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?

Random walk

Why are we here? All of us, I mean, humanity? Philosophers have been at this for millennia. So have uncounted and uncountable others. What we call regular people. Happy, unhappy, kind, lonely, content, brilliant, sad, successful, lovely, mean-- all kinds of people.

I found my answer long ago. I would like to say that I found it in my freshman biology class, but I would probably be lying. I certainly met the concept there, but it wasn't until a few years later, when my work in the lab required me to consider its moving parts, or maybe not even fully until I started teaching, that the idea blossomed and made itself a home right in the center of my brain. It wasn't a particularly painful process, as major mental model reconstruction projects sometimes tend to be-- I must've been ready for it, ready for this unifying idea to bring together life and science. And even still I find this understanding, this answer to be both astonishingly simple and just a little bit subversive. Not in the sense that it challenges rules and order, but in the sense that it comes back to shift the question itself.

This. This sea green thing is my answer. A molecule, or, rather, a type of molecule. DNA Polymerase-- an enzyme, an incredible, precise machine, modeled here hard at work. What DNA Polymerase does is replicate (copy) DNA (there is a bunch of related molecules in the cell performing various components of this function, from straight up copying, to fixing particular types of errors that occur due to impact of specific elements of the environment, like for example UV rays from the sun; but since they all share the central feature I am talking about, I am going to talk about it here as if it's all one molecule). In the picture, DNA is the tightly wound thing in coral tones. In reality, it's the sourse of heritable information in the cell. In (almost) every cell in our bodies. In every living organism on Earth. (Viruses don't count-- they are not technically alive, since they need a host to proliferate. Viruses carry their genetic information either in DNA or in RNA, a closely related and most likely older molecule.)

To make a new cell, whether to grow and develop, heal a wound, or create a gamete for procreation, we need to replicate our DNA. Cells, you see, come from other cells. And the way they do it, roughly, is to copy DNA, segreagate it evenly to the future daughter cells, and pinch off the membrane in the middle to make two from one.

DNA is a double stranded molecule. But the beauty is that the information on how to make each strand is stored right in its partner strand. So if you separate the two (and there are enzymes to do that part as well), you can create two copies of the original by following the instructions in each of the single strands. Which is what DNA Polymerase, that sea green thing in the figure, is doing. You can see the single strand being single in brighter pinkish tones towards the top of the figure, continuing in the same color towards the bottom. But you can also see the new strand that the polymerase is making in duller orangish tones below the position where the polymerase is holding onto the strand the closest.

One last bit of science before I get to my point. The information on how to make the new strand is stored in the old strand very locally-- for each position polymerase is to fill in, the information on what piece needs to be put in is stored right across, in the corresponding postion on the old strand. This means that if it accidentally inserts a wrong piece, it should be able to sense it, delete it (via a different part of the molecule than the one that puts the pieces in), and try again. This is one of the mechanisms that makes the machine so accurate.

So here's the thing. DNA Polymerase is very very very accurate. Mindblowingly accurate. But it does make mistakes. Like once in a blue moon. But, our genome is about one third of a blue moon long. So it makes a mistake about every other time a cell's genome is replicated (because it makes two copies every time it replicates one cell's genome-- a new strand for each of the old strands).

These mistakes are not necessarily bad things. Sure, some of them cause cancer and other diseases, and some cause miscarriage. But a lot of them are entirely harmless, occuring in a region that doesn't seem to have a function, or changing only the way the instruction is written in the DNA, and not the instruction itself. And some of them are actually beneficial.

In fact, my answer to that first question, the reason we are here at all is "because of that very low rate of errors of DNA Polymerase."

For example, a long time ago there was no oxygen in Earth's atmosphere. Mostly sulfur. So first, due to some of these errors (and maybe other genome-changing variations, such as copy/paste of whole sections), some bacteria developed a system to use the energy from the sun to change carbon into the form that can be used for growth, using a sulfur compound to make the system go. Later, another bunch of copying errors allowed some bacteria to start using water instead of the sulfur compound in that system. That process produced oxygen. And since water was even more abundant than the sulfur compound, slowly, very slowly, the oxygen-making organisms occupied more and more space, making more and more oxygen, eventually changing our atmosphere into what it is today.

