sad book

While in Kauai (before the flooding) Leif and I stumbled upon a used book sale at the local public library.  We nabbed about ten books for Clio, which helped us get through the next four trapped days without losing our minds.  Most of the books we grabbed we did solely based on the cover art because it was crazy crowded and Clio was getting fussy.  This one was a surprise.

Obviously it is too old and too heavy to read to Clio anytime soon.  I think one day it will be a good tool to use to explain to her about her brother and how sometimes her mom and dad feel sad.  

*I did a little research and learned that Michael Rosen's 18 year old son died from bacterial meningitis.  I recognize so much of my own grief in this book.  Death is death and sad is sad.  You know, what I mean?


Michael Rosen's Sad Book

on the two year anniversary of the birth and death of my son

In the beginning my grief was raw, raging and so very, very ugly- a jagged piece of stone with edges so sharp that it would cut, scrape and produce scarlet droplets of blood from whatever tender piece of flesh it came in contact with.  My own skin or that which belonged to someone else, it didn't matter, it was an equal-opportunity slicer and dicer.  It was nasty and it hurt.  But it was my truth and I owned it -or maybe it owned me- because other than my husband it felt like the only real thing in the world.  Everything else was made of paper and string.

It was cold hard disbelief that composed the majority of my early grief.  Disbelief that he was gone.  Disbelief that there wasn't anything I could do to remedy the situation.  Disbelief that something this terrible had happened to me.  After all, I had never before been in a situation that I could not in some way or another wriggle out of, work my way out of, or more commonly, luck out of.  I had lived the first thirty years of my life in relative security that nothing too bad could ever happen to me because, well, I was me.

Time rolled on and as the hideous truth began to settle into the farthest reaches of my mind where denial had its last strongholds, misery and regret were the dominant players.  I replayed events in my mind on a loop, looking for the junctions where my current life crossed with my old one.  It was in a parking garage where I pushed back an appointment with the perinatologist.  It was when, after taking the digoxin and flecainide for the hundredth time, I immediately vomited all over our bedroom floor and starting crying that I couldn't do this anymore.  It was when made the decision to stop treatment after his heart rate returned back to 250.  It was when, as they were prepping me for the emergency c-section, we asked for the neonatologist to come talk to us again about what his chances for survival and a normal life were going to be like should we choose life saving measures.

So many choices.  So many possible different outcomes.

I still wonder about the choices we made during those five weeks but it doesn't consume me the way it used to.  I've mostly resigned myself to the belief that had we made different choices things may have turned out for the better but they also, and most likely, could have turned out for the worse.  There are outcomes far more terrible than holding your baby while he gently dies.  I truly believe that.  Of course now I have a beautiful daughter and it feels unfair to her to wish that I had made different choices.  He died and she is alive.  Try as I may to believe it to be true there is doubtful an arrangement of choices I could have made that would grant me the existence of both my children.

These days though, I mostly grieve alone over his loss and the trauma of what happened.  For the onlooker two years probably seems like an eternity to hold on to so much sadness over a baby who I never even took home with me.  Especially when I have a living, breathing, growing baby at home now.  But I relive the trauma of making those choices and watching George die on an ongoing basis.  It is not something easily forgotten and it isn't something that having a subsequent living child negates.

So my grief is quiet.  I've grown accustomed to shouldering the majority of the work in remembering him.  While there are some in our life who still remember there are many more who either have forgotten or lack the courage to bring him or our experience up in conversation anymore.  The truth is I understand that very few people could possibly miss him the way we do; our parents, my sister, a couple of close friends feel his absence.  I don't hold that against anyone.  I really don't.  There is no anger.  Just loneliness...and the wish that more people could understand that what we went through was more than just losing a baby at 29 weeks.  We live with the trauma of lengthy hospital stays, my body being pounded to a pulp by medication, emergency surgery, making the choice to let our child die and then watching that happen.

I think it only gets lonelier with time.

But it also gets easier.

I feel pretty good most days now.  My life is full of love and wonder and excitement.  Clio brings me more joy than I ever thought could be possible and I am overflowing with gratitude that she is ours and that I get to be her mother.  Everyday she starts to look a little more like her father and it gives me pleasure to see the man I am so very in love with reflected in the face of our daughter.

I am grateful for George even in the midst of all the sadness and longing I carry around with me.  The girl I was before is gone and although there are times when I also fiercely grieve her demise, I like this version of me more.  I am kinder and gentler.  I've gained more empathy for the pain of others.  I am most certainly wiser.  I feel less entitled and more appreciative for the people in my life.

George has taught me to take nothing for granted.  So today, on the two year anniversary of my son's birth and death, I am going to hold close to my family, escape to the mountains, and be thankful for the life that his existence prepared the way for.



*Thank you to everyone who has sent emails remembering George on this day.  This community makes my grief less lonely.  You are all amazing and I am tremendously grateful for each and everyone of you.

welcome to the club

Some days I feel like an ordinary mother.  I go about my day as any other parent of an infant does; kiss her, change her, kiss her, feed her, kiss her, burp her, kiss her, dress her, kiss her, play with her, kiss her, put her down for a nap...you get my point.

Other days I'm reminded that I am not totally just an ordinary mother.  I'm also the parent of a dead baby.  I'm someone who knows too much about the subject of death and grief and infant loss.  I'm someone who knows what it is like to be completely incomplete.  I'm someone who misses her child with a wild intensity that few other people can ever truly understand.

Yesterday was one of those days...

