is struggling with feeling depressed, and having trouble resuming normal activities two months after the death, therapy can be such a helpful tool that I encourage it even if it is a part of grieving and not depression.

We've all been told at least from within this community that grief is a normal life process, and there is no wrong way to grieve. What benefits are there then to seeing a therapist as opposed to, say, duking it out on your own?

Here are some things clients have shared with me about how therapy has been helpful for them:

* feeling validated, feeling heard, feeling listened to

* feeling not alone: being able to reflect on and express their feelings with another person rather than keeping them inside

* not feeling blamed or judged

* appreciating that they don't have to reciprocate with the therapist--they don't have to take care of or listen to the therapist's feelings. They don't have to prove to the therapist that they will be okay. They don't have to take any responsibility for making the therapist feel like he or she is being helpful.

* being able to talk about the experience as many times in as many ways as they want or need without worrying about being a burden.

* being able to ask questions and get feedback and learn a framework for understanding their experiences that can support them through the phases of mourning.

* being encouraged to explore feelings that they may shy away from with the support of the therapist, and thus learning how to tolerate these emotions as they come and go during mourning.

* having a space to grieve that feels safe and where time and expectations don't (or shouldn't) matter.

* being able to talk about their feelings about or worries about other family members confidentially, and explore in therapy ways to address them.

* with couples, helping partners understand and appreciate the different ways people have of mourning, and learn to support each other and stay connect through the grieving process.

* having a place to explore other issues that are kicked up by the loss and may be important to address at this point in life.

Do you have any suggestions on "finding a good fit?" I feel as though I rather lucked out, although I did look for someone who specialized in "grief." Others in these parts have not been very fortunate in finding doctors that they feel are helpful (some sound downright oblivious to the basic issues surrounding infant death). What should we look for when we go in the first time (or few times)?

* someone who makes you feel comfortable telling your story and sharing your feelings.

* someone who has some experience with working with grief.

* someone who communicates an interest and curiosity in you.

* someone who will answer your questions, even if they come across as challenging, without being defensive or dismissive.

* someone who will engage with you around questions of fit, and doesn't suggest that he or she is the only person who can help you.

* someone you respect.

* someone who respects your boundaries—not imposing their beliefs or experiences on you and not pushing you before you have developed trust.

Along the lines of "there is no wrong way to grieve": It seems to me that, sadly, for some members of society at large there are indeed "right ways." It's not uncommon for us to occasionally get comments to the effect of "hurry it up already," or, strangely, "You need Grief Counseling!" One of our contributors (Bon) recently wrote a hospital to ask them to change the language on their fund-raising literature as she found it offensive to someone who had lost a family member at this institution. The campaign went public, a newspaper picked a line out of Bon's argument, built a story around it, gave it a controversial title, and then posted it on the internet -- and opened the comments. The public comments were stunningly offensive in my mind, one of them though told Bon to "Get Grief Counseling."

I thought that was a rather strange insult; it seemed to be indicating that the commenter was uncomfortable with Bon's emotions and that Bon was better off dealing with these feelings privately (preferably in an office with a doctor present, apparently) -- not publicly. But it also really tiptoes the line as to how the public at large views therapy, and it's worth.

Our society does communicate a strong message of intolerance for the wide range of feelings that grief entails. Tears and sadness, maybe. Anger and advocacy, not so much. And our society follows up the intolerance for the full range of emotions with intolerance for any of those emotions that last longer than a few days or weeks. Bon handled the whole situation, from beginning to end, with grace and balance. She was attuned to the impact the hospital’s fundraising letter had, not just on her but on any parent who’s baby did not survive, and took action to raise the level of awareness and sensitivity of the fund-raising world to this point of view. The public comments suggesting that Bon get grief counseling miss the mark. In fact, a healthy processing of grief often leads to an action such as Bon's. When we have done (or are doing) the work of mourning, we are able to speak out regarding the universal truths of grieving and loss and can advocate for societal change. When we embrace the full range of feelings that loss brings to our lives, and integrate our most painful experiences into a new way of being in the world, we find energy for transforming our experience of loss into something positive for others.

What do you see as the biggest hindrance to grieving?

I don’t think there is one big single hindrance, but there are several roadblocks, some internal to the person who is grieving and some external. Earlier I mentioned denial. It is the persistence of denial, not its early existence, which proves problematic. If we cannot sustain knowledge of the fact of the death and the irreversibility of the death, we cannot mourn. Another hindrance to grieving is the inability to gain necessary information to answer questions about how and why the death occurred. We often hold off on feelings of loss until there is greater understanding.

