afraid of the dark

photo by Jenny Kristina Nilsson.

I feel small. Alone.
 
It is suddenly upon me. Takes hold of me. I am a small molting creature. I want to crawl under something. Or play dead. Or turn the exact shade of my bed covers. I kick my legs and turn over. Then turn over again. It is always night when I feel this weight on me, or rather all the skin off of me. Always night when I become terrified of mortality. Mine. Yours. My parent's. My children's. And then the fear turns to some kind of vortex in the time-space continuum. Time folds in on itself, across my year and into old age. I no longer feel, in those moments, as though I am thirty-six, but I gag on that withered end-of-life taste. I can smell the sweet orange cleaner that covers old age. And see myself wanting to believe in something. Life seems so fucking fast now. My kids and their kids are going to be old before I can even process how amazing their youth is.
 
I existed in a miniature terrarium before Lucy died. It was a self-constructed sterile world with plastic signs that read, "This is your home. Nothing can hurt you here."

I can see beyond the glass now. It was rather silly to begin with, surrounding myself with moss and other tiny soft things. I didn't realize I was doing it, after all. I just sought comfort, like any animal.  I thought I was a Buddhist. I thought I was an existentialist. I thought I was an existentialist Buddhist. Death. Life. Mortality. Morality. There was some bullshit zen place I felt I had gotten with death. Death happens. To everyone. I thought I made peace with that. Until someone so loved and daughterly died inside of me. Then I realized I was only prepared for other people's deaths, not my own or my own child's death.

:::

After Lucy died, tectonic plates shifted in me. Whole continents of me are no longer flat. My body navigates the outside world and then my new and ever-changing internal landscape. First, twisting and moving around other people's fears of death and child loss, and then, of course, charting a course through my own. I have become terrified of gravity. Plagues rest right over the horizon, ready to capture my children. Even Daddy-wrestling seems wrought with portent and disaster. The most pedestrian of activities have become the potential for the most dramatic of endings.

A small green plaque now reads at the base of me:

The Caution Mountains.
Elevation: Not High Enough to Hurt Yourself.

The truth is I cannot protect anyone from death. We are all going to die. We don't know when and we don't know where. And it makes all of this impossibly oppressive. We all know this, but did I really know it? Did I really understand that? Not until Lucy died and I held her small, lifeless body and wished it warm again.

If I needed to pick one word to describe grief for me, it would be fear.

Fear of death. Fear of disaster. Fear of the unknown. Fear of others. Fear of myself. Fear of the market. Middle of the night fear. Shaking fear.  Fear that feels like the dysentery. Fear that feels like indifference and apathy. Fear that feels foolish. Fear that does not resemble a labyrinth, but rather the exact opposite--a maze with no outs.

No matter how much bubble wrap I had, I could not have kept you safe, daughter.

This fear isn't debilitating. In fact, it is so functional and so understandable, I allow it to exist without medication. "You are afraid," I say, "because your daughter died. You are afraid because you don't want anyone else to die. You are afraid because you don't want to die. You are afraid because you have seen person ash and it is not clean and smooth and easy, it is lumpy and different colors and includes someone you loved more than the sun. And the others are afraid too. It is normal to be afraid."

So much of who I was died the day Lucy died. Not just the happy one, the non-grieving Angie, but the secure one, the peaceful one, the one who wasn't afraid of shadows and boogey-men. The existentialist Buddhist one.

In the past eighteen months I have talked about these two people with my name--the Old Me and the New Me. By the sounds of it, the Old Me is a pretty terrific person. The Old Me was pretty. Kind. Light on her feet. An athlete even. She was a positive person.  A non-grudge holder. She meditated and practiced ahimsa. The Old Me remembered your birthday. The Old Me was striving for selflessness and enlightenment. She sat with discomfort for wisdom. The Old Me was funny without being bitter and sad. The Old Me talked about your stuff with you. She was a good listener. The Old Me also wore crazy earrings. You would have liked her.