The newborn sister of one of the toddlers at Clio's daycare died over the weekend.  It wasn't unexpected as she was born with a genetic issue that is considered "not compatible with life."  In fact, the parents had fully expected her to be stillborn but they made the choice to carry her to term anyway, a decision I can relate to since Leif and I basically made the same one after we had exhausted most of the medical interventions available to us.  But the baby surprised them all by being born alive and then staying alive for three weeks or so.  From what I understand -I have never met these parents so all of this is secondhand information- they were able to take her home from the hospital and spend those weeks together as a family.

Leif let me know as soon as I got home from work yesterday and I was immediately back in those early days after George died.  The despair, the chaos, the helplessness...I could easily imagine everything that these people are probably feeling.  And I thought to myself when I heard the news, now they are some of our people- the parents of a dead baby.  New members of one of the saddest clubs in existence.

I am trying to decide if, when and how I should reach out to this couple. I don't want to overstep my bounds as I have never met them.  Hell, I don't even know their names.  Do I give them a list of resources; online forums, grief support groups, my phone number?  Do I send them a card via the sitter?


"So very sorry for the loss of your baby.  Welcome to the club."

work in progress

I make an attempt to weave the two together; the time in between and the now.  A need to make them make sense together, somehow, to learn to live in both at once.  My daughter in Chronos.  My son in Kairos.  I hold his pictures and trace his face and at the same time I feel my daughter stretching her life against my breast.  The two seem so very far apart and I wonder how it is ever possible to bring them together, my two children, without having to exclude one or the other.

One so undeniably alive and present.  The other so undeniably dead and missing.

I haven't figured this all out; how to be a good parent to my living child while simultaneously attempting to keep the memory of my dead one from also dying.  Sometimes the thought crosses my mind that I should do just that; let his memory die and go into the same oblivion that he did.  It would be easier to forget and to let the spinning of the world propel me with its forward momentum.  I look at my daughter and often feel the compulsion to clip her brother's name from my tongue when it hangs there, waiting to be said.  As if still longing for him somehow detracts from the love I have for her.  Can I really give all my love to this child wiggling in my lap while sometimes still wanting to live in that in between time when her brother was still alive.  Twenty-four minutes almost 18 months in my past.

There are still many times when I am in the shower when I cry out for him.  I beg and plead to have him back.  For just a day.  For just an hour.  To get to know him in the same way I know his sister.  Not as the sick and dying baby in the sterile operating room or as the cold and still one in the recovery room but as the pink and living baby I hold in my arms now.  A glimpse of what he could have been had things only turned out differently.  I cry out that I want to feed him, to bathe him, to feel him against my skin.

But I keep my cries to myself, mostly.  I fear judgment.  I've always feared judgment from people who maybe think I am hanging on too much or that I need to let go of the past.  I fear people thinking that I am incapable of mothering this living child because I can't tear myself away from the dead one.  I fear people thinking to themselves, "Isn't she over this by now? He wasn't even a real baby yet."  I fear people making a judgment that I must be depressed simply because I still miss my son when in actuality I am very grateful for the life I have with my husband and daughter.  As I said in my last post, they are my light and I know how very fortunate I am to have them lighting up my world.

The fear of judgment isn't totally unfounded as I have come to learn.  I hear the judgment in subtle tones from people we know.  It is often so subtle I don't think those from which it comes even would realize it themselves.

"Now that Clio is here you can move on from the pain of losing George."

I also hear it in the silence.  His name is hardly ever uttered.  I cannot recall the last time someone, other than baby loss parents, asked us how we were dealing with our grief over George since Clio arrived.  Her arrival and his absence are intwined for us in ways that other people just rarely acknowledge.

I fear even writing all this here for the possible judgment that some may have.
She has a living child now, why is she still writing about this?  She should be grateful for her daughter.

I don't want George's death to overshadow the life of his sister.  She is celebrated every moment I am breathing.  I love her completely and I recognize how fortunate I am to have her .  I take not a single cry or fussy moment for granted.  But I also don't want her life to negate the importance of her brother's.  How to keep that from happening I am not sure.  I guess it is just a work in progress.

the laughing heart

Yesterday Leif shared with me a poem by Charles Bukowski.  Seldom does it happen that I come across a piece of writing that strikes me so deeply to the core that I feel like I must memorize it so as to never forget its message.


The Laughing Heart 


your life is your life
don’t let it be clubbed into dank submission.
be on the watch.
there are ways out.
there is a light somewhere.
it may not be much light but
it beats the darkness.
be on the watch.
the gods will offer you chances.
know them.
take them.
you can’t beat death but
you can beat death in life, sometimes.
and the more often you learn to do it,
the more light there will be.
your life is your life.
know it while you have it.
you are marvelous
the gods wait to delight
in you.


Over the last two weeks I have felt much of that darkness again, not that it ever entirely left.  Having Clio here has been magical but it has also crystalized for me what exactly was taken away from us when George died and that has been difficult for me to internalize again.  I just miss him so very much and can't really fathom how I will never have him again.


Yet this poem has helped to remind me that I can choose to live out my days in the darkness of circumstance or I can choose to look for the light, wherever it may come from.  The darkness will always be my companion but I choose whether or not to let it consume me.  As Clio grows up I want to share with her the existence of her brother so that from his story and ours she will learn that even in the darkest moments of her life -and surely there will be moments that seem black as night- there will always be at least a small shimmer of light, even when it feels like all of the light in the world has been stolen away.  


And surely there is so much light.
My Leif. 
My Clio.  

My life is my life and I will know it while I have it.

