still here

The recent Kitchen Table klatch here on Glow revolved around being online. Occasionally the contributors also touch base and assess how we feel about our online presence, here and elsewhere. I thought I'd put mine out, long-hand.

After Maddy died, for what seemed like an eternity, the internet was my lifeline. For the longest time I felt no one in my real life (save for my husband and therapist, and even then I sometimes wondered) understood me, and the only people who got what I was saying and had meaningful things to contribute were the faceless, sometimes even nameless people in my computer. I couldn't wait to climb on in the morning and read and feel and bathe in the comfort of like-minded people. I found it hard to turn away, and to turn it off when it was like a soothing balm, a reminder that this sadness wasn't my own and wasn't unique. Other people felt it too, this desperation, this nausea, this hopelessness, this disgust and ugliness and outright sad. I clung to them like lifejackets, and swallowed it all, whole.

I remember reading in one of the timely little books I forced myself to read that "integrating" this event into my life (they never used the words "getting over") would take two to five years. Years. I remember two months out wondering what a year even looked like, I could barely close my hands around the shape of a day. It seemed an eternity, and I wanted nothing more than to Rip Van Winkle myself to the end, or failing that have a lobotomy. I couldn't possibly wait that long, that much time couldn't possibly roll under my feet -- certainly not smoothly, or uneventfully, or dare I say quickly.

But somewhere along the way, it happened. The months went by, the years ticked off, and I find myself here, three years later  -- oddly enough, like the book said, more or less with this grief "integrated" into my psyche and flesh. It's hard to describe this feeling, of feeling better (better is relative, after all, and who wouldn't feel better than that?) but not complete; of feeling content . . . with what I have. What I have is obviously less than what I had, or what I wanted, but I've somehow managed to make my peace with it. Wow, even that sounds off, who can make peace with something that ugly and still medically unknown? Who can make peace with the horrible video replay that still occasionally kicks into my consciousness? Maybe that's not the right phraseology, but somehow I've come to accept? acknowledge? that my daughter died, she could've never lived, and there's no getting her back. There's only the street ahead of me -- and not that it's lined with fruit trees and arced by rainbows, but it propels me forward.

It's somewhat easier to point at the symptoms, the outward ramifications of this grief transmutation than it is to describe exactly what happened: Primarily, I no longer have that gnawing hunger to be online. The daily sense that I had something to dump is gone. I used to feel as though I was tripping over words, I had so many thoughts and themes to express. Grief was my job, and I don't regret making it so or dealing with it as much as I did. But I no longer write nearly as frequently I'm assuming because over time I've had less to say. It's obviously (see para above) hard to put into words exactly what I'm feeling now, which I'm sure is a large part of it, but the incessant sadness and emptiness and loneliness has dissipated gradually, and greatly.  Grief is no longer my job, at least not my full time one -- maybe it's that volunteer thing I pop into now and again. My life which I never imagined could be full of anything but tears is now full of stuff to do, and that crowds out my online time for better or worse. There will, I have no doubt, always be something to write about this grief and missing, it just won't be daily, and it will be more ephemeral and slippery as time goes on.

But I find it hard to turn it all off and shut it down and walk away completely. Probably because I still find it meaningful, and I don't think I'm done.

I wish I could give credit to the person who made this analogy, but I've long forgotten where I read it so my apologies: I believe online grief support is somewhat like a group that meets for an addiction. That is to say, there will be people who find the stories too close, too nerve wracking. The constant reminder will, instead of help them, draw them back in -- back into sorrow, into shame, into fear, or god forbid, into guilt. Eventually, they will decide this type of group help is not for them, this sharing and listening on a frequent basis -- it is more harmful than good, and to them I say: I'm grateful you saw this about this particular type of support, and about yourself. Treat yourself kindly as you go, leave and be well, and know the door is always open if you want to return with no judgment.

Then there are those who revel in the group experience, who speak and listen, where the stories reaffirm and validate, and the trust bolsters and strengthens. It all seems lighter going back out the door than it did walking in. And sometimes, sometimes, after listening and speaking for a while, you feel you have the strength to be mentor of sorts, to take your experience and sit across the table from it, and hopefully offer someone else an ear or a shoulder or an arm. And that activity of turning the ugly thing into something that possibly helps other actually turns out to help you, too.

