snapshots: parenting after loss

 
I know I haven't written here in many months. In fact, I haven't visited at all in many months. During my pregnancy with Naama, returning to this place became too much, this special and sacred place where over the past few years I opened up my heart and received so much from you in return. For anyone following along, I hope you will forgive me for my absence. I still can't quite explain why I couldn't write or come here for so long, other than being quiet was what I needed most during the spring and summer.

Naama was born on June 26, 2013 at 37 weeks gestation. Her name means pleasant and calm. She came into the world with a full head of black hair weighing 2700 grams (just shy of 6 pounds) and measuring 20 inches long. She has made my wildest dreams come true.

I don't go over all the details in my head constantly anymore. The details of what happened to me, to us, is too painful to take in all at once. But not infrequently, I catch a glimpse of something and I am transported back to that cruel, rainy winter and everything that transpired then and in the years that preceded it and during the months that followed.

Sometimes I am walking down the windowed staircase of the medical school research building to my research lab and I catch sight of the old inpatient building that is now defunct. I look across at the windows (shutters now drawn) and balconies of the third floor -- the women's ward -- where Aminadav and Naava were born and died in the final months of the building's use, before all the inpatient wards were relocated to the new tower. 

And I am back.

I remember my view from the hospital room, a nice view, really, with the Judean hills off in the distance. The grayness and bleakness of that drab winter, which was particularly cold and rainy. Early mornings being sent down with an orderly in my wheelchair for ultrasounds -- during the first hospitalization, hopeful -- just a bleeding spot in the placenta -- and then more bleak, the ones where I asked the technician to turn off the big screen and only Y could bear to look at the small monitor: two hearts beating, two beautiful, healthy babies, except one immobilized by no fluid left and the death sentence that awaited my two precious bubs.

I remember lots of the little details, and perhaps they are the ones that hurt most: the moment of shock and horror of my water breaking all over the bedroom floor while on bed rest after being discharged from my first hospitalization following my partial abruption. Knocking frantically on my next door neighbor's door, the one with the balloon animal-covered van who ran children's birthday parties, whose popcorn cart infringed slightly on our storage space in the basement. "It can still be, it can still be!" she exclaimed, mostly to herself.

Leaving the hospital through the mall once it was all over, walking past the baby store with my deflated belly and empty arms with the realization that Y and I were leaving the hospital as two and that was it, having gone from a family of two to four and back to two again. It would never be all four of us again.

Y telling me on the way to the car: Just so you know, we're not going back to my car, it's a rental because my car is in the shop because I swerved off the road and totaled it three weeks ago in the rain on my way home and I didn't tell you because I didn't want you to worry. 

I remember going home for three weeks and then going back to the hospital and my massive hemorrhage and the new worries about my platelets. It seemed like I couldn't keep myself out of the hospital.

My mother came from Massachusetts to Israel to stay with us and I wanted her in the apartment but not in the same room. I sat on the computer by myself and discovered a Glow in the Woods and searched every variation of "abruption" "PPROM" and "twins"  on PubMed again and again, searching desperately, pleadingly, for a way to save my dead babies. If only I could figure out the magic formula retrospectively, maybe I could bring them back. Maybe I would get a do-over and they would live.

Then, finally, is the second half of my story: redemption. When Naama was born, right after her Apgars, the nurse placed her immediately on my chest. I remember looking down at her in shock, stunned -- was this really my baby with her mop of thick black hair? Mine? Alive? Even when I was in labor, the sublime reality of it all seemed thousands of miles away in time and space.

But the photograph Y took in that moment captures something else -- a tiny hand reaching up, up, tightly clasping the round "N" and "A" discs on my necklace. Reaching out into the big world and embracing her big brother and big sister.

Does she know? I often wonder.

Usually I am not prone to those type questions, but I like to believe that my beautiful, vibrant, living daughter is connected to her older brother and sister in ways we don't necessarily understand. I do know that she would not exist had they survived. This is the complicated reality of parenting after loss. I could never had all my children alive, for Naama's existence is a direct consequence of Aminadav and Naava's death. To pretend anything else would be dishonest, though the reality is impossible reconcile.

When Naama was three days old, I read her her first book, Goodnight Moon:

Goodnight room, goodnight moon, goodnight cow jumping over the moon.
Goodnight light and the red balloon. Goodnight bears, goodnight chairs,
goodnight kittens, and goodnight mittens. Goodnight clocks and goodnight socks. Goodnight little house and goodnight mouse. Goodnight comb
and goodnight brush. Goodnight nobody, goodnight mush and goodnight to the old lady whispering "hush."  

Goodnight stars, goodnight air, good night noises everywhere --
 

This part came out in a choked whisper. Hadn't I recited those same lines for Aminadav and Naava in my head when they left us? Many parts of this parenting gig have left me in tears of both gratitude and the knowledge of what was lost, especially in those first few days, when the details of another labor, another birth story, came flooding back. It all felt very familiar. And I suppose that in some parallel universe, I had done all of this before. It was all for the first time just as none of it was for the first time.