The New Me is bitter. Angst-y. The New Me is a sad person. Defeated. The New Me is afraid. She is anxious, biting her nails and pacing. Up late at night thinking about things she cannot change. The New Me doubts. Often. Constantly, even. She doubts her abilities as a parent. She doubts her diligence in everything. She doubts her beliefs and unbeliefs. She doubts truths. She doubts justice. She doubts knowledge. She doubts herself.

The Old Me/New Me dichotomy is cruel, because I was never that great, nor am I that horrible. It is also a lie. This is just all me. Me. This is just me grieving. This is me soul happy, but body sad. This is me afraid. This is me parenting two live children and a dead one. The truth of it is most of the world saw the commercial of me. The me with make-up on, drinking a bourbon on the rocks, laughing at irreverence, riffing on a story with an old friend. I was selling an idea of me. That was me socializing. A very different me. This is the rather unchangeable borderline agoraphobic me trying to figure out how to live this life without my child.

What one word would you pick to describe your grief? How has anxiety manifested itself in you after the death of your child or children? How do you deal with your middle of the night anxieties? Do you believe that there is an old and new you? What is the new you like?

Warrior Position

Angie, a writer, poet, and painter, joins us today at Glow in the Woods as a regular contributor. With the stillbirth of her second daughter Lucia, Angie began writing at Still Life with Circles. She shares a piece of art, music or writing from a bereaved parent or family member every day at the year-long creative project still life 365. Angie resides near Philadelphia.

Angie is kind, thinky, and an occasional firecracker. And so here, among us, she just makes sense. Please join us in welcoming her as yet another glowy cabin host.

~ Kate

I don't want her to notice me, but I keep staring at her. I will myself to simply ignore her, but then I look back to make sure she is not looking. My attempt to avoid her gaze wrenches her towards me.

"I know you. Where do I know you from?" My eyes fall on the eighteen month old girl staring at me from her shopping cart.
"Prenatal yoga."
"That's right! How are you?" And her eyes fall on the car seat propped in the front of my basket.
"How old is he?"
"Twelve weeks."

She bends down to see in the front of the car. Math is happening. Confusion is settling in. She stares at me, unsure what to say. I have a three year old and a three month old. Nothing is calculating. Awkwardness has just split again and again like some kind of quickly reproducing virus, filling the air around us, suddenly and oppressively.
 
"My daughter, from that class, died. She was stillborn at 38 weeks."
We drink in the conversation suddenly diseased by death.
"Oh my God. I have chills."
"Well, to be honest, I have chills too. I haven't talked to anyone from that class, or the instructors, and some of the most loving memories of my daughter is prenatal yoga. I have been afraid to see people, or even go back to a yoga studio."

I said it. Out loud. I am afraid of you. I am afraid of yoga.

:::

With Lucy in me, I felt more beautiful than I ever have in my life. I wore long flowing dresses and walked in the grass barefooted. I reveled in being rounded and beautiful. I was able to grow beautiful baby girls, and it made me feel like magic. I took yoga to connect with Lucy, my second daughter, after chasing my one year old all day. Prenatal yoga was the time of the week that was solely ours. As I practiced, I would think how incredibly happy I was on a deep fundamental level. Every cell of my body was contented. I wanted this exact life at this exact moment.

photo by virginia zuluaga

The  prenatal yoga instructor made each of us promise to email or call within 72 hours of our births. So she could tell the others. So she could know about our beautiful babies. She said the same thing every class for the new people and to remind all of us. She. Was. Serious.

I did, you know, tell her in the 72 hour window after Lucy died. I sent an email to every person in my address book with our impossibly sad news. It was the worst thing I could imagine at the time--having to tell someone in the supermarket that my daughter died.

We received many condolences. The ones that were most surprising to me were the ones that weren’t there. There was nothing from the prenatal yoga instructor. I wish I could say that I didn't keep score of such things. But I did. I remember every "I'm sorry," no matter how awkward. Every. Single. One. Weeks passed and I sent her another email about continuing yoga. And then a few more weeks, I sent another. Written delicately between the lines in invisible sanskrit, I wrote, "Please help me, Yogini. Certainly, you of all people have sat with a grieving mother. Certainly, you of all people can help me trust this body again. Certainly, you  of all people can shed a beautiful light on this darkest of occurrences. Certainly, you of all people have wisdom about death."