(un)fair

We went to the second and last birth class this morning.  The class concluded with a video of a c-section, complete with a screaming newborn baby at the end.  It was pathetic how much our experience having a c-section was the antithesis of what we saw on the screen.  While it looked almost exactly the same, at the end of our version we were not handed a crying baby but rather a silent, barely moving one, whose sweet little face was swollen because of his heart failure.  After watching the video I held it together long enough to get outside of the building before having to stop on the sidewalk to sob.

We did not go on the tour.

It never really stops, the trauma of living after the death of your baby. It just goes quiet for stretches of time.

Have I ever mentioned that when we were initially in the hospital with George a few rooms down from us a certain B list actor, who has been arrested for drugs and for abusing his (many) wives on multiple different occasions, was there with his girlfriend (25 years his junior) who had just delivered their healthy son?  Leif walked back into my room after getting me more ice chips, since at the time I was pretty much vomiting everything but ice chips up, and told me about seeing this guy obviously pretty excited while talking on the phone out in the hall.  I think I said something along the lines of how completely unfair it was that some fuckhead who drives drunk, has been in and out of rehab, who has been married quite a few times to women much younger than he, and who just generally seems to be a douchebag, gets a healthy baby while we get a dying one.

It wasn't fair.

Driving home from the class I kept thinking about that particular actor, his now 15 month old son, and the unfairness of George's short life and -eternal- death.  I came to the following conclusion. 

It isn't fair.  But life isn't fair.  It never has been.  I had just been lucky up until that point to have escaped rather unscathed from the unfairness of the world.  People worse than that particular actor have healthy babies all the time.  Murderers get away with murder all the time. Thieves call themselves business men, robbing from the poor while stuffing their own off-shore accounts, all the time.  Good people don't have enough to eat all the time.  

It isn't fair.

But neither is it fair that I have a wonderful relationship with my husband while some women are in abusive ones.  It is not fair that I have a good job while there are others who have worked equally as hard as I have, if not harder, who are jobless.  It is not fair that I live in a country where I am, as a woman, completely free to wear what I want and to go where I want, why others live under the thumb of oppressive religious patriarchies.  

It isn't fair that George died.  But it would not have been somehow more fair if my son had lived and the son of that stupid shit actor had died. Neither child deserved life more than the other.  George just happened to get the short end of the stick.

What is fair and what is not fair have no bearing in this world.  Fairness is the exception while unfairness is the rule.  We are surrounded by what is unfair and it is miraculous that there is any fair at all.  This is a concept that I have just now, just today, really begun to understand.  

George died and it isn't fair.  George died and while I can never accept it is as OK that he died, I can accept it is as OK that it isn't fair that he died. I don't feel like I need to rail against that concept anymore and believe it or not, that kind of helps.

where i am is right here

I’m alone, in the most literal sense of the word and it is usually then, in the solitude, when he comes to me.  I mean, of course, he is always there in my periphery – a wavering figure against the backdrop of everyday life.  But when I am quiet and alone my vision focuses and his blurry outlines solidify.  I’m tempted to pull out his three photographs and let myself sink into the familiar darkness.  There are times, like this moment, when his absence fills up the entirety of my being.  

We’ve just returned from a visit with Leif’s family in Oregon and the jolt of living in the truth of his death has left me reeling.  In those few days it became all too easy to imagine a reality different than the one we have been given and almost unbearable to live in the one we have.  

I still want to say his name and tell his story but I am finding it more and more exhausting emotionally to allow others to participate in –and observe- my grief.   The more time that passes the more uncomfortable I am in letting people see just how broken I still am, because this is the part in the screenplay when everything is supposed to start  wrapping up in a satisfying way for audience members.  This is the part where I should start expounding on the gifts that his death has brought me; a greater sense of sympathy for the world at large, a greater sense of appreciation for the beautiful things in life, a greater sense of self.  Maybe that is all true in one way or another but right now, at this very moment, I just want him back.

What I do know for sure, and maybe for now this is enough, is that I’m one year and forty-seven days older and in that time I have somehow managed to haphazardly stitch myself together into a whole person again, or at least a reasonable facsimile of one.  I'm not what I used to be, and certainly on days like these that shows more clearly than usual.  I’m threadbare in places, with oversized button eyes, mismatched threading and dingy cotton stuffing that peaks through in places and for which I am constantly trying to sneakily push back in less someone see just how shoddily I’ve been put back together.  I’m whole –as complete as I can or ever will be- but if anyone were to look closely enough just how timeworn I am would be apparent as would just how much I still miss my son.

*Thank you to Angie for bringing this project to life.

amsterdam

Last week Leif and I went to Amsterdam to visit friends, N and M.  It was kind of a last hurrah before I start work on Monday and before our friend delivers her son in another week or so.  We probably won't seem them for another year so we really felt the push to make the trip while we still were able to do so.  Our friends were troopers to have visitors there so close to the impending birth of their first child.  Even at 38 weeks pregnant, N was pretty adept at keeping up with the rest of us.

The trip was very easy and incredibly difficult at the same time, as I am sure most of my "readers" can imagine.  Easy to be with our best friends (including another couple who flew in from Hawaii for a 48 hour period just to hang out with the four of us since they get free flights) but difficult to be around an atmosphere of baby-ness for such long stretches of time.  Hours and hours would go by and I would be having a great time, the way I always used to when together with old friends, only to be struck by some random thing and be immediately yanked back to my reality.  I would recover from the jolt and the cycle would begin anew.