I feel I'm at that point, where I can see the inseams and lining and do so without completely breaking down. I can stand outside myself in a way, and turn it around in examination in order to make a point with someone else. So I keep writing here, and keep commenting where I'm able in order to let others know simply, they're not alone in this. Not at all. That at the very least, I am here. And I will help in any way I possibly can.

And I keep writing on my blog, even though it's often sparse and in-between because that's how the grief is now, sporadic and hard to predict. Sometimes it's gentle moving through, a light breeze that raises goose bumps; and other times it's an unforeseen storm that suddenly turns and changes direction and finds itself right over me, dumping buckets and howling winds. The thing is, it may be an integrated part of me now, but it's not gone. Maddy's anniversary dates can still make me tense and sad. A throwaway thought from Bella can sometimes make me giggle at the macabre, or drop me to the floor. Sometimes just glancing at her picture can bring it all flooding back -- the sleepless nights, the dark hospitals, the unbelievability of it all.

Which is why I read, and why three years later I still write.

How do you feel about online support? Does it -- so far -- seem helpful or are you a bit skeptical? Do you think your view might change as time goes on? How far away are you from your grief and have you come to a place where it feels "integrated" rather than like some foreign appendage you need to try and come to terms with? How long do you envision yourself online -- reading, blogging, commenting, writing, sharing, listening?

new at glow: a designated discussion board for TTC, pregnancy and birth after loss

There was a time when I couldn't fathom pregnant women. Couldn't stand to hear about them, hear from them, see them, consider them. They represented hope I couldn't feel, trust I couldn't muster, assumptions I thought blithely naive. And I thought in the months following Maddy's death, with a probable cause of a genetic autosomal recessive disorder on top of infertility, that I'd never be pregnant again. Pregnancy was something to be mourned, something I'd likely never experience again in my lifetime.

There were days when I hopped online to find commiseration and community and found . . . . pregnancy announcements. People yammering about hope and faith and fear and months in the future I couldn't fathom and I felt lonely, left out, left behind. I often felt I'd never fit in, never get this community because I didn't or couldn't possibly want another child. There were blogs I had to read through my fingers, and comments left with pursed lips.

It hurt.

Having said that: I understood, even then, that wanting a subsequent child after loss is both natural and profound, and rife with both hope and fear (or in my case, plain vanilla denial). And that parents riding this wave on top of their grief need an outlet and a place to explore this great contradiction going on in their lives. It was their right to write, despite my feelings of ambiguity and sadness.

(As an aside, it took a few years -- years! -- for me to overcome this, and truly be able to stand behind my fellow bloggers with unabashed support and yes, even happiness for them.  As for pregnancy, it took almost three years of grieving, medical research, and diagrams to decide to try and have another baby of my own, a subject which I discussed on Glow, here.)

We've created a separate discussion board for conversations pertaining to conception, pregnancy, and (gulp) birth after loss. This is a good and gentle thing that benefits all of us in every stage of grief, growth, and healing.

Although I think most in this community are painfully careful to discuss these things gently knowing the hurt that exists out there, there are some who really can't bear to even read the title of the discussion that ensues. And all of this is all within your rights: to have a safe space where you can share your feelings, but don't need to face something you're not ready for, yet.

Due to the wonderful wealth of content on the main board, it's not possible for us to migrate existing mentions of TTC, pregnancy, or birth to the new board. But from now on, please abide by this distinction when adding threads or posts.

We should say at one point we tried to peel apart the forum into themes, and it just didn't work -- it's much easier for most of us to read through the topics in a single list to scan for what feels most relevant. So we're splitting the boards in two with some trepidation -- and we don't want the discussion here to become unwieldy and segmented into multiple sub-groups. But this feels right to us, keeping mentions of pregnancy separate. Then it's up to you to click into the place where you feel the most comfortable, with no judgment.

It took me almost three years to decide to risk getting pregnant again, and even now I'm still a bit nervous reading other people's rationales and experiences because mine seem so different. For some though, there will never be enough time -- there will never be a time when they will read such posts without a gnawing discomfort and an additional sense of grief. For all of you in this community, I'm hoping this is a mindful decision.