Two months and another email later, I received an email from the yoga instructor with many excuses about why she didn’t say she was sorry earlier. “I wanted to give you space to grieve,” she said. Because emails with a simple “I’m sorry” are always so disruptive, I snarked in my head. She gave me ten free sessions and wished me well.

To be frank, I forgot she ran a business. I considered her part of my holistic maternity care. We talked long after class about birthing. I thought she loved and cared for each little baby growing in each lumbering body that came to her studio. I thought she was a healer, some kind of secular shaman and a person comfortable with life as well as death. How do you soothe people, help them find a center, when you ignore a huge part of this human experience—death, grief, mourning and chaos? Can you sit with life if you cannot sit with death?

:::

To the beautiful pregnant hippy mother I once was with Lucy in my belly, I am now the ugly punk rock girl with pins through her face and a mess of fried green hair. I feel scabby and damaged. I reject yoga. The mind/body connection feels like bullshit to me now.
 
It is acute in this market, talking to this mother. The refrain in my head is, "The fucking yoga instructor said nothing."  But this yoga mother is different. She speaks with sincere compassion about my daughter. If she had only known, she said. She wears her health and happiness, her spirit and her graciousness, like war paint. I wear my grief and sadness like a Kevlar vest. I protect myself against who I once was, maybe who I want to be. But she made it easy for me to talk to her simply by dint of her not making excuses to get away. She listened. There is no magic formula to being a good support in my grief. Listen. Be brave. I want you to work out. I am rooting for you.

Sometimes I think my subconscious is a neodymium magnet. I didn't want to talk to her. I felt nauseous and unnerved when I saw her. But maybe I did want to talk to her. Maybe I want to invoke Lucy's name. Maybe I wanted one of the yoga women to know my baby died, while theirs lived. Or maybe it is this little girl staring at me. I don't usually imagine what Lucy would be doing, or where she would be in her life. I am not that imaginative. But maybe I just wanted this specific experience--Little Girl: Aged Same As Dead Daughter.

I thanked her for standing and talking to me a bit. Maybe, I muse, talking to you might help break that fear I have of going back in a studio and practicing yoga again. But deep down, I know it won't. I don't measure my growth in long speeches, but perhaps a sigh here or there. One day, perhaps, my warrior position will be different. Perhaps it will hold both life and death.

:::

I believe in the mind-body connection sometimes. Other times, I think it paints the world with a broad magical brush, especially when it comes to pregnancy. 'Just buy into the organic / yoga / no lunch meat / no alcohol / left-side sleeping / meditating / positive thinking thing and your baby will be fine.' And I think that is bullshit, even if I think all those things are good to practice in pregnancy. And I think it's okay to call bullshit.

What about you? What large part of who you once were have you rejected after your child's death? What schools of thought, or spiritual and mind/body practices have you retained since the loss of your baby? What have you discarded, and why? What have you found that's given you some comfort?

Dear Friend,

I'm so sorry you thought of us when your friend's newborn died this week.  I'm sorry for your friends and their lost child most of all, but I'm sad for you, and for us, too, that we are now experts at this.  But fear not, you contacted the right people.  We can help you help them.

First of all, start cooking.  Do laundry, clean the house, take charge.  Keep it up for at least a month, with the help of other friends.  Right away, order her to bed and give him a beer or nine.  Yeah yeah yeah alcohol is dangerous and addictive and all that, but I swear to whatever god is out there, delicious malted barley and fermented hops probably saved my life in those first days.  Way better than the anti-depressants or valium they'll probably want.  But let them have them, too, for a little while.  Obviously, not together.  But a little bit of numb is fine.  They are in shock-panic-disaster-mode.  All their alarms are going off and nothing makes any sense at all right now.  Let them grieve, but help them be calm, too, if you can.

