Woman in the Bubble

I've had a very long holiday weekend to think about knowing.

Earlier this past week, I had my perinatologist appointment. If you don't know what a perinatologist is, they're sort of specialized obstetricians... uber-OB's, if you will. These are they guys (and gals) who handle the highest risk pregnancies and the women who have the hardest time conceiving. The OB who delivered William decided it would make more sense (and insurance would pay for it) if I requested the blood tests I wanted done through a perinatologist. 

Of course, I couldn't get in to see him for almost two months... these uber-OBs are very much in demand, and they get paid quite well for their services. It was $500 just to walk into his office. My OB estimated the blood work (I haven't seen the bill yet) somewhere around $2000.

So after all that waiting, I finally got to see him on Monday June 29. He ordered all the blood work to test for all those things known to cause stillbirth - things like thrombosis, lupus, thyroid, homocystine, etc. Then he said that the results would be back by Thursday, and he would give me a call. 

So Thursday came, but no call. Finally, I couldn't stand it anymore, and I called their office around noon. The nurse said the results were in - but the doc hadn't signed off on them yet, and he would call me when he had. Of course, he didn't call. And they stopped answering their phone and let it go to message starting at about 3pm. My guess is they all left early for the holiday weekend.

Which meant I had to wait again. Which I've been doing, patiently, or not so patiently, depending on my mood, since Thursday. And look at that, Monday is tomorrow. Just around the corner. A phone call with the blood test results is, in fact, now just hours away. The results are sitting there - they've been sitting there for days. Someone knows. I might not know, but someone knows. 

They say knowledge is power, and I'm sure, in some ways, that's true. But I've been sitting here wondering, since I've had time to wonder... which is worse - knowing or not knowing? 

I thought I knew. I thought not knowing was worse. Much worse. I thought that knowing would give me information, and perhaps, the power to change things next time, to prevent what happened to William. At the very least, even if all the tests came back negative, it would give me peace of mind, knowing I'd done everything I could to find out what happened.

But now... on the eve of knowing... I'm not so sure I want to know. 

There are things you just can't unknow. Maybe that's it. That sense that ignorance really is bliss. I look around at the women who have never lost a baby, and I know something they don't. And I can't unknow it. I can never be back in that place of unknowing again. I know - and I wish I didn't. 

Right now I don't know... and that ignorance feels very safe. 

Tomorrow I get information which will, one way or another, pop that safety bubble. 

But tonight, I want to stay here. Not knowing. The woman in the bubble. That's who I want to be right now.

Heart Matters

I don't want to be the mother of a dead baby.

I guess this is the phase of grief they call denial. 

I realized today that, for the past week or so, I've been pretending like it happened to someone else. I don't want to read about baby loss. I've been ignoring my blog list (and my blog). I have a stack of books beside my bed that I would have already sped through in the early days, but they sit there mostly untouched.

I don't want to be this person. I want to feel something else besides pain and loss and grief.

Yesterday marked the three month anniversary of William's death and I let it pass without a word or even a tear.

Today, I felt guilty for doing it. Not only am I a horrible mother for not being able to protect and keep my baby alive, I'm a horrible mother for not remembering and honoring him how I should be. Ah mommy-guilt. There's nothing else like it.

I think part of this feeling is being brought up because we're trying again. Yes, we're actively pursuing pregnancy, doing everything we need to in order to make another baby, and the possibility brings all sorts of bittersweet feelings with it.

I want William, and I know this baby, if we are successful in conceiving and I am successful in giving birth to it alive - god knows there are no guarantees -  won't be William. I worry if it's a boy - will I compare them? I worry if it's a girl - will M. be disappointed? Will I?

Yesterday, I had a stress echo of my heart done. I've been having heart palpitations and some chest pain - I'm pretty sure they're anxiety related, but the doc wants to be sure. So there I was, facing an ultrasound machine again for the first time since that night in the very same hospital when the tech told us William was gone.

 How many beats in a lifetime? I wondered, seeing my heart beating outside of my body. How many beats did William's heart get before it stopped?

I watched my own heart beating on a fuzzy gray screen and it was both surreal and apropos - because that's what it's felt like, for weeks, like I've taken out my heart and put it somewhere outside of myself. So I don't have to feel. So I don't have to do this anymore. Maybe my heart died when my son did.  Maybe I just wish it had.

He is. He was.

I've lost something.

And there is nothing else like it.

I can't find it in my closets, under my bed or in my basement.
I can't find it in sleep, although I try.
I can't find it in the magnetic pull of the Internetz, perusing baby-loss blogs.
I can't find it in my living children, making them lunches, taking them to activities.
I can't find it in my husband's arms at night.
I can't find it watching the transformation of my "reborn" William doll.
I can't find it reading book after book after book about baby loss.
I can't find it in charting my temps and hoping for a fat, healthy egg.
I can't find it in chocolate or Cheetos. 
I can't find it in turning the music up and singing too loud.
I can't find it turning away from pregnant mothers pushing baby strollers.
I can't find it dreaming, strange and surreal images that leave me bereft and full of despair.
I can't find it writing, navel-gazing, here at the poor me pity party.
I can't find it talking to other baby-loss mamas.
I can't find it even in the deepest part of my imagination.