Thanks so much to all of you for all the heartfelt advice, support, and communion you give and receive on our discussion boards. It makes this safe space belong to all of us.

ttc | pregnancy | birth after loss

Well, How Did I Get Here?

I know for many (most?) of you, the decision to have another baby after the death of the same is as innate and natural and "Well, DUH" as drinking a glass of water or breathing. In fact, I'd hazard a guess that for many it's hardly a "decision" at all, but a compelling force or internal drive. Or something.

And not that it's easy for anyone to go back down that road, but for some, like me and a few others in my shoes who have more than just "Well, that was just a fluke of (really fucking abysmal) luck, really" it's not quite so easy to jump back into the saddle. It is, in fact, a decision. Maybe you have some grim odds to contend with on the next go-round, or a few more rounds of reproductive nonsense ahead of you, or perhaps you're just scared out of your mind. Or maybe some ugly combination of those circumstances. In any case, rather unlike, say, Elizabeth McCracken who averred from her hospital bed -- freshly blown apart by the death of her son -- that she would (!) indeed have another baby, I loudly proclaimed from the NICU: "Hell to the No."

So it's rather sheepishly that I stand here before you, three years later, 23+ weeks pregnant. What happened?!

Someone here asked me recently how I did it, how I made this decision, what my thought process was, or how I otherwise found my way from A to B, and I thought it would be useful to dissect my route in case anyone else out there had to face similar circumstances. And yet I sit here with my hands levitating above the keyboard and burping up the trail of breadcrumbs I've unfortunately consumed instead of leaving for the next traveller, because quite frankly, I honestly don't know how I got here. I'll set my water glass down, now.

I can in fact point to a few issues that -- when refocused through my new sporty Grief Goggles -- altered a bit and allowed me to sit somewhat comfortably where I am now as opposed to where I was almost three years ago now.

The primary contributor to this shift, you'll probably be sorry to hear, is simply the passage of Time. I remember when I first stumbled out my door to walk the dog in a haze of tears and blackness, one of my neighbors said something stupid like "It will feel better with time," and I wanted to punch her. (And oh my god, is she ever one of the sweetest women who said and did some simply lovely things for me a few days later.) But it turns out, it's one of those trite little sayings that I now agree with, I just think I should have the power to say and not a bystander.

Time does help. For starts, Time gave the doctors opportunity to fully and completely research what on earth happened, the results being: They have no fucking clue. But. They ran (and I found out last May continue to run) Maddy's samples through the Genome project multiple times, and presented her case at conferences, and with each day (month, year) that passes without a genetic hit, it looks more and more like the Ockham's Razor death rationale: undetected placental abruption and/or infection. Because the odds of a never-been-seen before autosomal recessive fuck up between two people from different ethnic backgrounds are apparently outstanding. And not to say our luck isn't piss poor, and those recurrent odds for the abruption/infection aren't daunting, but sure beats the hell out of 1:4.

But you know, the geneticist could still be right. And again, here's where Time has helped to an amazing degree: I have transformed from a pre-Maddy cautious optimist, to a post-Maddy pessimist, to a neo-post-Maddy realist. I no longer think in terms of odds, nor do I "hope" or "wish" or envision things. I now rely on the basic premise of probability, stripped of statistical odds: Either something will happen, or it won't. Either the baby will live, or it will die. I will get in a fatal accident on my way to buy groceries, or I won't. The chicken will catch fire under the broiler, or it won't. And I know for many such an oversimplification probably reeks of negativity and a 50/50 coin flip, but for me, in my circumstances, it has been remarkably freeing to simply let statistics go and deal with the end game. I used to mull over things like genetic testing risks for example, and now I simply throw my hands up: Either it will be fine, or it won't. (I did decide on genetic testing because I don't want any surprises this time around except for the big one at the end, but I certainly didn't sweat the odds of problems arising from said testing.)  And you know, if it isn't, I've been there. I've hence liberated myself from months of stress over minutia, and will simply wait until the end to find out what's going on. Thankfully, I'm a patient person.