One of the most helpless things about losing children at birth is the inability to parent them. It is a biological cruelty that when you are left empty-handed, you are still flooded with the same maternal hormones that catapult the rest of us into the nurturing and caretaking of mommy land. And so all of these rituals of newborn care, the tedium of the feeding and rocking and diaper changing, took on new meaning for me, all of the things I couldn't do for my sweet twins. In her memoir "An Exact Figment of a Replica of My Imagination" Elizabeth McCracken writes about her son Gus, born after the stillbirth of her first son Pudding, and captures the notion of the parallel universe far more eloquently than I ever could:

Sometimes I look at Gus, and it all feels very familiar. Not him. He was a skinny just-born, with cheekbones and an incensed cry: he looked like an old man who’d been outfitted with hands and feet a size too big and he wanted to know to which knucklehead he should address his complaint. Now he is fat and looks like a retired advertising executive. He is gorgeous and inscrutable. I tell you, I’ve never seen his like. But taking care of him, changing him, nursing him, I felt as though I’d done it before, as though it were true: time did split in half, and in some back alley of the universe I took care of Pudding, when he was a tiny baby, and this reminds me of that. There’s a strange museum/ gift shop/ antique store/ tourist trap in Schuylerville, New York, the next town over. In front is a reconstruction of colonial Fort George done in wood cutouts — a soldier in stocks, Revolutionary soldiers in profile, all cut with a jigsaw and painted in bright colors. In front is a sign that says: An exact replica of a figment of my imagination, and that is what this life feels like some days. It’s a happy life, but someone is missing. It’s a happy life, and someone is missing. It’s a happy life —

I think she has it just right: "it's a happy life, but someone is missing. It's a happy life, and someone is missing. It's a happy life --"

dusting off the cobwebs

Its been a while. Quite a while. Since I last posted, we passed a lot of significant milestones. All of these milestones were pretty hard, and they actually made me feel less like writing. Instead, they made me want to crawl into my own little cocoon and burrow there for a while.

The Big Dates

The first big date was 19w2d, which was my PPROM milestone with the twins. It happened to coincide with the weekend before my SIL's wedding, so it was also a hectic family time. I spent a lot of time crying in the shower and crying in bed that weekend. Hitting my PPROM milestone was harder than I anticipated and made me sadder than I thought it would.

I was also incredibly fearful. I knew there were no ominous warning signs that my water was about to break, but it still felt like maybe there was something karmic or evil about that particular gestational age that would rob me of this little one, too.

My FIL made a toast at dinner in which he listed month by month all of the babies born in our extended family over the past year and he omitted Aminadav and Naava. Given my already fragile emotional state, this really made me feel like crap even though I know he meant no harm by it. I didn't think it was worth it to call him out on it, especially not on my SIL's wedding weekend when the attention should deservedly be focused on her, but it did really upset me and the timing was just very poor.

Y's grandmother noticed the omission and also commented that she always remembers them. We shared a little cry and that made me feel much better.

Later in the week, I reached the gestational age where I lost Aminadav and Naava. Getting to that point was surprisingly less emotionally charged and sad for me than my PPROM milestone. I felt a small weight lift from my shoulders as the day ended.

And just a few days after that was the Hebrew anniversary (yahrzeit) of Aminadav and Naava's death. I knew that being essentially on the same calendar with this pregnancy as I was with their pregnancy, all of these significant dates would come one after the other.

Their yahrzeit falls on the Jewish holiday of Purim, a particularly joyous holiday, ironically. Y and I decided not to celebrate. Instead, I lit their yahrzeit (memorial) candle and we went out snowshoeing in a nature reserve.  I wanted to do something solitary in nature, so this felt right to me. In the evening, we went out to dinner. I spent a lot of time crying on their yahrzeit and the crying was very therapeutic for me and actually made me feel better, as I find sitting in the depth of my pain on occasion often does.

Then about 10 days after that was the one year anniversary of their birth/death on the English calendar. That date was actually much easier and lighter for me than their yahrzeit. I focused on my appreciation for the blessing of their brief existence instead of on all of the hurt, pain, and what-ifs and should-haves.

The Babe and Me

Thank goodness this pregnancy continues relatively uneventfully. My only major complaint is that I have frequent contractions and cramping/pressure, which coupled with my anxiety makes me really nutty. I go in weekly for a tv u/s to measure cervical length and take a quick look at the babe. My cervix continues to hold stable, usually measuring between 3-3.7cm. This is obviously a big relief.

At 21 weeks, I had my anatomy scan. Everything looked good and we were told for the 4th time that baby is a girl :) The only notable finding was an echogenic focus on the heart, but we are told that with improving ultrasound technology, this finding is becoming increasingly common and is very unlikely to have any significance in light of our first trimester screening and quad screen results.