And frankly, yeah they are probably a little suicidal and a little crazy and definitely extremely lost.  Their souls have just been shredded by the Universe itself.  They are fucked up and they need help.  That is why you have to hold them tight and keep them close.  Do it in shifts.  Be with them, but don't overwhelm them with people.  If anyone manages to make either of them laugh no matter how dark and awful the humor, that is an extremely good sign.  Don't bring in clowns, but aim for a little bit of black humor if they are the type that needs that.  I did and my brothers did me right.  Those moments of dark levity were less-awful-spots in a terrible, incomprehensible time.

Don't make them have to make decisions.  In the first days after Silas's death I could only think a few minutes into the future and not all that successfully.  "Should I get up?  Should I eat?  Should I bother even thinking about any of that?"  I felt alien and awful in the outside world.  I'll never forget my first errand out to the bank and a Walgreens after he died.  I returned worn out from a ten minute ride up the street.  I was crazed with grief and overwhelmed by the fact that the world just kept on going even though mine had come to a complete stop.

Do anything you can to make them have less to think about.  Right now they are trying to figure out what the fuck they are supposed to do with their dead child, with their demolished hopes, with their annihilated lives.  Don't make them have to think about chores, too.

And yeah, she's worse off than him right now in a more immediate, physical way.  But then the other way around, that also makes it worse for him, too.  His disconnection from the physical bond mother and child shared is also a loss for him.  Mentally, emotionally, chemically, he was preparing to meet and bond with that child, just like the mother, but now he has even less than what she had, in a way.  Really all I'm saying is he's working hard to stay strong and upright for her, but don't mistake courage for strength.  I always felt like I was on the verge of a bottomless, endless void.  Stand there and face it with him if you can, and don't let that void consume either of them.

A death like this can be a poison to their souls.  It will take a great deal of patience and time for either of them to even begin to fake normalcy.  Shower them with love.  Talk about their child, use her name.  Look them in the face and the eyes when you discuss the absurd awfulness of their plight.  Tell them how much you miss her.  Do not be afraid to be direct and honest and clear with them.  The death of their child is like a blazing nova of utter blackness and its awful light reveals everything about their lives, their hopes, and about their friends and their families.  Do not be afraid to stand directly next to them and face directly into that palpable pain if you want to keep them alive and keep them protected and keep them as friends.  Those that cannot handle what they are going through won't stay around long, and they will know very quickly who they can count on.  Be someone they can always count on, because right now they can't count on anything at all.  The Universe itself has turned on them.

Never say that everything happens for a reason.  Never try to mollify them with talk of angels and meant-to-be's.  Never say that God works in mysterious ways.  Never compare a trivial loss in your own life with what they are going through.  Don't talk about babies.  Don't talk about hope and somedays and futures.  Help them deal with the immediate dilemmas of everyday life (ie what show to watch, what time to eat, that it is okay to not shower) and don't even consider trying to tell them anything about the true nature of reality and what good might someday come.  Any of that is just dressing up a shit sandwich with rotten tomatoes and wilted lettuce.

I'm sorry.  I love you.  I miss your child.  I'm here for you.  Let me do that for you.  Those are the only things you need to say right now and each and every one should be followed with a tight and true hug.  Cry with them.  Be silent with them.  Talk with them if they can find any words at all.

Lastly, don't forget to take care of yourself, as well.  Work with your friends to always keep someone close, but make sure to sustain your own life so that you are strong and ready when you are with them.  They will be strange and sad and difficult, but if you love them and are patient you just may keep a flicker of light alive in their souls.  But don't worry about sanity right now, that's a lost cause anyway.  Just leave breadcrumbs on the trail back and help them be a little bit okay for a little bit of one day, each day, every day, hour by hour, minute by minute.