Which leads me to Time and the fear factor: I was so completely afraid after Maddy died that I couldn't have sex let alone think about eventually bearing another child. And there was a time after I climbed online and realized all the other ways in which babies die when I wondered how we exist as a species, and how I could ever be talked into that again. I completely understand people who almost grow more fearful rather than comforted after reading other blogs -- just think, you could escape problem A and fall head first into problem B. There are those here who have lost babies more than once. Support groups can be sobering reminders that lightning indeed strikes twice.

But enough Time has passed that frankly I feel as if I now know all the ways in which babies can die (or at least the big group headings -- sometimes the subgroup can be a surprise). As I wrote to someone recently, I recognize all the bogeymen now. It's not that I feel immune to them, or don't think they won't pop up, it's that I no longer fear them, and they won't surprise me. I see them, lurking there around the corner, and in that way they've totally lost their power. Should one jump out, I'll say, "Oh, it's you," and know exactly who to contact for support. I've mentally walked my way to the end of almost every bad dream, and I'm strangely very comforted by that.

I want to put in an aside here that is too important for parenthesis: Some people here are dealing with the odds and the fear that not only will future babies be at risk, but their own lives as well. There are women reading here who (sometimes barely) averted death due to preeclampsia (and other complications), and the odds of recurrence of that particular problem go up steeply. I consider myself thankful that when I ponder my outcomes, I am alive at the end of each -- in fact, it was a huge factor in my ability to move forward. My worst case scenario has already been lived through, and I feel confident that I can and will make it through intact again should I have to. Others do not have this luxury of (at the very least) being able to envision themselves at the end of a process that goes horribly awry for the second time. And that is a whole other debate and discussion and risk taking endeavor that Time probably does nothing to ease. If you've had to make a subsequent decision that involves your life, I -- and I'm sure others -- welcome hearing from you in the comments.

Back to my final breakthrough: Enough Time passed that considering another child became it's own debate, not one necessarily connected anymore to the discussions we had about having another prior to Maddy. This was both a blessing and a curse as it turned out. We had moved since the last decision was made, we have new social lives, Bella is older and our parenting has changed dramatically along with her needs.  Thus, it was easier (and sometimes actually fun) for three of us to move as a unit, and yet it was also easier to imagine going through a (probably) stressful/problematic pregnancy.  We had come to the place in our hellish aftermath where we felt like doing things again: traveling, eating out, relishing time for the three of us, for the two of us, for me. My grandmother died last summer, and I saw my mother and my aunt work and grieve together and realized I wanted to at least try to give that to Bella -- no one should have to to deal with a senile me by themselves. And in that way, in this jumbled mish-mash of plusses and negatives, I feel as though this child within me now -- should he live -- will be his own person, with his own identity. He was discussed and planned and brought at least this far for a separate set of reasons, through different rationales. He will always be connected to his older sister -- it's hard to say if I would have had a third, and yet it's hard to say I would have ever had another.

I am not kidding myself here -- this will work, or it won't. I cannot claim to be learning anything about myself five months in, nor am I undergoing emotional shifts in my missing because I am pregnant, but frankly that's not why I decided to try and get pregnant again. I did this simply because I wanted another child of our own genetic make-up, and we'll know if it was a good idea -- or not -- come mid-May.

Did you decide to have another child after your babyloss, or was it more of an instinctual feeling that really didn't warrant discussion or debate? If you did have a decision to make, what went into your decision? How much time passed? What were the mitigating factors? What if anything shifted inside of you (or happened externally) to make a subsequent pregnancy possible? Did any of you decide "Hell no," and remain in that place?

Of Birds and Bees

We all bring a set of issues to the table of grief, whether it be a side-dish of marital problems, a salad of anxiety, or an appetizer laced with previous tragedies which this seems to compound. There's the bottle of money woes, the dash of low-esteem, and perhaps even (hidden under the napkin) the telltale odor of previous bouts with depression. All of these shade and color our experience, and shift our individual abilities to cope with babyloss. I'm not here to rate which are at least edible, and which could stand to be thrown into the compost, but I am going to discuss one particular problem many bring to the table and set down with a thunk, with the grace of an overcooked, 25 pound stuffed turkey.