Baby girl was super active during the anatomy scan, which was pretty cool to see. I have an anterior placenta again this time around, so movement was a little muted at first, but during the past few weeks I have been feeling consistent movement including some really good jabs and kicks that are visible from the outside, which is pretty cool. I started progesterone on the same day as the anatomy scan.

I had a detailed placenta scan at 22 weeks, which showed my placenta looks great. This is also a big relief since it seems placental issues are what began the series of disasters that ultimately resulted in the loss of the twins.

I've made one trip to L&D, which was actually a positive experience, but hopefully we won't have reason to repeat it for many more weeks. I was having menstrual-like cramping and lower back pain for a few days that wasn't going away and I was scared of PTL. My MFM happened to be on call that night and she was very reassuring. We were in and out within an hour with the knowledge that even if I was contracting, my cervix was stable.

I met with the hematologist again a couple of weeks ago. The current plan is that I can get an epidural as long as I take clotting drugs prophylactically beforehand (the concern with an epidural with a bleeding disorder is a subdural hematoma). I will see her again in May.

I am really fearful and anxious these days. I am so scared my body will screw up. I know these next few weeks until 28 weeks are really critical. I relive my water breaking all of the time - it was such a strong sensory experience. 

I know that right now I am very "lucky." Lucky in that I had a relatively easy journey (relative to my previous history, anyway) conceiving this pregnancy after losing the twins and lucky in that so far, I have had a pretty good go of it this time around. (It feels a little ominous and foreboding to write that.) I have experienced enough to realize that this journey has everything to do with dumb luck and little to do with deserving.

I exist in this really weird place where I am constantly trying to mentally prepare myself for losing this dream little girl while in the same moment I can look at cute baby clothes and read carseat safety reviews. Stuck between preparing for the future I have dreamed about for so long and preparing for the death that I pray won't happen. 

                                                   23 weeks

these two lands

I hold a kernel of hope deep in my heart that this pregnancy is going to end in a baby that we get to take home. It seems a bit bold and gutsy to confess to that, but it's true. I am not confident in my ability to carry to term, but I think the odds of me getting to something like 28 weeks are much better with a singleton and I think that each new week that passes by with no bleeding bodes well.

Still, it is hard not to be consumed by my fear. This is a different pregnancy, a new pregnancy, and yet it all feels so familiar. I have done this before, walked many miles in these shoes exactly a year before, and we all know how that turned out. Sometimes I even slip up, forget it's not Aminadav and Naava in my belly, and sometimes friends and family slip up, too, asking a question about 'the babies.' If only we really got a do-over, but Aminadav and Naava are still buried in the ground in Israel and in my belly I carry a brand new little one in Canada - the little sister or brother we haven't met yet.

I suppose it makes perfect sense that this winter feels like an extension of last winter and that my pregnancy with this baby feels like an extension of my pregnancy with the twins. After all, this winter and last winter, those babies and this baby are part of the same story and the same journey.

The memories of the terrifying moments are so visceral, so engrained in who I am, it is hard to not constantly relive the sheer terror of my water breaking (exploding really) way too soon and all of the sensory details of the experience.

I was really nervous during the first trimester about an early miscarriage and then I had a brief respite from anxiety, but now I feel my fear slowly creeping back up as I approach the gestation where I began having complications with Aminadav and Naava. 

Every morning I wonder is this the day I will go to work, end up in the hospital, and not come home? Is today the day I'll start bleeding or the day my water will break? Is today the beginning of the end, or just the beginning of the beginning, like it should be? 

I exist straddling a weird in-between of hope, excitement, and fear. Just like last time, I want to read reviews of fancy stroller models and daydream about baby-wearing and making my own baby food, but in my sleep, I give birth in tens of bizarre and disturbing ways to a baby that is not yet viable. Sometimes in these nightmares the baby is somewhere on the floor but so small I wonder if I will find him at all. 

There are limitless demons that can haunt you once one truly awful thing happens - one of those sort of things that isn't supposed to happen. It opens so many new possibilities and avenues of horror. All of the sudden every freak complication seems equally possible because you are one of those people.

The belief that there are those people and then there's you is what keeps your imagination from plunging too deeply into the menagerie of horrors that could befall you. But once you become one of those people that wall comes down and you skate on thin ice because every manner of disaster could happen to you. Suddenly, the improbable odds and freak statistics feel very personal.

So I carry this kernel of hope deep in my heart; this belief that this time will be different but I have another foot grounded in a land of fear and disaster. Praying that in the right time I will land, two feet on the ground, with a screaming, cooing bundle in the 'normal' world - the land of the lucky.

**In mundane medical news, I had a MFM appointment on Thursday. Cervix is funneling a tiny bit at the top, but with fundal pressure, the cervix doesn't go below 2.8-2.9cm and my baseline measurement at 13 weeks was 3.0cm, so there is very little if any change there. The NT results combined with the first trimester screen gives us a 1:29000 odds of trisomy 21 and the appropriate PAPP-A levels combined with u/s suggest that my placenta is functioning well at this point. I think we will do the quad screen at my appointment this week.