Although I remember. I remember holding him, kissing the impossibly soft skin of his cheek, cradling the downy weight of his head in my hand, asking him, "What happened, baby? What happened?" as if he might be able to open his eyes and tell me. This is some surreal dream I'm going to wake up from soon, I'm sure of it. I'm sleepwalking through my life looking for the baby, like I always did in dreams, under chairs and in cupboards, silly places where babies wouldn't be. Because babies don't get lost. Babies don't go anywhere without their mamas. And babies most definitely do not die. Of course they don't. Don't be silly. Babies don't die. Babies don't die. 

I don't know what I lost. I never knew. 

I lost my future.

That's what I'm looking for. Trapped in some surreal time warp or loop, endlessly looking for something that never was, and yet I held him, he is my memory, he is my best best thing. He is. He was. He is. He was.

I need more Kleenex.

Dear Dad...

Dear Dad,

I'm not glad you're gone... but I am glad you weren't here in this place to experience the loss of the grandchild we named after you.

And part of me hopes that my sisters are right, that there is some "other place" ... some version of heaven... where maybe you did get to see him first, and you are holding him now.

But I still wish I was holding him here... that we both were.

I wish I had something to hold onto, still. Losing both of you in the space of six weeks should have been enough to kill me. Sometimes I wish it had.

Remembering you both on Father's Day...

Father's Day - Remembering

Remembering our son

William George

April 1, 2009

On Father's Day

William Dreaming


life led me off the edge
of everything, daddy,
i wasn’t scared because
i knew you loved me,
i heard your voice,

booming rumble in
mommy’s tummy,
i felt your hand press
my back, my head and
you rocked me to sleep
nights and
i knew you loved me.

i don’t know why
i couldn’t stay
when my narrow world
narrowed again and then
grew infinite wings,
i felt you
and then

i became you, but
i always was
a part, a whole
contained and complete.
sing me to sleep, daddy.
i am dreaming
the dream
onward.

The Doctors

I wrote to The Doctors today.

It occurred to me, as I was watching the show and listening to them say how important it was for them to inform the public of health risks... who better to take up our cause?

So I wrote them a letter, and I'd like to encourage every baby-loss mama who reads this to write them as well. Tell them your story. We all know how much we hate getting new "members" to this little club of ours. Let them know there are women out here who are suffering, and maybe, just maybe we can get The Doctors to talk about stillbirth/antenatal death awareness and prevention and help us keep our numbers down. That would be a blessing, wouldn't it?

You can write them here.

This is the letter I wrote:

I'm the mother of four healthy living children, but on April 1, 2009, when I was 39 weeks pregnant, the baby I was carrying died.

And then he was born.

Our little stillborn boy, William George, was perfect. There was nothing genetically wrong with him. There was nothing abnormal found with the placenta or his cord and no infections were apparent. His heart simply stopped beating and he never took a breath.

I can't tell you horrible it is to carry a baby for nine months to only lose him so close to the end. But tragically, and maybe surprisingly, statistics say that a majority of stillbirth babies are, in fact, full term.

As a mother, of course I'm grieving... the pain of losing a child is beyond description. But as a doula involved in the birth community for the past twenty years, I am ashamed and appalled at how long the stillbirth facts flew under my own radar.

Why didn't I know that stillbirths claim 70 babies per day in the United States?

Why didn't I know that the risk of stillbirth is TEN TIMES that of the risk of a SIDS death?

Why didn't I know the risks? Race, obesity, advanced maternal age, a previous small for gestational age baby, etc...?

Why didn't I know that 1 in 115 deliveries in the U.S. results in a stillbirth - compared to Downs Syndrome, which accounts for 1 in 750 births?

Why didn't I know that almost half (40%) of stillbirths go unexplained, and most doctors don't recommend autopsies on babies to help decrease that statistic?

Why didn't I know that, according to a recent study, almost HALF of the women who later experienced a stillbirth noted decreased fetal movement?

Why didn't anyone tell me that EVERY woman should do kick counts starting at 28 weeks and keep track of the baby's activity at the same time every day to help reduce the stillbirth risk?

Some stillbirths are unpreventable, which is a terrible reality - but even if kick counts could save just 10% of all stillbirths in the U.S., that's still more babies lives saved than ALL of the babies that die each year of SIDS!

The medical community, it seems to me, is willing to "accept" a 1 in 115 ratio of stillbirth deaths. Why? Who would get on an airplane knowing they had a 1 in 115 chance of not arriving at their destination? And more importantly - why is nothing being done to make it safer?

Everyone knows about SIDS - the "back to sleep" campaign has been so successful, babies are wearing helmets now because the backs of their heads get flat from sleeping on their back so much.

But why does no one know about stillbirth and the risks? Why aren't kick counts being taught and encouraged?

Why don't more mothers know?!

There needs to be a movement in this country to increase awareness and prevention of stillbirth, or S.A.D.S: Sudden Antenatal Death Syndrome - and I think The Doctors can help put the spotlight on this.