That would be infertility.

Babyloss after -- during -- infertility is it's own peculiar injustice. For starts, infertility in and of itself can create it's own side excursions into mental trauma. As one avid reader here said to me in person recently, infertility is its own kind of grief.  For starts, what comes naturally in the pickle commercials and to your friends who seem to just look at each other naked and procreate, for you is not meant to be.  Frankly, that alone deserves some mourning.  There's the monthly reminder of failure, which you try hard not to internalize, but it's hard to go through more than a year without getting a bit mopey about overall body image and capabilities. Add to this the strain on marriage, which you try and avoid by making sex fun! And unto itself! But seriously, you're both eyeballing the calendar and know and wonder when it will be fun again, and secretly debate who exactly is letting whom down. Meanwhile all of your friends are pregnant and having babies and wondering what in hell you're waiting for? Time's a ticking! You go to your thousandth baby shower with a stiff upper lip and cry on the way home.

You finally go to an RE (that's Reproductive Endocrinologist) who runs you through a pantheon of testing. If you're lucky, you've climbed online and read up on this stuff so you're prepared for the discomfort of mulitple blood draws on various days of the month, watching radioactive dye run through your fallopian tubes, or having your uterus filled with liquid and monitored via ultrasound, or an uncomfortable uterine biopsy. There's the indignity of going in on day two of your menstrual cycle for a vaginal ultrasound to check the status of your ovaries, and the ever-popular post-coital testing where you run into the office when you should be lounging naked with a glass of something and a cig, and have them take a sample of everything that you didn't leave on the mattress to see if sperm can indeed make it through the secretions that you produce. And don't get me started on the discussion with your husband, which starts with "Honey, I really want to have a baby" and ends with "And so you need to go into the office where they'll hand you a jar. If you're lucky, this office may even have some inspirational magazines for you as well."

And that's just to get a diagnosis. If there is one to be found. Like so many things medical, after all of this, the answer is often "unknown."

Because now we know, maybe, or at least have an idea, there might be surgery to rid of endometriosis or fibroids or a blocked tube. Or IUI (Intra-Uterine Insemination -- you know, the old fashioned way, except with a turkey baster). Or if your husband presents a problem in the equation, IVF with ICSI (Intracytoplasmic Sperm Injection. Say that 10 times fast). Drugs are dispensed, often to yourself with syringes and detailed instructions on what needs done intramuscularly. Sometimes you skip right to IVF (In Vitro Fertilization), and sometimes there's a mind-blowing discussion about dead or absent sperm or a lack of eggs or a misshapen uterus that ends with the RE telling you about gamete donors and/or surrogates. Sometimes there's the unexpected surprise that all of these miscarriages you've been having are caused by a genetic problem carried by you or your spouse. Sometimes there's simply a vial of pills, sometimes there's the fluke of luck while waiting for the next round of shots to start, and sometimes there's the hellish conclusion that this will not end the way you intended when you walked in.

I should pause here and remind people who are staring at this jumble of acronyms and procedures like hieroglyphics that much of this testing and prodding and medicating and inseminating is not covered by insurance. Unless you're lucky enough to live in a small handful of states (or countries) that have rightly deemed infertility a medical problem necessitating treatment and hence coverage (and you're lucky to have insurance to begin with!), you're paying for this out of pocket. According to Resolve, the average IUI runs $865, depending on the medication needed; IVF's average (that's average) $8,150K, NOT including medication (which runs, on average, an additional $3,000-5,000). (For the record, I just used some banal progesterone, apparently necessary to keep embryos attached to my uterus but not covered by my insurance. The cost per 4 weeks of a daily single dose was $800, and I needed 8 weeks. And I consider myself lucky that's all I needed this time around.)

I know people who took out second mortgages for ART (Assisted Reproductive Technology), and people who used inheritances, and people who drew out of their retirement accounts and/or borrowed from family. All to achieve what many can do after turning off the late night news and climbing under the covers.

But let's say you get lucky, and get pregnant.

Worth it, right?

And now let's say your baby dies.