External hindrances include the impact of commonly held myths about mourning, such as the notion that grief follows a set path or sequence of stages, resolves in a matter of months or comes to complete resolution. Another external hindrance for parents grieving the loss of a baby is society’s tendency to minimize the loss. In fact, grieving the death of a child means not only experiencing the loss of the brief relationship, but also the loss of potential, about which they are continually reminded. The perpetuation of societal attitudes about grief makes it hard for people in mourning to acknowledge their feelings, both to themselves and to others, to be patient with themselves and to seek and gain support from others.

What then do you see as the most helpful thing (or things!) one can do to process grief?

In terms of denial, there are various experiences early on that can help grievers acknowledge the death and begin to experience and express their feelings. These include having the opportunity to hold or touch or view the body of the deceased, and to participate in rituals that acknowledge the death, such as a funeral.

As the process of grieving continues, it helps to talk about the death and any feelings, and to find people who are willing to listen and ask questions.

Participating in a support group with people who are experiencing or have experienced a similar loss can be helpful for exploring and validating feelings. This includes on-line support groups.

It helps to create rituals or memorials that are meaningful. Some people plant a tree or garden, donate to a cause, or launch an initiative in their loved one’s memory, enacting love and the pain of loss in a way that benefits others.

And as we’ve discussed, grief counseling is helpful, particularly when we feel stuck or alone, when we are experiencing a complicated period of grieving or when we have an inner sense that in processing this loss, we are provided an opportunity for making other important life changes in therapy.

How do you feel about online support -- like this site -- or blogging as a means of self-help?

I think it is a fantastic medium for several important processes of grieving: The work that people do in writing about their experiences, whether blogging or commenting on other people’s posts, is transformative. The writer must engage her or his emotions in the crafting of a post, which then offers both an expressive outlet and a mode of working through the experience that deepens personal understanding and connection to the experience. In posting on the internet, writers have an immediate outlet for sharing their experiences with others. Because there is an intended audience, the emotional, intellectual and creative work of blogging is different from personal journal writing—in considering what one wants to share publicly, the writer’s perspective is lifted to the universal (or at least in that direction). This process of moving from the personal to the universal is something that gradually happens during the process of mourning, and writing for an audience facilitates it.

Blogging also offers a wonderful way to network with others who have experienced something similar. Particularly for those who are new to grief, being able to read and comment on posts by people who are further along in their mourning can be very validating. For parents grieving the loss of an infant, being part of a blogging community is a way to create a set of loving relationships around oneself and one’s lost baby. Sharing grief this way brings meaning to the baby’s short life, and when others in the blogging community respond to or even anticipate one’s own grief reaction, the grieving parent feels far less lonely.

The one caveat I would mention about on-line communication is that it is different from face to face communication in terms of how people filter emotions, opinions and reactions. On the one hand, people may hide certain reactions and reveal other reactions in order to gain social acceptance or approval. On the other hand, sometimes people are inappropriately unfiltered in their reactions, such that they say things and say them in certain ways that they never would if they were face to face (internet bullying, perpetuating conflict and misunderstanding, etc.). So I would encourage people to continue to nurture supportive face-to-face relationships for grieving as well.

Have you sought out therapy in the aftermath of your babyloss?  Why or why not?  Did you find it useful/helpful?  

 

Regrets, I've had a few

I saw her literally the moment I found a seat, on the floor in the very back of the room-- I was late and the room was full. I hadn't expected to see her there. I hadn't really expected to see anyone I knew there. It was a talk on raising bilingual children, held at my old Alma Mater, where I also worked for several years, until the summer after A died. I'd forgotten her husband's first language wasn't English. But had I remembered, I'd still not have expected to run into her-- I would've assumed that she'd graduated already. Instead, there she was, having made it to the talk early, judging by the seat she had-- one of the best in the house. 

Casey was a TA in the class I ran the spring before A was conceived. About half way through the semester I began to suspect that Casey was pregnant. About two thirds through, her bump made all speculation mute. She was a good TA, even if not particularly an extra mile kind. But then again, in hindsight it's tough going an extra mile through the early pregnancy while you are TAing a big class and working your tail off in the lab too.

The moment I saw her was palpable, a mini lightning bolt; in my head, certainly, but what felt like inside my chest cavity too. Way beyond your standard issue butterflies, this was real anxiety-- throat grabbing, stomach tying, air rarefying split second of oh, crap, I'm so not ready for this. I wasn't sure if she knew, and thought that she likely didn't. I was pretty sure she knew I was pregnant, though-- I remember running into her that fall, right as she came back from maternity leave. By that time I myself was unmistakably round, and going to the bathroom so many times during a workday that I was sure that alone fulfilled my daily exercise requirement. So that's where I ran into Casey one day that fall, and that's where she filled me in on the somewhat complicated childcare arrangement they'd hobbled together for her son, who she was totally in love with, and that's where I told her I too was expecting a boy.