I had a hematologist appointment on Friday. They asked me to enroll in a study following pregnancy and medical outcomes of women with bleeding disorders. There is so much known about the role of thrombophilias (clotting) disorders in pregnancy but much less known about the implications of bleeding disorders in pregnancy. The suggestion that my bleeding disorder may have played a role in my abysmal obstetric history is actually pretty unsettling to me.

week 10 update

Today I am 10 weeks + 2. I am beginning to gain a little more confidence in this pregnancy, or at least feel a little more positive about our chances of making it through the 1st trimester, but I still worry constantly that everything could change in a second, maybe without me even knowing it.

I know I have written about it many times before, actually in a way that was eerily foreshadowing when I was pregnant with the twins, but I hate how when things go wrong you feel like such a sucker - like how could I have even thought that everything would turn out ok or how was I was oblivious to my fate.

Yet when things go well, you tend to feel just a little smug or you even berate yourself for having so much unfounded anxiety when everything is just dandy. And as I have also written before, of course the only thing separating Mrs. Sucker from Mrs. Smug is, well, the outcome of the pregnancy, but it's really something you have zero control over and sometimes while all available data points to yes, the outcome is still a no.

In the past week, we unearthed the doppler and I've been able to listen to the babe's heartbeat, so that has definitely been reassuring. Morning sickness has steadily gotten worse, which makes sense because it peaked pretty late with the twins, too. So far I have needed IV rehydration twice which is pretty unpleasant, but the intense vomiting (fun!), still hasn't been as frequent as with the twins. I am now taking diclectin a few times a day, which is a combo of vitamin B6 and antihistamine and that does seem to help, though it makes me really drowsy.

I also started packing up clothes that are clearly too tight and I've now taken out my maternity clothes. This feels like a leap of faith that I am just not totally comfortable with, but I am beginning to grow (mostly just bloat, I think) and it is pretty impractical to have all of these clearly too-tight clothes taking up space. I am more comfortable in mat jeans now than my regular jeans, but I don't plan on putting on any maternity shirts until the start of the new year, which will correspond to the beginning of 2nd tri, if I make it that far. I feel like maternity shirts make it really obvious, so in the mean time I prefer sticking to big sweaters.

I am weaning off of progesterone now, though the plan is to continue Prednisone until 12 weeks and then slowly taper between weeks 12-20. Even though I am on a low dose, I am definitely beginning to feel the side effects of 2 months of Prednisone but I can't complain.

I still have so much unresolved grief for Naava and Aminadav, which isn't at all surprising, but this new pregnancy definitely sometimes intensifies my grief. I just wish so so badly I had the chance to really get to know them and raise them. It is all so confusing - I know I wouldn't have THIS little one on the way if they had survived and I feel much more of an attachment to them than I do to this baby (I feel horrible just writing that) and I suppose all of that makes sense because I carried them for much longer and delivered two very real to me little people, whereas at 10 weeks this pregnancy is still obviously much more abstract.

Sometimes it definitely makes me feel guilty, like I am not 100% there for this little one. But I know that should this pregnancy G-d willing continue, my love for this baby will grow and grow, even if it might take me longer to become attached due to my past experiences and my ongoing grief. And little baby, I can't wait to get to know you and learn who YOU are.

 I think that is all the news fit to print in our corner...pretty boring, I think, but for now boring is good!

the worst thing that could happen

Funny story: We met a couple at my in-laws' synagogue today who had lived in Israel for a while. Their 4th child was born in Israel at Hospital X. The wife was saying to us that having a baby in Israel was difficult and that Hospital X was a bad experience for her. 

She detailed her list of complaints (I do not judge them at all, but suffice it to say her and her child are both happy & healthy today). Y and I were both smiling and nodding when she exclaimed "Omg! I hope I didn't just scare you from having a baby at Hospital X!" Once she walked away, we couldn't stop laughing. Needless to say we didn't mention our twins born there.

what we (think) we are owed

A few weeks back, Y and I went to our first infertility support group meeting. I am not sure that it was super helpful to us because most of the couples were at a different stage of their infertility journey, but the facilitator was great. One comment she made in particular stuck with me.

She said that when we first set out trying to conceive, we think that we are going to get the gold -- the gold being everything we want and on the time scale we want it. And then maybe it turns out it is taking longer than we thought and we need a little pharmaceutical help -- we are now going for the silver. Maybe then it turns out our problems are in fact pretty big so after the silver doesn't pan out, we're going for IVF  -- now we're aiming for the bronze.

Maybe after that we are in a position where we are getting comfortable with the idea of donor egg or a gestational carrier or we are pursuing adoption, and so we give up a little more of the original dream. I don't think the point was that any of the outcomes that aren't the first one -- everything we want and on the time scale we want it -- is somehow ultimately less good, but more that in order to get it, we may be finding ourselves sacrificing more and more of our original vision and all the while time is passing.