They are on a whole new timescale now.  They are now counting the moments since they lost their child, and nothing will ever be even remotely the same again.  They need company in this new landscape, though, and that means you need to help them find their way step by step.  But don't call them baby-steps, they just might punch you in the face for that one.

~~~~~~~~~~~~~~~~~~

What else everyone?  What advice can you give to the friends and family of someone that has just lost a child?  And what do you disagree with from what I said?  This path is completely different in so many ways for each and every person so I'm sure my advice is anything but exactly right for everyone.  What did I miss or get wrong?

gratitude

It’s gut wrenching how much I long for her these days.

A whirl of small brown leaves flies against the windshield of my car as I drive by their tree, almost bare.

Hello, Beautiful…

I feel her close, I really do.

And also, deep in my gut, everywhere in my heart, in all of me – the awareness that my child in her body is missing.

For about a month, we’ve had her picture close by in the dining room of our new home. It’s in a temporary frame… I’m working on something much more grand, much more beautiful. But her sweetest face is there in all its 8x10 glory, peeking out at us as we eat, draw, do homework, putz around on the computer, talk. As I write this.

There she is… and yet that’s not her. It’s just her photograph. Sometimes I feel her there. Sometimes she is in the leaves. Sometimes in the occasional milkweed seed that reminds me of the oh-so-sad-so-terribly-incredibly-painfully-sad week we spent in the mountains after we said goodbye to her. Sometimes in the red tail hawk that flies above Cincinnati, though much less frequently than she did in San Francisco.

When I look at that photograph, I just miss my Baby Girl… in the flesh.

I am reminded each time I look at it just how beautiful she was. And how much she struggled with each breath. That’s when the tears come, when I remember those days in between,

She’s doing surprisingly well… this is what she’ll need in order to come home,

and,

She just can’t get enough air into her small fragile lungs, even with all this support.

That’s when I imagine what it would be like now if things hadn’t turned, if she had come home on oxygen and continued to get stronger.

*****

I know how lucky I am that I got to know her when she was alive. I know how lucky I am that I got to hold her, to kiss her, to sing to her, to touch her soft skin, to look into her eyes as she looked into mine. I know we didn’t all get that in this community of deadbabyparents… I wish we all had. I wish all of our babies were still here, in the flesh, alive and well.

Maybe I have more photos of my baby, but it doesn’t make it easier to have lost her. Nothing can make it easy to lose a child. Easy isn’t a word I identify with anymore. As a word, it feels trivial and doesn’t serve me much. But hard… that feels too simplistic. Sometimes it isn’t hard. Sometimes it just is.

Strange feels more like it these days. Strange because I can simultaneously feel acceptance and disbelief. So many days that is my normal. I still say to Tikva, several times a week, silently or out loud,

Oh Baby Girl… you died. You died.

Then a voice within me will remember, will insist,

But you lived, too. I won’t ever forget that you lived. And for that, I am grateful.

It may have been a blink of an eye, like a daydream… but I wouldn’t trade it in for forgetting the loss of you. Not ever.

*****

I was terrified last year at this time to spend Thanksgiving with our family. I was terrified to be up close and personal with Tikva’s cousin, who was born during the weeks in between my daugther’s birth and her death. I was so scared of being face to face with the reminder that my baby wasn’t there, that he was here and she was not. The fear became something bigger than itself, and I almost spent Thanksgiving separate from my entire family.

But in the end I went. And I sat with this beautiful little boy on my lap, felt his newness, looked into his big brown eyes that reminded me of Tikva’s. And I saw his bright soul, felt his pureness. The ease of being with an uncomplicated soul that a baby is. Connected to him as his own self, not as a reminder of what I didn’t have. He had no idea that he had a cousin who died shortly after he was born. One day he will, and forever he will remind me of the age Tikva would be if only…

But in that moment he was just pure love. And I let myself take that in.

And I looked around at my family all over the house, watching football, taking one more bite of pie while talking and drinking coffee. And I felt so deeply grateful for every single one of them who had held me together before, during and since Tikva’s life. The loss of the months leading up to last Thanksgiving didn’t take away my gratitude for all that remained.