On the 31st of this month it will be ten months since George was born and then died.  During this time I've done a fairly good job of creating for myself an insular world where the idea that other people frequently have healthy pregnancies and living babies does not often penetrate.  I can't say for sure if that has been an entirely healthy way of living but I can say that for a long time it was a necessity for me.  Yet living in such an insular world cannot last forever and I think it was important for me, in more ways than one, to make this trip. 

Many times during our trip I felt completely separated from what was going on around me.  I watched and listened to our friends have lively discussions about birth plans, birthing experiences, and parenthood but I don't think I was ever really engaged in any of these conversations beyond the superficial.*  The pregnancy and birth experience that Leif and I had simply does not bear any resemblance to those of most people.  I can't really relate in any meaningful way to their experiences and so while most times I was comfortable and at ease with these topics I never felt like a participant in them.  An observer from across the great grief divide.   Many times I just listened because what I could/would add may not have been appropriate to the discussion at hand.

An example...

I had a brief discussion with N about the American custom of baby showers versus the Dutch custom of sending out announcements only after the arrival of the baby.  I immediately thought about how much I preferred the Dutch custom to the American custom because it circumvents the problem of what to do with all the gifts if the baby dies.  Normally I keep such thoughts to myself, especially when it comes to sharing them with a very pregnant woman, but I blurted out what I was thinking and effectively killed the conversation.  As much as N and M try to temper what they talk about in relation to the birth of their child, I also try to do the same.  Usually I'm more successful than that.

But I learned through this experience -and here I am referring to both George's death and this particular trip- that I am never going to be able to look at things like pregnancy, birth and parenthood in the same light again.  The pure joy and excitement associated with these things has been rinsed away and what is left is what I think of as a patina.  I've weathered.  

Leif finally sorted through all of our photographs from the trip.  As I was looking at them again I was struck by how impressive it is that photographs are able to sum up experiences and emotions.  

 It never ceases to amaze me how many versions of myself exist inside.

Some, I'm sure, that are still left to discover.

*Important to note here is that our friends are all very cognizant of our feelings and make their best effort to always consider them.  I can imagine how uncomfortable it must also be for them since they are probably never certain where our limits are.  They do a great job and I try also to do the best I can for them.  I am genuinely happy for them and wish them a very easy birth and nothing but joyful days ahead.

the year of the rainmaker

The world hums.  A vibration of life and the passage of time and I feel it resonating in my bones.  The only two things to be sure of in life are change and death.  One inevitable and the other unavoidable and permanent.  Oh yes, and it is the permanence that is the very heart of every tear and every wail and every silent scream for the rest of my life.

Awaking in a new place for the first time this morning- change.  But the first thought in the lightening blue of dawn is a familiar one; how could this have happened to him?  Followed by a new one; today he died this year but tomorrow he died last year.

And "last year" seems so far away.  So very dead for so very long and so very long just keeps getting longer.  The slow progression of afternoon shadows, growing until the night comes to absorb them.

This year.  For eight more hours it is still The Year of George.

to remember him

I went to buy toys today to give to the Children's Hospital in memory of George for the Holidays.   It is something that I think I will be doing every year and with toys for whatever age group he would be a part of.  I bought toys that were age appropriate for both nine month olds and for six month olds because I can never seem to reconcile in my mind how old he would be right now if he had not died.  Six months if his heart had never started beating too fast or nearly nine months had by some enormous stroke of luck he survived after having five weeks of heart failure and being born at 29 weeks gestation.

I walked around those aisles for a good twenty minutes, glassy eyed, before deciding on three plush crib toys that play music when their bellies are squeezed.  I tried to imagine them in the cribs and bringing some fun to their recipients but I had a difficult time going to that place in my head.  Parents zoomed around, stuffing toys in their carts, and I just stood there on the verge of tears the entire time.  I don't even think they noticed the sullen-looking woman with three stuffed animals in her arms and tears in her eyes.

Then I got home and made the mistake of getting on one of those birth club message boards for June 2010.  I was feeling particularly masochistic and wanted to see what all the other babies who were born when George should have been look like and what they were doing.  It was like pulling the curtain back for a brief moment on that alternate life of mine.  I didn't stay long.

After today I am not feeling so brave any longer about the actual trip to the Children's Hospital to drop off the toys.  It isn't a hospital that I associate with George as he was born in another hospital miles away.  But my fear is that when I hand it off to the volunteers they will want to make small talk and I will burst into tears.  Spontaneous human combustion.  Only with tears and snot instead of with fire.  But I will go anyway because it is so incredibly important to me that I do something in his memory this year.

I want to say thank you to Susan, Jenn, and Jennifer who all made ornaments for George this year.  They are so beautiful and because we don't have a tree this year they are sitting on our mantle where I can see them everyday.  Thank you for remembering him and doing something for us to acknowledge his life.  Leif and I both need that acknowledgment so much.

ghost in the kitchen

I got up this morning and helped Leif get ready for work- made him breakfast and ironed his shirt.  He cleaned up the kitchen for me before I got out of bed so it was a fair trade.  After he left I showered and then promptly crawled back into bed.

It is now 1:00 in the afternoon.

I am still in bed.

I feel like there are so many things to take care of and worry about right now that I've made the unconscious decision to turn them all off.  I feel like a circuit has been shorted out.

Click.  Hum.  Silence.

I watched an episode of television while laying in bed and the last scene was of four adult siblings -all with families of their own- hanging out and laughing in the kitchen after Thanksgiving.  In the corner, unbeknownst to them, was their mother quietly observing them and obviously quite proud.   