:::

Back up for a moment to what this reader said to me: Infertility is it's own kind of grief. It's a monthly dash of hopes, a monthly reminder of promises gone down the drain, often with the checking account. It's the thought when an embryo is tucked safely inside you that this is it! This is life! This is our life.  This blob will be my child! Only to be greeted by one line and blinding white two weeks later. Multiply this over, and over again. Possibly for years. Possibly having set your limit -- your emotional and financial finish line on the next attempt: this one is the last one. This one works, or we grieve never having children of our own, and move on to something else. Hope and faith and trust and marital communication may have left the building long before the death of a baby. You may have been desperate, on that last attempt, bargaining, wondering if anything would work.

In that regard, the death of a baby is part of this winding vine already invading your life. It's another loss, another dash of hopes, but this time on a much larger scale because . . . well obviously, it's different to hold a dead child than to stare at a negative pregnancy test, but there's also the thought that That might have been it.

Because you can't simply wake up one morning and say, Let's try again. As hard as that discussion is to have another baby after the death of the last, if you're infertile it's more complicated. There isn't the subconscious knowledge that Well of course this will work again like it's supposed to.  You need to pick up the phone and explain to people what happened, and what you'd like to do next. You need to go through a lot of the rigamrole again. You may need to alter how many embryos you transfer, or depending on why your child died, move to gamete donation or surrogacy. Perhaps you need to now fork out for PGD (Pre Implantation Genetic Diagnosis) (Incidentally, another average of $3,500 on top of your IVF expenses) to make sure any genetic problems aren't being passed along. You need to set to set a new limit, a new finish line, and further deplete your bank account. And each month that passes with an HCG (Human Chorionic Gonadtropin) test of two or less, you sink further into a bleak place. Perhaps that child was it. The only time this would work.

And sometimes, that is it. There are people here in this community, who read here, who reached the end. The end of the line. The money tree dried up, their emotions were frayed after years of trying and failure, and they needed to stop and move on. Move on with another life than the one they originally envisioned when they simply set out to have a baby of their own making. And that, putting behind not only a dead child but the attempt to have another of your own, is it's own crucible of grief. Inextricably wound up with the death of a baby that we're all familiar with, but branching out and encircling so many other parts of your conscious and marriage and identity and being. And like any loss, this deserves its own moment of grief, too.

Did you seek Infertility treatments in order to get pregnant with your child(ren)? Are you having to with a subsequent child? For you, how does your babyloss fit in with infertility -- does it stand alone, or has it become a chapter or branch within a greater struggle? Do you have limits? Have you met them already? 

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?

Foreign Language

During our kitchen renovation last year, we moved one of our favorite paintings out of the way, but stupidly not off the floor. And when the reno was done, we clearly didn't hang it back up fast enough because one day we discovered the glass had shattered.

My husband had given me a bunch of old maps of our neighborhood for Christmas '06 -- two months before Maddy died -- and told me the map store guy recommended a small, "doesn't really have a storefront" framer. Said he was the best in town. Of course, I never took my maps in, they just sat and collected dust, but I dug up the name of the framer when I needed my picture fixed two years later.

I called the number, and was greeted with a recorded message: he was currently scaling back his hours due to his wife's death. He left an email on the message, so I sat down and composed what I thought was a fairly simple note: You were highly recommended; I have this painting with broken glass; and I'm so very sorry to hear of your wife's death. I may have added a sentence that I understood completely the need to scale back hours, and realizing that I was a new customer anyway, I would come in at his convenience.

He called back within hours, and after arranging a time to bring in my picture, he said "Thank you so much for your words about my wife." I said again how sorry I was to hear of his loss, and he went on to tell me it was after a struggle with cancer. I asked how old she was -- in her 50s. Ugh.

When I went into the store, he had a small picture of his wife up on his desk. We chatted again, I asked how he was doing ("You're very understanding," he said appreciatively at one point), we talked about her battle. And then the story spilled out: as it so happens my house, for a few decades in the mid-1900s, was a school of sorts. He saw my address, and confirmed which house was mine, and it turned out he went to this school. He eventually taught at this school. He met his wife at this school, in the building that was now my home.