I felt I was still here because of them. Because of my husband and my incredible and brave older daughter, my Dahlia. Because of my sister and my father and my family and my friends – my community. Because of my city, my ocean, my park to walk in, my hawks flying above. My yoga classes to cry silently in. My work to go to for a day’s worth of distraction from my thoughts, and time to read a babylost blog when I needed to go in.

And because of this place I stumbled upon in the early months after Tikva’s death. Where I breathed a sigh of relief that I wasn’t alone, and soon felt the uncomfortable mingling of that relief with the realization that the only way I could not feel alone here was for other parents to also have lost their babies. Where you just get it without my having to explain.

Thank you.

*****

I’m not much for holidays honoring consumerism and the massacre indigenous peoples. I’m not a huge fan of turkey and the gluttony that accompanies this holiday, especially when I know that many of us aren’t blessed to eat every day, much less such a feast. But I do get swept up – just a little – in taking pause for gratitude.

For me, gratitude after loss is different. It’s too simple to say that because of all I have lost, I appreciate what I have so much more. It has something to do with the impossible-to-shake-now-and-probably-forever recognition of just how fragile it all is… that all I really have, no matter how much time I get here, together with those I cherish, is this moment I am in. That understanding just doesn’t let go of me, and neither does the gratefulness I feel that seems to go hand in hand with it.

Because if all I have is this moment, then I better kiss my Dahlia one extra time today, better eat that last piece of dark chocolate waiting for me in the cookie jar, better call my dad to tell him I love him, better tell my husband one more time just how proud I am of him… and I better be kind and gentle with myself.

*****

Thank you, Tikva, for awakening me to the present moment more than anyone ever has. Because with you, I could do nothing greater than be completely present – unconditionally – for as long as we would get together.

And beyond.

.::.

How does gratitude feel to you now? Is it there? The same? Different? If you do feel it, what makes you feel grateful?

No News

It seems as though whenever I start to feel like things just might be a little bit okay the other shoe drops and I'm back to being an utter disaster.

The other shoe is always dropping.  The rug is forever being pulled out from beneath my feet.

The surprising thing is how surprised I am every time it happens.  I should know better.  And I do, in my head.  But it's my heart I have to worry about, it just doesn't seem to learn.

More bad news, you're thinking.  Someone's hurt or sick or dead or in trouble and the meager footing I've found isn't enough to keep me balanced in the face of more tragedy.

If only.

Just another baby on the way.  There are so many, always on the way, always fine, often unplanned or unintentional but a wonderful surprise every time.  Right?

But that's where I fall apart.  This good news not ours cuts me to pieces and then I crumple at how awful that feels.  

These days, I can handle bad news much better than good.  I'm like the welcome committee to Disaster-Land. I hear bad news and I'm like oh let me help.  A friend lost her father suddenly and it was the easiest thing in the world to ring her right away and share tears with her and hold her close and make sure she knew I was there for her if she ever needed anything.

I'm good at bad news now.  I can be sensitive and strong, caring yet practical, forthright and easy with the most difficult and painful of subjects.  But throw a little happiness at the people I'm close to and all I want to do is crawl away and hide.

We don't get to do that happiness thing anymore and that empty space where it should be swallows me whole.  It swallows my dignity.  It swallows my hope.

Everyone else but us.  Here we stand, frozen in the long, sad moment of our son's death, unable to achieve the only thing we want as everyone just zips on by, their lives moving forward with new children and new hope. 

It's the heart/mind divide all over again.  I'm thrilled for them in my mind, but inside my chest my heart cracks open and falls to pieces and I almost follow suit.

I want to be happy.  I want to be happy for them totally and completely.  I want to be psyched and loving and everything correct, but I'm not.  I'm twisted and shriveled.  I'm bitter and disgusted with myself and once again way beyond the edge of tolerable limits.

I thought the worst was behind me, literally.  I thought that the worst possible thing had happened to me and that from there it could only get better.  But instead it has been an endless slog through deep, smelly shit.  Obviously nothing is more painful than losing Silas but the problem is that we lose him over and over again in a million little ways.