My "what would he be like" visions used to only go so far- two or three years in the future.  A blond-headed toddler with muddy knees and ruddy cheeks.  A freckled face turned up to ask a question for the thousandth time in one day.  A smile that reminded me of his father.  Now those visions stretch far ahead and I wonder what kind of man he would have become.

Would he have been close to his siblings?
Would he have been a traveller?
What would he have done with his life?
Who would he have fallen in love with?
Would he have had children of his own?

I don't think that these questions will ever go away.  Even if I am lucky to have children in the future and they are able to grow up into adults.   I will forever be the woman observing from the corner her adult children hanging out and laughing in the kitchen, quite proud of them.  But also squinting to see the ghost of their older brother and wondering about the man he would have become.

I don't want to be that woman.  I don't want to carry this around forever.  It is very, very heavy and I am so incredibly tired of this grief.  I want someone to take it away for awhile.  I want to feel, even just for an hour, like the person I was before March 31, 2010.

walking the Grief high wire

In my last post I inadvertently touched on a very sensitive subject.  Well, actually I knew it was a sensitive subject but I thought I did a pretty good job at explaining myself about being faced with the challenges of participating in other people's lives when it comes to pregnancies and infants while also grieving the loss of a baby.  I am red-faced because I did not do such a great job of explaining it at all.  I think now, in hindsight, that the explanation and the feelings behind that deserved their own post entirely.

If grief was an object, it would be a high wire (if it was a person it would be David Bowie).  You start out from one end, marked by the death of your child, with no one giving you any real direction on how to traverse the Grief high wire.  You are not given a balancing pole or special shoes or even a net, although occasionally you get to a point where you can rest for a moment before you have to be on your way again.  Despite this you go forward because otherwise it means being stuck or worse yet, falling to your death below.

As the walk lengthens and time passes you become aware of what exists on each side of the Grief high wire.  On one side, should you fall, you would fall into the deepest despair and depression imaginable.  On the other side, should you fall, you would fall into pretending that everything is perfectly alright even though your baby is dead.  Either way you are lost.  Either way you are no longer you.  You are either a black shadow of your former self or a dollar store replica of yourself- plastic and cheap.  Either way you are lonely from fake relationships or no relationships at all.

It is difficult to find the balance as you walk.  Not just for yourself but for everyone else who is living their lives in the midst of your high wire act.  People are watching you as they go along their own lives.  Some of them make tremendous efforts to help.  They watch with baited breath and are scared that you may fall off.  So they try to help in whatever way they can.  You have the cheerleaders rooting for you, the engineers trying to steady the wire, the philosophers trying to keep you focused, and the clergy praying for you.  It helps.  All of it.  But ultimately you are still on a Grief high wire and you are still there alone.

Some of these people have what you lost when you started this Grief high wire act.  Although you are still on that wire, slowly placing one foot in front of the other.  You know that they are on their own kind of path, not a Grief high wire, but something else.  Most of the time you give them your best and most genuine smile, even though it is still painful up there, because it is real smile.  Sometimes you can't and you need to turn away from them to focus on the placement of your feet.  All of the time, even through the pain, you are their cheerleader, their engineer, their philosopher, their clergyman.  

You share in their joy the way they share in your grief.
They share in your grief and you feel steadied  enough by their compassion to share in their joy.

There are other people too.  The ones that maybe you knew of in passing (or maybe you knew really well, who knows) before you stepped off that platform.  The ones that you still see from time to time from your vantage point, also living their lives in the midst of your hire wire act.  They are the ones who look blankly at you as if they can't quite remember where it is or what it is you are doing all the way up there.  You look at them and realize that once upon a time they knew but now that you have been walking up there for so long they have forgotten or have chosen to forget.  Sometimes it makes you mad.  Usually it doesn't.  Mostly it just makes you grateful for all the cheerleaders, engineers, philosophers, and clergy you know.

Some of these people have what you lost when you started this Grief high wire act.  They want to show those things to you.  To the whole world.  More times than not, even though you are still walking up there all by yourself and you risk falling off the wire down to the dollar store plastic version of yourself, you want to do for them what they have been unable to do for you.  You want to bear witness.  But sometimes you just don't have the energy to keep your self perched precariously to that side of the wire.

Then, of course, there are the others.  The ones that when you look around you, you see them tottering around on their own Grief high wires.  From above, you talk with them.  You give them the best support you can and they give you the best support they can.

You trade secrets with them- If you crouch down when things get really bad it lowers your center of gravity and makes it easier to stay balanced.
You talk about experiences with them- I've been doing this for two years already.  Trust me, it will always suck but you do get better at keeping your balance.
You commiserate with them-  You ever get overwhelmed by the inescapability of all the pregnancy and baby-related content there is in the world and the silence we feel responsible to keep about how it affects us?


It is good.  All of it.  We need it to survive.  At least I do.

But sometimes I forget that all of us on our Grief high wires are not really and totally alone up here even when it feels like we are.  The other people in our lives are still there with us, most of them doing their best to understand -even though hopefully they never will because there is only one way to understand life on the Grief high wire- and they are still watching us intently.  Watching us intently because they want to be there in case we need a cheerleader, or an engineer, or a philosopher, or a clergyman.

I have forgotten what life was like before being up here.  Sometimes I also forget that there are others who aren't on this Grief high wire that are doing the best they can to still be present.

I talk shop.  I trade secrets.  I commiserate.  I forget.  I inadvertently touch on a sensitive subject.