Many-many other changes occurred through the billions of years Earth has been around, both before and after the events I described above. Diversity of organisms populating the planet today, diversity within organisms, difference in the types of organisms living in one type of environment versus the other-- ultimately all of this is down to DNA Polymerase making those very few mistakes every couple of blue moons. If it wasn't for it making mistakes, there would be no humanity. To be fair, there might not even have been yeast. But very definitely no humanity.

And this is where I jump to the dead baby thing. Because while some of these errors allow new traits and whole new species to emerge, some of them cause miscarriage. Some of them cause birth defects, some extremely challenging and some fatal. This is why I am so very comfortable saying that there is no reason for why my baby died. It was random, shitty piece of luck. I don't know whether the particular things ruled to be the cause of his death were due to the actions of DNA Polymerase, some other part of cellular machinery, or environment interacting with otherwise ok parts of his or my biology that caused it, and in this sense it doesn't matter to me.

This is why I never ask "why us?" The scientific answer to "why us?" is, I know, "because of random events that occurred sometime during gamete production, fertilization, implantation, or development." The answer to "why me?" (if someone asks me to differentiate that from the "why us?" question) is "because he died, and I am his mother."

My philosophical/religious answer is also grounded in this scientific reality. "Why not us?" is that answer. Why should we be exempt from the luck of genetic, developmental, or environmental draw? I just can't see a Higher Being intervening in cellular processes. When my rabbi tried to say something about God calling A home for God's own reasons, I asked her not to say that again. Followed by "if God interferes in DNA replication or chromosome segregation, God needs a hobby."

Though this measured and cerebral part is not all of my answer, it is a lot of it. But there is also an incredibly strong emotional part. So strong in fact, that this is one of the extremely few topics associated with bereavement that is guaranteed to raise my blood pressure. (Not in the bereavement police kind of way, where I wish for everyone to share my perception-- I strongly believe in to each her own. But in the don't tell me how to see this kind of way, where I react strongly to anyone implying that the existence of reasons is an undisputed point of agreement among the bereaved, even if one doesn't know what those reasons are in each particular case.)

I could hardly talk to my mother about A's death for months after because she would inevitably end up at "why us?" again. When I finally turned on her to ask why the hell not us, she had nothing coherent. "Because we are such a good close family" is what she came up with. I laughed a long bitter laugh before asking her to please tell me what kind of a family did deserve to have a child die.

When Monkey was born, conceived after more than two years of trying, and after an early miscarriage, I decided that it is impossible to do anything to deserve having a baby. The happiness brought into our lives by finally getting a chance to love and care for and watch grow this tiny being, it was overwhelming. If you asked me then, I probably would've come up with the inverse, that there is nothing (or nearly nothing) one can do to deserve to have their child die. As is, I don't remember actually articulating this last part until after A's death.

Either way, that's where I am-- it's impossible to deserve to have a healthy child, and it's impossible to deserve to have your child die. And, to me, there is no reason. There is no reason good enough for a Higher Being to take your child. And any Higher Being who would disagree is not a Higher Being I want to have anything to do with.

And my final point. Human beings want explanations. And when we don't have them, we make them up. One thing we tend to do a lot is look at a sequence of events, like X happened, and then Y happened, and turn it into X had to happen so that Y could happen, an explanation. And sometimes, if you control for all other moving parts in the system, it is even true. But most of the time it's nothing but a logical fallacy. So I differentiate the things we do after our children die from anything having to do with a reason for why our children had to die. I see what we do after as things we do to learn to live with our tragedies or as we learn to live with our tragedies. Some of these things may be healing, some may be revolutionary and helpful to countless others, and many (most?) are just things we do to get through the days. But to me, none of these things are a good reason. To me, none of them are worth a baby's life.

The way I see it is we move forward because we have to. Putting one foot in front of the other. And sometimes what we do with the shitty hand we are dealt is incredible. Sometimes what we become in the aftermath is stronger and more beautiful than before. But to me, it's not a reason. And not an obligation, either. Just surviving is amazing. Early on, eating and doing laundry, and occasionally showering. Later, engaging in community, real life or virtual, caring about one's job, about politics, books, crafts, anything really. It's all amazing. And, to me, none of it an answer to "why us?"

Do you have bereavement-related topics that get you hot under the collar? For example, how do you feel about the "why us/me?" questions? Are your philosophical or religious answers influenced by your life experiences and perceptions and/or by your professional knowledge?