The ripples of our loss continue to radiate outward from us, and there is nothing we can do to stop it.  Our tragedy causes pain in the people we love the most and prevents us from sharing in the happiness of those around us.  That is so ugly and revolting I can barely stand to be in this skin.  But there is no where else I can go and nothing else I can feel sometimes, besides sadness and anger and loss and grief, especially when the phone rings and it's good news at the other end of the line.

If this is a test then we are failing.  We are not excited when we get the wonderful news that someone is pregnant, and that just sucks.  The ring of that call is always a little shrill in our house.  So here's the deal, all of you that are currently pregnant now, you're all good, but after that it has to stop.  The rest of you, no more hanky-panky until we give you the okay.  We're up next.  We've been up next for so long.

***************

So what are your tips to help us get pregnant?  Tinctures?  Chants?  Meditations?  Roofies? And don't even think about telling us to just relax and let it happen because that's just not going to work.  Unless there's wine involved.  Should there be wine involved?

What Lies Inside

Just yesterday, the US Preventative Services Task Force recommended that women begin regular mammogram screening at age 50, not at age 40 as previously stated. Furthermore, they announced that going in every two years was plenty of prevention, not annually, thankyouverymuch. (There's a full-blown detailed article in the New York Times here (sign in may be required to read article), and a more scaled-down article at CNN here.)

The announcement, needless to say, is quite controversial. On the one hand, the panel points to reams of data claiming that overexposure is a much greater risk than not. That is, repetitive screening leads to unnecessary further testing, biopsies, and that ol' favorite, needless anxiety. Annual screening at 40 has not budged statistics regarding lives saved. (These new guidelines obviously do not apply to those with an obvious genetic component and/or family history of breast cancer.) On the other hand, doctors and cancer survivors claim benefits of potential early detection outweigh risks, and that early detection is ultimately what saves people.

Preceding this release was a JAMA article published last month raising the concern that standard early screening procedures for breast and colon cancer often failed to discover larger and more serious cancer elsewhere. The authors concluded that early screening should really focus on finding markers that lead to a higher risk and incidence of certain cancers, not just wholesale imaging technology for the population at large.

I am not at risk for cancer (as far as I know, and my genetic information has now been pretty thoroughly mined), nor have I ever been treated for a potential problem (knock wood). As someone who had her breasts compressed between two steel plates for the first time last spring, I'm breathing a small sigh of relief. I think.

While I'm happy to share this information with you as a public service, this is not a cancer blog, so let me get to the point here: My reaction to these two bits of news was not shock and horror or even a furrowed brow fraught with concern, but a "Well, I could've told you that."

My attitude towards medical imaging technology has changed radically in the past (almost) three years. Thanks to Maddy, I now believe it's wonderful . . . if you know what you're looking for. Looking for a fetus and heartbeat? There they are. Looking to see if there's a lump on the brain that corresponds with this strange feeling you have on the right side of your head? There it is. But I no longer consider it a useful diagnostic tool to scan and search and hope you find something . . . or hope you find nothing, as the case may be.

Before Maddy I too was caught up in the magic of ultrasounds -- the cute profiles, the ability to see some -- importantly, not all -- of my child's internal organs and make sure they were accounted for and in the right place. There's now doppler that can detect blood flow to certain organs. They can make sure the placenta is correctly positioned, and fluid looks to be abundant. And they can obviously pick up problems, too. I know many of you were told of the demise (or certain future demise) of your child via ultrasound imaging: the still heart, the organs pushed up into the chest cavity, the bulging brain.

But these are, how to put this, obvious problems that are evident when a wand is placed over your stomach and shoots back information to a screen. There is much that is not evident through this technology: ultrasounds cannot really "see" the umbilical cord (many of you may remember a technician pointing out "bubbles" on the screen, which compromise the cord). While they can take a headcount of most of the important organs, they tend not to search for less important things -- things that may be telling. But really, what it comes down to is: the technician is looking for a standard laundry list of problems. If your child has a problem that's not on the laundry list, it's likely to go undetected.

Which happened to me.