I am so fortunate to have so many people in my life who fall squarely into the category of "people who try to help me while I walk this wire" and "people who are walking their own wires."  I don't have many people around me who fit in the "people who wan't nothing to do with my grief but want me to participate in their joy" category.

I want to acknowledge that.  I want to give it the attention it deserves and say,

Thanks for helping me to keep my footing.

no thanks christmas, i'd really rather not

For the last few years that Leif and I have lived together we have gone to get our Christmas Tree the first weekend of December.  We started out with a miniature tree to match our miniature apartment in Santa Monica but when we moved to this side of town we upgraded to a small tree that matched our small apartment.  The last three years since we've been here we have gotten the tree at a place a couple of miles from our house and have had to rig it to the top of Leif's old Honda Civic with twine and wishful thinking. No, that isn't quite right.  Last year we had just purchased our new Toyota, in early preparation for my expanding pregnant girth, and we tied the tree to the top of that car.

Neither Leif or I are Christian, as I am sure most of you reading either know already or have surmised from my writing.  I used to be, a long time ago.  Before Leif and I ever met, well over six years now.  As for Leif, he grew up as a Baha'i.  What is that you ask?  Yeah, I asked the same question when we first started dating.  Up until I met Leif my only knowledge of Baha'i was that members of the faith sponsored a section of highway clean-up near my childhood home.  Admittedly I still don't know all that much about it and what I do know about it has mostly been garnered from Wikipedia articles and discussions with Leif or his parents.  Although the rest of Leif's immediate family is Baha'i he hasn't been since he was in high school.  But unlike me, he still has some strong ideas about spirituality and the after life.

Despite the fact the neither one of us are Christian we do celebrate the holiday and getting the tree always signified the beginning of one of our favorite times of year.  Leif loves the egg nog and cold weather and I love the garlands and twinkling lights on the tree.  Last year as we decorated our tree we talked about how this year would be amazing and how much we were looking forward to meeting our future child.  We were so excited it was, looking back, ridiculous of us to assume that everything was going to go exactly as we had planned.  Fools.  Neither of us will ever be those people again.

This year I am not sure that we are even going to get a Christmas Tree.  I don't feel particularly festive right now.  My affection for this holiday has always had to do with celebrating family and friends and seeing as our family is incredibly incomplete I just feel totally apathetic about the whole thing.  Being the amazing and supportive husband that he is, Leif is following my lead on this issue.  So the decision has been left up to me and right now I am leaning towards trying to just power through this holiday with as little tears as possible.  Which will probably entail foregoing the Christmas Tree (I always feel badly about using a live tree anyway) and continuing to lick my wounds in the safety of my, decidedly Christmas Cheer-Free, home.

I think I will venture out into the Christmas season for only the most important activities.  Three events.  Two parties and Christmas morning.  Three days.  The other 28 days can just evaporate for all I care, Christmas Eve included.

In spite of all this I am in a much better place right now than I ever would have imagined that I would be six months ago.   Most days I am actually doing pretty good.  I'm just not ready to fully participate in everyone else's holiday joy.  That part of me that used to participate is too occupied with thoughts of what should be but aren't.

I'm on a wait list to order an ornament for George.  It is a ceramic rain cloud.  I don't think it will get here in time for Christmas anyway, even if we did get a tree.  I'm also participating in an ornament swap and will be getting something for George made by another mother who is missing her daughter this holiday.  I'm making one for her too.  It feels right, even though I am neither Christian or celebrating the holiday this year.

They all deserve to be remembered.

.silence is deafening.

Today my landlord referred to my son as "It" after I told her his name was George.

"Oh, it had a name already?"  She kind of scoffed.

I went on to explain to her that I was nearly 7 1/2 months pregnant when he died.  That he was born alive.  That had he not been as sick as he was he very well might have lived being born at that point.

"He was my son."  I said.

"He looked like a person?" She asked.

She went on to say things like "Maybe the spirit wasn't ready but the next one will be," "Maybe stress from school was part of the problem," "You have lots of time to make other babies," "You can't hold on to this,"  You have to stop thinking about it everyday..."

I've never spoken to her about George since he died.  Leif has, briefly, but I have not.  While we were trying to save his life she had a vague outline of what was going on but that was the extent of things really.  Until this afternoon she has never brought him up and neither have I.

I don't want to get in to too many specifics because ultimately they aren't really relevant but I will say that she was born and raised in a country other than this one.  I mention this because she is from a place known for the stoicism and bluntness of its people.  She is both stoic and blunt.  Very blunt, in fact.  So blunt that some of the things that she says can make a lumberjack blush.  We normally write her wildly inappropriate dialogue off as cultural differences, which, for the most part is what I believe to be true.

Over time I've discovered that if you can get passed the stoicism and bluntness, she has a good heart.  This afternoon I think in her own way she was trying to provide some comfort to me.  Knowing that, I wasn't angered by what she said but it did make me a little sad.

I already struggle with the idea that to only a relatively few people in this world was George an actual human being.  I think to many he is not a dead son but rather a lost pregnancy; an "it."  Some of this, I know, is all in my head.  But I am absolutely convinced that some of it is not.

I understand that people are afraid of saying something upsetting or sticking their foot in their mouths.  Or that people may think that it isn't their place to say anything at all.  Or that if they bring him up it will somehow make things worse for me.  Sometimes it takes people awhile to find the confidence to say something.  I was once that person who didn't know what to say when a friend had a miscarriage.  I get it but I am done accepting it.

Because here it is.

I appreciate her so much more for saying something.  Even though it was the "wrong" thing.  Even though a simple "I'm sorry for your loss" would have sufficed.  It was something.