The truth is, I don't remember the original context of her remark, but it crystalized for me something really important. When we found out we were expecting twins and then later on, when we found out we were expecting a boy and a girl, I felt like everything that had been taken away from me in this journey was suddenly and unexpectedly gifted back, just like that.

In other words, we were going to get the gold. It wasn't without lots of sweat, tears, perseverance, sacrifice, and hard work, but we would get our happy ending -- what we were owed. The world was suddenly a fair place again, just as I had always known it to be until infertility and loss entered our lives.

We would have the two children we would have had if we had control over our reproductive fate and in the same time frame! A son and a daughter! It seemed too good to be true, but we did work really hard to get there, so why not? Why couldn't we have it all, get the gold, after our shit luck until then? It happens to others in the infertility community all the time, really -- from zero to two -- just like that.

Everything that happened to us until then infertility-wise sucked but it was tolerable and livable. It was something I was willing to put up with and rationalize, if we could then just get our happy ending. For lack of a better term, it was all within the realm of normal infertility suckiness. Par for the course.

And while it might have seemed sudden and unexpected when it finally worked and we conceived two beautiful babies, I felt like we deserved it because we are fundamentally good people who had worked very hard to get there. (But the unanswerable question that many of us avoid altogether in the moments of dazed self-congratulations then becomes what about everyone else on a similar road who has not been granted the same good fortune?)

Owed, deserved -- what dangerous words and concepts these are. I think you can probably already see where I am going with this.

I wasn't naive about the risks of a twin pregnancy -- if I look back at my posts during that period of time I don't think I was every really happy-go-lucky or flippant about the pregnancy. But deep down, even when the pregnancy became complicated, I fundamentally believed we would get our take-home babies -- that this would be very hard and scary, sure, but that we would also all make it out of this alive.

Even if you are particularly anxious and fearful, I don't think you ever really believe that you will be the horror story. In fact, isn't imagining the worst over and over again supposed to be some sort of protection mechanism? I am pretty sure that I subconsciously thought so.

So, obviously, in the end, we did not get the gold -- we came really close but we didn't get gold. Or silver. Or bronze. Actually, we didn't even place, we just pretty much careened off the course entirely.

What I want to get back to is this idea of what we are owed and what we deserve. It is something I struggle with in the present constantly -- this notion that we do all of this stuff and go through all of these trials and therefore it has to lead somewhere. It all has to be for something -- to ultimately fulfill some purpose.

But sometimes it's not.

Many times I see that women who have achieved their happy ending attempt to rationalize what it took to get there and find some meaning in it. For many of us, the journey can never just be an endless trek of failure, pain, and suffering -- it has to mean something and it has to have all been for something. The alternative is just too depressing and soul-crushing. It is not too difficult to rationalize the journey if you do get the happy ending, as I would have if Aminadav and Naava had come home with us.

But what about when that doesn't happen?

I know now I will never get the gold. I missed it entirely. What I mean by that is even if I do eventually get my living child(ten) in one way or another, I have lost too much that is irreplaceable for it to ever 'make up' for what I have experienced and what I have lost -- there will forever be my son and daughter missing from our lives, and that is not something fixable.

Until I lost them, the loss and sacrifice that I had experienced along this road deeply affected me, but there was nothing I had given up or lost that was unredeemable or unforgivable with the good fortune of the twins. It's not that I would forget the journey, but I was willing to bargain this for that and this (6 IUIs, 4 IVF transfers, a miscarriage) certainly seemed 'worth it' for what I could get in return (a son and a daughter).

How do I shake this idea of being owed a living child for what I have endured? It is so naive -- and yet a testament to how good and straightforward my life was until infertility -- this belief everything I work hard at will be handed to me. Life doesn't really work like that, I know, but part of me can't shake the idea.

When I had the very early miscarriage that resulted from the IVF cycle we did after losing the twins part of me was like "C'mon -- what did you expect, A? Of course it didn't work out. It never works out for you. Don't you get it by now?" but part of me was suspended in disbelief "How could it not work out -- after all of this don't you just deserve for things to work out?"

Part of me just can't shake the belief in the Very American Happy Ending. Hard work = a great reward. I try to shake it but there is a girl underneath who still believes in it. And yet it is ultimately so damaging to subscribe to that idea when life keeps throwing lemons at you -- if life hands us what we deserve, what does that say about Y and myself?

I still try to bargain all of the time. It is disastrous. I think to myself -- if we couldn't keep Aminadav and Naava, then the second best thing would be to have twins again. A second chance. We deserve to have twins. Twins are so special, I think.

But I know this is totally unrealistic, especially because we plan to only do SET in the future (as we did with our last IVF) since another twin pregnancy is too dangerous for us. Even if we did transfer more than one embryo, realistically our chances of both sticking around are quite low given our IVF track record.

I keep reminding myself that the goal is to have one healthy, living child who I can carry to term. Let's not get ahead of ourselves and get greedy, here, I tell myself. So I guess along side mourning the loss of my particular, beautiful twins,  I also mourn the loss of ever having twins again, which often felt like something special to make up for the lousy hand we had been dealt until then.