I hope you take this up as a topic and do a show on it. It could really help reach women out there who are at risk, and perhaps save babies. No one told me, and my son is dead. And I'm a doula, I deal with birth and the research about it - I should have known. And if *I* didn't know - what are the odds the average first time mother is aware?

There's nothing I can do to bring my sweet, precious baby back. I can only try to reach out and increase awareness and hope that someone else won't ever have to experience the pain of birthing their baby still.

My grief/loss blog:
http://inannajourney.blogspot.com/

If you need more information:

International Stillbirth Alliance:
http://www.stillbirthalliance.org/modules.php?name=Content&pa=showpage&pid=14

Stillbirth in the News:
http://www.stillnomore.org/news.htm

Stillbirth Collaborative Research Network:
https://scrn.rti.org/

National Stillbirth Society:
http://www.stillnomore.org/

The MISS Foundation:
http://www.missfoundation.org/

Now I Lay Me Down to Sleep
www.nowilaymedowntosleep.org/medical

First Candle Research:
http://www.firstcandle.org/research/res_rs.html

The Present

I'm bleeding.

It's been eleven weeks since William died, and my period has finally returned. I've been anxiously anticipating this event, almost since the moment we lost his heartbeat. Part of me kept whispering, hurry hurry hurry. The empty-arms part. The full and leaking breasts part. The raging hormonal mama-bear part. That part of me wanted a baby and wanted it now.

Of course, what I really wanted was William. William alive, in my arms, at my breast, the perfect antidote to the crazy-making hormonal soup pumping through my veins. I couldn't have that. Logically, I knew it. So the next logical step would be another baby. As fast as possible, thankyouverymuch.

And another part of me wanted to give a big, fat middle finger to the universe. Take my baby, will you? Fine! Like Bill Cosby - "I'll make another one just like you."

I know. I can hear the universe laughing, too.

Fat chance, lady. Not only can't I make another one just like the one I lost - even if the complex mystery of DNA didn't make it impossible, biology aside, the fact that we're all individual from that first spark is just undeniable. Not only that, but the universe decided I needed to wait eleven weeks to contemplate my fertility and the potential possibility of together creating another being that, while not William, might be like William, at the very least, in that he or she would be of both me and M.

Eleven weeks. Wondering. Waiting. Impatiently. Asking questions of myself: Why can't this part be over? Why won't it come? Am I pregant already maybe? Have I even ovulated? Are these stupid tests even accurate? Why don't I know what's going on in my own body? Why would I think I would know - my body killed my baby, and I didn't know that, did I? Why does it take so long? Why can't we skip this part and go straight to the end? Is there something wrong with me? Do I have some sort of cyst or fibroid? Do I have a disease? Maybe I have uterine cancer and that's what killed the baby?

Insane thoughts. They wouldn't stop, even when I tried to stop them. And everyone around me saying kind words - be gentle with yourself. Your body needs time to heal. Your psyche needs time, too. But my ego is not only strong-willed, it's vicious. It wants what it wants. And it doesn't care who it has to hurt - my/itself included. Gentle? What has been gentle about any of this? My baby fought for his life inside of me until he grew too tired to fight anymore and gave up, and I was oblivious. I'm supposed to forgive myself, be kind, gentle, go easy? Feh. Not likely.

I grew angrier at my body by the day. I spent time looking at my "Ovusoft" program, analyzing cycles past. And skipping over that long stretch of time between July 2008 and April 1, 2009. It showed in the software as "cycle 65." Like every moon cycle before, or any that would come after, William was now just another bit of my fertility history, a revolution on the wheel. Is that what he would forever be reduced to?

Finally, desperate for any hint or clue to my current stuckness, I clicked on that cycle. It froze the entire program. The screen went black and then flashed a bright yellow error message. "Cannot complete that function." Yeah, tell me about it. Apparently, I couldn't either. That cycle will forever be aborted, inaccessible, a symbolic representation of the dusty reality - whatever bits are left of my son in his urn.

The next day, I started bleeding, finally - with a vengeance. The thing is, I hardly bled at all after William was born - it was like the lightest of periods. I was actually offended by how little I bled after his birth, how quickly my body was rid of him and getting back to normal. At the same time, I wondered if it was my own longing for another chance at this pregnancy thing that made it so.

And then it took eleven weeks for anything to happen. But when it did, the floodgates opened and I was baptized in my own blood. It pooled between my thighs. It ran in rivulets down my legs. I left fat droplets on the bathroom floor on every trip. I cleaned it from my sheets, my pants, the seat of the car. I was afraid to get out of the shower, the only place it felt safe to be open, to let it flow and wash away the bright red residue of my pain.

This was, finally, the outward display of my inner state of being, something I'd been looking for all along and didn't even know it.

I'm now bleeding for my son both inside and out. And now that it's here, that I have started another cycle, number 66 according to the software, I'm not even thinking about starting over, making a new baby. This blood has brought me here, to this moment and the present weight of my grief instead of looking to some possible hopeful future.

The present is pain. The present is death. The present is blood. I am here, I am in it, I am it, and there is no other way out but through.

My body is very, very wise.