Due to bleeding well into my second trimester, a low lying placenta, ultimately an echogenic bowel, not to mention the standard NT screening and amnio, I had upwards of 15 ultrasounds through 32 weeks. They never found anything wrong with Maddy (save for the bowel, which disappeared by the follow up scan, and I tested clear of problems that could cause this). The technicians did their usual measurements, and went through the checklist of problems and always ended the session with "The baby looks great!" It wasn't until she was born that we realized her insides were a complete disaster.

But wait, there's more. When Maddy was alive, somewhere circa day two, she had an MRI. I will never forget the gaggle of doctors, young and old, huddled around the monitors discussing these pictures as if guest-starring on "House," completely oblivious to the fact that I was standing right there. (One doctor regaled us with stories of having to hand-bag Maddy -- they detached her from the respirator, obviously -- by lying down with his arm uncomfortably stretched out inside the tube.) They came to a conclusion based on these MRI images (which I had previously always held to be the "gold standard" of medical imaging technology), and told us her brain was malformed in a certain way. Children's Hospital read the same images and told us the same thing, and before she died they all led us down a street of potential diseases and complexes they were going to investigate based largely on this MRI reading.

And then they did the autopsy and discovered that wasn't at all what happened. Everyone, two institutions full of great, nationally-renown doctors, misread the MRI. Her brain showed something altogether different in person than it did via imaging, and thus the avenue of research was chucked. Because what was discovered at autopsy was so rare and weird, a new avenue has yet to be found.

I am not angry at these doctors by any means (she would've died anyway, and the MRI error only set them back a week on research), and I don't think anyone "missed anything." Nor do I "doubt" medical imaging on the face of it. I'm not going to stare at a strange blob on the screen and scream "No!" in absolute denial. I'm going to continue getting mammograms, but likely now at 50, and every other year unless a problem arises in the meantime.

But I am now painfully aware of modern medicine's limitations.

I recently got out Bella's and Maddy's ultrasound photos, and I was rather taken aback. What I remembered at the time to be outstandingly clear impressions of actual babies! Right there! Are those my cheeks? now seem to me incredibly blurry, hazy, ill defined-borders of blobs in a sea of dark. I understand measuring these blobs from one direction to another is useful information, but I also now understand that blob measurements don't guarantee that what lies inside is peachy keen. Maddy's spleen only measured 25 weeks -- an important clue that no one knew until she was cut open. She was blind, a fact undetected until birth. Her nervous system was liquified, and everyone missed it even when she was alive. Her heart was enlarged to the size of a six month old's, but this went unknown until it happened to stop less than 48 hours after her birth and was only confirmed in the pathology report. She was a full-blown metabolic disaster, but these things can't be seen unless you have a sample under a microscope.

My blind trust that bad things show up when illuminated evaporated. I'll never bravely wield my flashlight in quite the same way again.

Last spring I knew, standing there with my breast being twisted and flattened into a pancake, that this particular picture may not pick up what will eventually kill me. And that the lump it may detect may turn out to be something else entirely once tested. And I know if I'm ever pregnant again, that while I will want to be cleared of any surprises save the big life/death one at the end, and all the doctors will be eager to pull out their high-tech probes and search and measure now knowing a bit of what they're looking for, that it's unlikely they'd discover any of Maddy's problems in another baby until late in the third-trimester if at all. Most likely, problems like Maddy's would go undetected until birth. By which time, I'd still undergo a tragedy just of a different nature.

I no longer think of imaging screening as particularly accurate and to some degree, even useful. I completely get what the panel is saying about mammograms. I wish there was a magic wand to wave over people that would notify you of unseen cancers, lethally malformed babies, and everything else that lies inside awaiting to erupt. But for now, I deal with what's there as do the doctors, understanding that the information played on the screen is not remotely magic, or a "medical miracle!" It's a limited view inside a very dark and still mysterious place.

Has your experience with babyloss changed your view about doctors, medicine, or medical technology and if so, how? How much did medical technology play a role in your child(ren)'s death? If you decide to get pregnant again, do you foresee making any changes either in attitude or practice toward your care and screening?