And that is something.

You know what I mean?

.stretched and stark.

On days like this it comes so near as to snatch the breath from my lungs.  I reach out and feel the bitterness and anger and sorrow on the tips of my fingers.  Smooth, solid.  An obelisk of obsidian throwing long shadows on my life's landscape.


A seed of wide love coated a thousand times over in mourning.  My very own black pearl. 

My mind wanders to naked branches, limbs stretched and stark against a blue sky.  They herald the coming season but instead of choirs of angels I hear them speak to me in cautionary baritones.  The Winter creeps ever closer still and one morning I awake to find that it is almost upon us.  The nearly imperceptible change of the angle of light throughout the day; soft and simultaneously inexorable.  I feel the weight of it pressing on to my shoulders.

There is no shine or sparkle to these days ahead.

I once read a book* and it pulled loose a small thread in one of my seams.    

“Nothing is predetermined, it is determined, or was determined, or will be determined. No matter, it all happened at once, in less than an instant, and time was invented because we cannot comprehend in one glance the enormous and detailed canvas that we have been given – so we track it, in linear fashion piece by piece. Time however can be easily overcome; not by chasing the light, but by standing back far enough to see it all at once. The universe is still and complete. Everything that ever was is; everything that ever will be is – and so on, in all possible combinations. Though in perceiving it we imagine that it is in motion, and unfinished, it is quite finished and quite astonishingly beautiful. In the end, or rather, as things really are, any event, no matter how small, is intimately and sensibly tied to all others. All rivers run full to the sea; those who are apart are brought together; the lost ones are redeemed; the dead come back to life; the perfectly blue days that have begun and ended in golden dimness continue, immobile and accessible; and, when all is perceived in such a way as to obviate time, justice becomes apparent not as something that will be, but something that is.”

I've since unraveled as time has pulled me away farther from him.

Underneath something different.  Nearly imperceptibly so.  Softer and simultaneously inexorable.  

How I ache to believe that we will be brought together.  That he is more than just a single brush stroke on this canvas.  That he is, no matter how small, intimately and sensibly tied to all others.

My son, where are you?

I miss you.

I am incomplete.  

*Winter's Tale, Mark Helprin

.the devil's breath.

The dry wind is blowing hard here today.  They’re the Santa Ana winds, originally called Santana's Wind.  The Devil's Wind.  A meteorological phenomenon that sweeps through the Los Angeles basin throughout the fall and winter.  It has been inspiring songwriters and arsonists since, well, since forever probably.


Scientists surmise that the winds cause increases in atmospheric cations, which in turn leads to an increase in serotonin levels in the body.  Think Prozac blowing through at sustained speeds of 40 mph (65 kph) with occasional 70 mph (112 kph) gusts.  


Nature's way of saying, chill the fuck out.  Now go eat a sandwich and take a nap.


After George died numerous people approached me with the idea of getting on antidepressants (none of whom were medical professionals, by the way, just concerned citizens).  I politely declined. They thought it was because I was afraid to take them.  I wasn't afraid.  I was just waiting for the fall when the Santa Anas would kick back into high gear and all would be right again.  


Well, that, and I didn't think I needed them.  I still don’t think I need them but I wouldn’t hesitate if I thought that I did.


What I really need, and what I’m wondering if there is some sort of other meteorological phenomenon that can lend a proverbial hand to, is some relief from all this anger and guilt I’ve been carrying around for the last seven or eight months.   Something that will change my brain chemistry, if even for a little while.  That would be nice.


We have a photograph of Leif as a baby on the fridge.  All white blond hair and toothless smile.  I look at it and see George and I am mad.  Mad because I don’t really know that he would have looked like his dad.  It is just a guess.  Mad that I have to guess at such things.


The anger that I have is at the same time broad and directed.  Mad at everything and mad at nothing.  Mad at God and not mad at God, since I tend to not really throw my hat in God’s corner anyway. 


Mad at someone and mad at no one.


I’m looking for somewhere to aim my ire and coming up with only passable targets.  Not worth the effort usually.


Sometimes I'm mad at myself, which is where the guilt creeps in.  Did we do the right thing when we made the decision to not send him to the NICU? They said he would in all likelihood, if he even survived, be severely brain damaged.  We thought we were doing the compassionate thing.  Does that even matter?


I read women’s stories of their children on Faces of Loss and Faces of Hope and occasionally I see things written like the following in regards to making the decision to send a preemie to the NICU,

“I also had to ‘let her go’. How can anyone sleep with that on their conscious? Not me, that’s for sure.”

Ouch. 


We "let our son go."  Even though I know really that he was beyond help, it still stings.  Especially after reading something like that.


The guilt settles in.


I read about women’s stories of the success of extreme preemies surviving thanks to the NICU and I wonder if we had made a different decision if I would be holding a four-month old infant right now instead of sitting in front of this computer. 


The guilt stretches wide the confines of its prison.


Yes, I could do for a meteorological phenomenon of my own.  Maybe a light rainfall would suffice.  No, too cliche.  A hailstorm might be a better fit, metaphorically speaking.  At least a snow flurry.  But the chance of getting snow here is nothing to place bets on.

It is still outside now.  
The wind is all but gone.  

.tonight I light a candle.

Pregnancy and Infant Loss Remembrance Day

October 15

I say it so often.  

I wish there was more for all of them than this.

I wish there was more for their parents than this.

Tonight I will light a candle in remembrance.

Maybe you could light one too.

.next time.

I am a shadow. 

A silent, trembling figure in the corner.  