I have lost too much to ever think I can have it all again -- the gold has clearly evaded me -- but still there is that stupid quiet voice who says don't you deserve a happy ending? This can't all be for nothing, right? Aren't you owed a living child? Or two.

How about you? Do you struggle with this idea of being owed something or deserving it? Did you feel the gold or silver or even the bronze was taken from you only to unexpectedly get it all back (or not)? If you've had your happy ending, do you rationalize what it took to get there?

searching for a new lightness

I used to smile A LOT. I was always a very smiley person. I also used to be kind of famous for my laughter, which was totally contagious. I can sort of boast about these things because it is so removed from who I am now. My fourth grade teacher overhead me laughing in a restaurant from another table without seeing my face and she instantaneously knew it was me. I was 22 years old. I hadn't seen her in 12 years.

People from all corners of my life always used to comment on my smile and laugh. It was something that stuck with them. My physical chemistry lab instructor approached me one day in the middle of lab, three weeks into the semester, and quipped disappointedly "A., I hear you are so much FUN! You haven't said one fun thing yet!"

In my new life, I never say anything funny, either on purpose or unintentionally, and I don't smile or laugh very much, either. I think I am actually a total downer to be around. I have been thinking lately that I wouldn't want to spend too much time around me. Poor Y.

I have slowly, over a long period of time, turned more and more inward. Most people who have met me in the past few years would probably describe me as awkward, serious, introverted, and well, whiny.

Infertility and loss has made me more empathetic and given me depth and maturity, but those things are much harder to see and appreciate, at least on the surface. Infertility and loss has also made me less vital, less zany, quirky and fun -- a muted, subdued version of myself. And I think I might also be less good-natured and more inclined to hold a grudge, especially if you were a jerk to me when I lost the twins.

More and more turned inward. I think that really accurately describes it. Not self-involved in a narcissistic or conceited sense, but in a darker self-obsessed way. Self-obsessed with my misery, my bad fortune, my inability to understand or answer all of the whys of how this came to be our lot.

I realized recently that I have been complaining a lot about stupid things. Mostly things that are within my control. And I realized this all serves as a cover. I think I have a compulsion to complain because of what really bothers me and how freaking unfair it is, but because it is not socially acceptable to talk about my infertility or my dead babies, I just complain about completely stupid inane stuff instead:

Y hasn't yet taken me to a baseball game this summer, we will probably never go, pity me, etc. etc. Read: My babies died and I am still incredibly pissed and sad and confused about it pity me, etc. etc. It must be so annoying to listen to.

Self-pity. Well, there is not much more to say than that self-pity really blows. No one wants to be proficient in the art of self-pity, but thank goodness, those of us who have gotten really adept at it are usually too self-involved to notice, save for the brief glimpse of self-awareness.

I wonder if I actually talked about the heart of it and acknowledged it outside of this blog like it is a normal topic of conversation: That I have had a really shitty, disastrous go of it conceiving and maintaining a pregnancy. That I had babies but they died and I don't know why things happened the way they did, but that it is really unfair and sucky. That I wish and pray for a living child every day -- whether maybe some of the burden would be relieved and I could find some lightness again and stop acting like a crochety old hag who is so hard done by.

I wish I could act like someone I would actually like to spend time with, but I am not there yet and instead I am too involved in self-pity and self-loathing to have an open heart. How can I find the beauty and the fun in simple things and in my friends and family again? Can I reclaim my smile and my laugh, even if I never feel my old, unhinged lightness again? And can I learn to find a new kind of lightness among the heavy things?

on gravesites, due dates, and the after

Last week was Aminadav and Naava's due date (by 40 week standards, though I knew with twins I was never going to make it that far even under the best of circumstances). I found myself becoming increasingly miserable as the due date approached. It meant another degree of finality was closing in surrounding their death -- almost as if the possibility of their existence slightly existed in some alternate universe until that date came around and slammed shut any possibility. As if they existed in some suspended in-between until now, certainly not here, but the possibility not entirely gone, either. The difference between gone and really gone. I know it's wacky and illogical, but it is the best way that I can describe it.

I felt like we were supposed to do something special to commemorate the day but I wasn't sure what, and so I was left grasping for something that felt very elusive while feeling like I was failing extraordinarily to honor them properly. Should I buy a bundle of sunflowers -- too cheery? Light a candle -- tacky or a little macabre? Nothing was really speaking to me.

The day before I was positively wallowing in dread watching the calendar inch closer and closer to what never was and never will be. In order to cross between the research lab and the main hospital building to go to the coffee shop, I go through the traffic circle entrance of the hospital out back, where parents load their newborns into the car to take home.

That afternoon as I walked into the hospital, there was a family parked in the traffic circle with their two kids and newborn daughter. The father was videotaping the mom carrying her to the car narrating, "And here is her first time in the car! Here she is coming home!" Watching the happy new parents load their newborn into the car struck a raw chord. I couldn't hold back my tears thinking of my poor babies who never got to come home with us. I wasn't jealous, just so sad for Aminadav and Naava and sad for us, especially knowing that the babies coming home healthy now are their compatriots.