There are certainly people who saw me pregnant who didn't remember later. In their defense, those people were meeting me for the first time then. Casey, on the other hand, knew me before. I was pretty sure she remembered. I know, I know-- unless you are a celebrity, and TV takes care of announcing your comings and goings, chances are there will be people who won't be up on your news, fresh and not so much. And there will be new people you meet who won't know. And so from time to time you will be in a position to decide whether or how to tell someone that your child is (or your children are) dead.

Telling people is a staple of our early days as bereaved parents. It's a large part of why many of us would rather not leave the house. But somehow we do (tell)-- often we send emails, or ask friends to pass the news on,-- and at some point we do (leave). And eventually the telling, if it happens, is mostly to the people who didn't know us before. To them our babies become dead a split second after they first come into existence as mental images, right after everyone's favorite word-- but. "I had a baby, but..." "We had twins, but..." "I was due in December, but..."

These hurt, of course. They hurt a lot. But they hurt differently than the early tellings. A while ago, Natalie talked about the early ones, about how when you do that, you get to see someone else's joy and anticipation for you shatter, the might've been crumbling into is. Again.

When I saw Casey from my ground-level seat that day it occurred to me that she just might be the very last person to have seen me pregnant who still didn't know. Sadly, it didn't make me better at telling her. Worse, it didn't even make me more prepared.

After the initial shock, I forced myself to concentrate on the talk, even though I kept stealing glances at Casey. She was knitting. Obviously listening, but also knitting. Which, I understand, betrays a certain level of skill. During the Q&A session, I asked a question, guaranteeing that if Casey hadn't noticed me before, she obviously would now. (Yes, not one of my brighter moves, I know.) Meaning that after the talk was over, I had no choice but to say hi, especially since the speaker was enveloped in a small crowd, and I was waiting until that receded so I could buy her book.

I'm a kind of parent that generally speaking does not do guilt. I make decisions and live with them. But that doesn't mean I don't have regrets. And I definitely regret what happened next. Because? I screwed up.

We started talking. About grad school (she hoped to finally be done this year) and work (I filled her in on where I've been), about the whole bilingual kid thing (she asked how well Monkey was doing with the Old Country language, and then how we managed to hold on to it so well). I asked about her son, and she told me they are having trouble because her husband, the one who speaks the foreign language to the kid, gets home on the late side. She used her son's name when she was telling me this. Same as A's middle name. I knew that, of course-- she's mentioned it a bunch of times, most notably that one time in TA meeting when everyone was teasing her about the possible nicknames, and she drew the line at one that, I admit, would've bugged me too. So I knew it, but it wasn't at the forefront of my mind right then, and so it packed a bit of a punch for me.

Maybe that's why I screwed up, because I was still off balance when the next question came. "So how old is your younger one now?" Or maybe I screwed up because of how the question was phrased, quantitatively, especially since we'd just listed Monkey's age, and her son's, causing my numbers-oriented brain to want to account for the Cub's age too.

What I said was "He died." And after the properly horrified I am sorries from her and her husband, and the short version of stillborn, 34.5 weeks, "But we also have a three and a half months old now."

I regretted it almost immediately. But? But? What the hell was I thinking when those words left my mouth? Spotlight shifting, minimizing, covering up the dead baby with the live one. Am I not the very person who insists, sometimes very loudly, that my sons are separate and distinct individuals, not to be confused or conflated? What I should've said was "A would've been nearly two now. Sadly, he died. We miss him every day, and love him always. We also have a new baby, who is three and a half months old. He is a joy, and we love him madly. But we still miss A. At this point, we are pretty sure we always will." There. Would that have been so hard? She asked about A, about the baby she knew about. And my answer should've stayed focused on him.

I spent the drive home thinking about what I should've said. I obsessed about it almost nonstop for several days after. It wasn't just that I minimized my own son-- the very thing that drives me crazy when done by someone else,-- I worried that I left a wrong impression about babyloss in general. I worried, and still do, that the way I spoke left the impression that the cure for dead baby blues is a live baby. An all too common misconception I am afraid I might've reinforced. Really, Julia, "but"? Real nice. Real smooth.

I considered emailing Casey to tell her what I should've said in person, and to tell her why it was bothering me that I didn't. In the end I decided it would be too weird. I still think about it, though, seven months later.

 

How did you tell people early on? Have you had to tell since? How does it feel? If you are that far down the road, how do you decide which of the new acquaintances to tell? Have you had your own Casey-- a person who last saw you pregnant? How did you handle that?