My heart broke in two. I invited him to please come over some time -- we'd love for him to walk around and point out what was where as he remembered it, and place some of the ghosts in their appropriate rooms. But to think, if I had not been so engulfed in my own grief, I would've made this trip much earlier -- two years earlier -- and they both could've come over and relived something together. For some reason I felt miserable. (During this entire discussion I never once mentioned Maddy, though I may have alluded to "a personal tragedy.")  We spoke some more, he fixed the glass on my painting, and I have yet to take in my maps. I need to call him.

:::

My mom was really quiet on the other end of the line. I asked how she was doing, and she said, "I guess I'm just getting used to the idea that my mom isn't here anymore." For some reason, I blurted out, "Grief isn't linear."

Which sounded too pat. So I started gently explaining that in my opinion (trying desperately not to sound like I had written this a million times in a million venues), that perhaps you went through the stages, but not with any rhyme or reason. It wasn't better, better, better every day until suddenly . . . . all done! You went through a stage, sometimes really fast, but maybe you circled back around and did it again a few months later. I pulled out my traffic metaphor: sometimes you're in the express lane, sometimes you find yourself stuck in traffic. You can be humming along only to make a turn and find yourself lost, or in a dead end.

"That makes a world of sense," said my mother. "Thank you."

:::

I discovered a neighbor's father had died during August, my personal month from hell with the endless houseguests and my own grandmother dying. I ran over a card on which I wrote (after saying how sorry I was) that I was looking forward to hearing some stories about his father the next time we got together. And to please call if he needed anything.

:::

I have given up thinking that I am to find or gain something positive from Maddy's death. It was brutal and ugly and senseless, and I've decided I really don't need any "silver lining" in order to move forward. Maybe it will slowly hit me one day, maybe not, and I'm fine with that. I've stopped looking or caring, in any case.

But some things have certainly changed in my behavior and mind's eye, and some of those things I would venture to say for the better.

I can now talk about death. I am completely comfortable talking to people now about all things grim reaper.

There is no way I could've had any of the above conversations prior to three years ago -- I would've been tongue-tied, perhaps mumbled an "I'm sorry," and maybe listened, but probably in hopes they would soon change the subject so I wouldn't have to. I remember standing around a funeral for a father, a distant relative, and being so crushed for his wife and children, and having absolutely nothing to say. Nothing. Seeing the vacant miles of space behind his teenaged-children's eyes, and not knowing how to acknowledge that I saw it, too. Just standing arms akimbo, feeling very lost and removed.

Now, I'm right there with them. I listen attentively, as long as they need to talk. I ask questions. I don't state platitudes. I am not so bold as to say I am empathetic -- I don't know cancer, I have never lost a spouse, my parents are still alive. I only have the briefest of experiences with dementia, and second- and third-hand relationships with hospice. But I know grief. I know the contours, the expressions, the varieties -- each with a differently shaped leaf. I can sense now when to simply be quiet, when people don't want to talk, and when they need to dump. I am no longer fearful or awkward around graveyards, or DNR discussions. I am no longer afraid when people cry. I know this. This I can do, for them.

I can -- usually -- rather easily feel what other babyloss parents are feeling, even if the circumstances are wildly different and their reaction is polar opposite from my own. I know the language now, all those words about "loss" and "never," "why" and "beautiful," but mostly "sad," "crushed," "hopeless."   Certainly it hurts to read of new deaths in some respects, but I feel a sense of obligation to bear witness to the stories, to roll the name(s) off my tongue, and simply (virtually) sit with the parent for a few moments. A few moments -- that's all it hurts me any more, but I know for them the moments will stretch and multiply and crawl until it seems they're drowning. It's the least I can do now that I know I can do it.

I abide.

Some would say this is a skill, or even a gift, that I didn't possess before, and I suppose I should be thankful and consider it a positive consequence to my own journey through hell. But there are days I wish I didn't have it, this ability to sit and be with death, and that I still felt fear, awkwardness, and taciturn bewilderment. Because it would mean none of this ever happened.

Have you experienced a death or another person's grief (outside of babyloss blogs) since the loss of your child(ren)? How did you handle it? How did it make you feel? Is it easier or harder or unchanged the way you acknowledge others' loss?