Full round bellies.  Pregnant with anticipation and with the promise of life.  

I am neither pregnant with anticipation nor with the promise of life.  

-Karen, you can head on back to the ultrasound room now-

Excited smiles. 

-Oh, I can't believe this is going to be the last one before he's born-

.

.

.

.

I don't belong here.  

.

.

.

.

The impulse to leave itches the soles of my feet.

I want to bury myself in a pile of leaves; gold and red and orange and brown.

The smell of wet earth in my nose and the crunch of fall in my ears.  

Instead,

Tears in the bathroom.

Paper gowns and an exam table.

A discussion about 

next time...

and not high risk but treated as such  

and no reason to think it will happen again

but close monitoring

with Perinatologist  

with Cardiologist 

and echocardiograms

Then I'm away, dragging the weight of my morning behind me.  

Next time.  Next time.  Next time. 

I don't even want to think about a next time. 

I want a do-over.  

I want a time machine.

.pilgrimage.

His grandparents are making the pilgrimage home, after many years abroad.  Their last stop before their ultimate destination will be the shrine of the never aging boy.    

They will find no live grandchild here.  For that they will have to keep moving.

Would you like to see him?  These are all we have.  No one else has seen them before.  Three photographs.  Only one with a flash.  Too dead, that one.  Don't spend too much time looking at that one.

Would you like to hold him?  The copper box fits nicely in the palms of your hands.  Don't worry about oily fingerprints, they are easy to clean off.

His grandparents talk about him freely.  A gift to us.  The best gift.  He is real to them without ever having laid eyes upon him.  I wonder if that will change once they see just how unreal a dead baby looks in photographs.

I wish they had seen him and held him when he was still in possession of all three dimensions.  I think they would have kissed him and rocked him and been good to him in the midst of their grief.   How sad for them to have missed his life and death completely.

For them there is only a copper box, three photographs, and an ink print of a foot.  

For them there is only their very sad son and his very sad wife.

Inadequate.

.pages, two ways.

As it happens frequently in this part of the world, the summer heat never received the memo that it is passed its expiration date and that it is time for autumn to come out and play.  So the summer heat is giving a great last showing with 100 degree weather as we are nearing the start of October.  

Because of the oppressive heat, last night night Leif and I were sprawled out on the couch watching the first episode of Boardwalk Empire in our underwear.  We were motionless, melting into our couch, afraid to touch one another.  On the television screen men in their woolen suits walked around Atlantic City during January of 1920 -the start of prohibition- and women strolled in heavy dresses while wearing deep hued lipstick.  We tried to think cool thoughts.

One scene was of a sidewalk show of babies in incubators.  White and yellow lettering in the style of art nouveau -or was it art deco- bade the passerby to come and see the babies who weighed less than three pounds.  Tiny babies in metal incubators on the Atlantic City Boardwalk.  Close ups of small infants, wrapped in swaddling, being weighed on ancient contraptions.  Leif grabbed my hand.  Our skin melted together.  I turned to him to say, "I've never seen faker looking babies" only to see his eyes shiny and watering.  I saw an attempt to pull at the heart strings of the viewer and Leif saw our son.  

"You will grieve differently,"  our counselor told us in our first session so many months ago.  "You must understand this and not be judgmental of one another.  Judging each other's grief is often the start of the decline of a relationship."

It is hard to tell when we are on the same page with our grief.  I think it happens more rarely than normally I allow myself to believe.  Most days Leif is the one comforting me.  Holding me close while I sob and repeat the four words that have become my mantra over the last six months.  I Want Him Back.  I Want Him Back.  I Want Him Back.  He feels the loss of George as deeply as I do but the way he processes it is not in the same sobbing-writing-about-it-on-my-blog way as I process it.  

Last night I was unmoved by what I saw on the screen.  Leif was not.  

Different pages.  

And that is fine.

-----------------------------------------------------------------------------------

It was recently -as in this morning- brought to my attention that after the kidnapping and murder or her son in 1932, Anne Morrow Lindbergh wrote a series of works on grief.  

She writes in Hour of Gold, Hour of Lead, 

"One must grieve, and one must go through periods of numbness that are harder to bear than grief...., On the other hand, there is the temptation to self-pity or glorification of grief.  'I will instruct my sorrows to be proud,' Constance cries in a magnificent speech in Shakespeare's King John.  Despite her words, there is not aristocracy of grief. Grief is a great leveler.  There is no highroad out." 

and later,

"Courage is a first step, but simply to bear the blow bravely is not enough. Stoicism is courageous, but it is only a halfway house on the long road. It is a shield, permissible for a short time only. In the end, one has to discard shields and remain open and vulnerable. Otherwise, scar tissue will seal off the wound and no growth will follow. To grow, to be reborn, one must remain vulnerable-- open to love but also hideously open to the possibility of more suffering."

A wise woman wrote to me in an email once how since the death of her child she has imagined that she has joined a long procession of weeping women (and men) who stretch all the way through history and across space.  A sadly beautiful image.  An image that I feel closely attached to.  An image that now includes Anne Morrow Lindbergh in procession as well.  

This morning, for seventy cents plus shipping and handling, I bought a used paperback copy of Hour of Gold, Hour of Lead.  In the description of the book it says that while the condition is good it has dog-eared pages and some highlighting.  I wonder what it is that its previous owner thought important enough to highlight.  I wonder if he or she was just an admirer of a skillful and poetic author of if he or she is, when I see what was highlighted on those pages, someone whom I will recognize as a member of the procession as well.