One thing that has grated on my conscious constantly is being physically so far away from Aminadav and Naava, with them buried in Israel and us here, and also not having a special place to go to that acknowledges them. One thing I have not written about at all here -- perhaps because until now it was too painful -- is the reality of what happens to babies lost during late pregnancy or shortly after birth in Israel.

While the notion of a proper burial applies, there is a long-held belief that parents of young babies should not participate in the burial and should not know where the baby is buried. Different chevrot kadisha (ritual burial committees) enforce this policy with varying degrees of strictness and leniency, but in the hospital they don't really present the different options to you -- you just sort of get stuck with whatever chevra kadisha serves that particular hospital.

At first, when we signed their bodies away to the chevra kadisha, I was pretty naive and I was just happy that my babies would get a proper burial and not be considered medical waste or some similarly horrible fate. I wasn't thinking about it so clearly at the time, but I didn't realize I might never find out where they are buried.

In the months after we lost Aminadav and Naava I began to wonder more and more where they were buried and began to develop a desire to find out and visit the place. In the process, I learned more & more about what this might entail. Not shockingly, I am not alone, and you can find many similarly-minded posts on the Israeli pregnancy loss forums, of women months and sometimes years later, trying to figure out where their babies are buried.

I learned that oftentimes it is difficult to just get in touch with the correct chevra kadisha and if you do, getting any information at all can be extremely difficult if the person you are in contact with thinks he is protecting you by refusing to give any information. If you are lucky enough to find someone willing to help locate the body, the records are sometimes kept shoddily, and especially if time has elapsed, it is sometimes impossible to find a record of the body. I also found out that the babies are generally buried together in mass graves that are either unmarked or poorly marked.

I know this reality may sound shocking and horrible to many, but this is the situation we are dealt in Israel. Of course now I would like to spread awareness among women in similar circumstances -- that at least there is a choice in which chevra kadisha comes for the body and that some are much more willing to involve the parents in the burial itself and the details surrounding it, but this was not information at hand for us when it was relevant.

I had a very strong desire to find out where Aminadav and Naava were buried before we left for Toronto, but I had an oversimplified fantasy of how we would find out before I started fact-finding and reading the forums. I have a wonderful book on pregnancy loss in Hebrew - כחלֹום יעוף - Like a Fleeting Dream, which to my knowledge is the only Hebrew language book on pregnancy loss written for religious couples. The book has a listing of phone numbers for the chevrot kadisha serving various Israeli hospitals. I thought we would just call the listed number, they would look up our babies in their records, and we would have our answer.

Of course it wasn't simple at all. After a long and convoluted goose chase, Y did succeed in tracking down the cell phone number of the man who took their bodies. However, he only finally succeeded getting his cell phone number the night before we left Israel, which made visiting them impossible. Also, I was really adamant that we try to track down the information before leaving because I figured that as more time passed, the chances of getting the information would just become increasingly slim.

Sure enough, the man remembered our babies as "the twins from Purim" (Purim is the Jewish holiday on which our babies died -- ironically, it is a particularly joyous holiday.) However, he would not agree to tell us where the babies are buried, at least not outright.  Instead, he spoke in riddles, I assume because he had a moral opposition to telling us, but at the same time had some empathy for our situation. We understood from what he told us what city and what cemetery the twins are buried in but not the location of the plot.

For then, that was all the information we had, and it gave me some peace at least knowing the location of the cemetery, but not enough. I thought if I could just go there, maybe I could find a kind person who works there who could tell us where they bury the small babies and since we know they were buried fairly recently, maybe we could deduce which plot.

But we were leaving Israel and it wasn't going to happen this way, at least not maybe until we got back. My babies are in some unmarked mass grave with the chance of ever identifying the spot dwindling with each passing month, I am moving 6000 miles away for the year, and I can't even visit their spot, I thought. Here I go failing them again. And again. First it was my body, now it is practically almost willful.

So on the eve of their due date, here I was more than 6000 miles away, with a vague general idea of where they are, and no way to properly visit or honor them. Thankfully, there is another part of the story:

Two acquaintances back in Jerusalem also lost babies this past year and subsequently became good friends (yes, it is both sad and ridiculous that we only became good friends after losing our babies, because they are two wonderful women). One of them delivered her baby stillborn during her 22nd week of pregnancy at the same hospital in the same room where I delivered Aminadav and Naava about 3 weeks later. Recently, she also got the urge to track down her baby.

She had a similarly difficult time tracking down the information (though it seemed very likely that her baby was in the same cemetery, perhaps even the same plot as the twins since it was at the same hospital only a few weeks apart). Indeed, she eventually traced her baby to the same cemetery. She and my other babylost friend, N, went on a pilgrimage together to the cemetery in an attempt to find the grave. It happened to be on Aminadav and Naava's due date.

Just like in my fantasy,  the staffer, a kind older man (Sephardi and very gentle as decribed by my friends) pointed them in the right direction and led them to three plots with small babies. Based on deductive reasoning, they figured out which of the three plots they think has E's baby, and they think Aminadav and Naava are in the same plot, too. They recited some tehillim (psalms) and placed stones on the grave for E's baby and for Aminadav and Naava, a Jewish tradition that signifies someone has visited the grave. The elderly Sephardi cemetery staffer and my friends recited the names of all of our lost babies and prayed for them together.

So, over the course of their due date, not only was the site of their grave discovered, but Aminadav and Naava got their first visit, not from me directly but from my messengers. Their names were recited, stones were placed, and my sweet babies were remembered by Y and me in Canada, and by two very special friends in Israel, N and E, who I am very blessed to have in my life. E reported that after the visit, she felt "this powerful urge to nap -- not in a tired way, but in a peaceful, relaxed way that I haven't felt in a long time."

I cried all morning, but not the sorrowful tears I cried the night before -- instead, these were more tears of relief. Relief that I felt right was finally done by my babies. Like E, I found some new peace, too. Thank G-d my friends decided to visit the cemetery on their due date. Thank G-d they found the grave. Thank G-d for these small blessings -- they amount to a big deal in my life.

I don't know what I want anymore

I know I haven't been writing much lately. I feel that I  have a lot of negativity and sadness lately and sharing my negative feelings over and over again serves no real purpose. Also, not much to update on in terms of action, since we aren't cycling right now.

I have received some good recommendations for clinics and doctors in Toronto, and I keep saying that I am going to set up some appointments, but something is keeping me from actually doing it. This is a real change for me because until now, I have always been extremely proactive and have often done cycle after cycle in quick succession. My governing philosophy has always been the quicker I can do whatever it takes to have a living child, the better, like ripping off a band-aid. 

Lately, though, I have had strong mixed feelings about how and when I would like to proceed. I really don't have a big problem with the IVF - I feel like I can keep doing it over & over as I have. It can be emotionally and physically exhausting, but it is sort of my norm and it is not disruptive to my normal routine and daily life in the way it was in the beginning. (Actually I will revise that slightly - it makes me feel pretty crappy and less productive in all other aspects of my life but I am used to functioning that way.)

For better or worse, it turns out that you can pretty much get used to IVF as a 'lifestyle' in the same way people with all sorts of chronic diseases get used to whatever repeated invasive treatments they need to keep their condition in check.

What I am having more trouble managing lately is the uncertainty - that I will go to such epic lengths to get pregnant in the first place, but that we still don't know why I need IVF to become pregnant and then the larger issue of whether I can have a healthy pregnancy that I am able to carry past viability. It feels like a cruel science experiment - mostly cruel to the to-be conceived baby - to attempt to carry him/her when my ability to do so, at least in my mind, is so gravely in question.

I am really terrified by the prospect of being pregnant again. It's a shame, because the IVF cycle we did so shortly after losing the twins, I was in a much better mindset to be pregnant again, and then I was of course very briefly pregnant again, but now that's over and I feel like I am in a much worse place than I was then to attempt another pregnancy.

I guess this is all pretty normal - I have heard of others in the babyloss community who are very anxious to become pregnant again immediately after the loss, and then a few months later, once the shock wears off and the real grief work begins, the initial desire turns into fear and reluctance.

I think the main issue here is that I am becoming increasingly ambivalent about exactly what it is that I want. I also feel increasingly tortured about both our losses and our infertility being unexplained and I am not sure exactly what is that I want from that either.

We could do a second round of more extensive testing - many of the autoimmune tests, for instance, but then as I have probably written about before, it is so unclear what to do with that information. If everything comes back negative I guess you get some peace of mind but you still have no answers. If one or two tests yield a positive result, I think there is oftentimes a temptation to attach too much importance to it as "The Answer."

And let's say we proceed with immune testing, for instance, and get some positive results, are we willing to try the therapies for it even though there are no good large-scale clinical studies or really evidence-based medicine to support it, especially considering the potential side effects and the cost? If we aren't willing to attempt immune treatment, there is probably no point in doing the tests.

The other unopened can of worms is doing a laparoscopy to rule in or rule out endometriosis. I do have some of the symptoms but my doctors in Israel felt that once we were doing IVF anyway, it didn't matter whether I do or don't have endo unless it is a major quality of life issue. Their reasoning was that they would recommend IVF in that case anyway and the added value of excisional surgery when doing IVF already is really unclear.

There is actually a series of two articles in this month's Fertility & Sterility about endometriosis and pregnancy outcome - basically saying that  women with endometriosis have greater risk of bleeding during pregnancy due to placentation and implantation issues, greater risk of inflammation to the membranes, and greater risk of pre-term labor and birth. Sound familiar? Of course I was struck with the fleeting (very hypothetical) thought that maybe endo could explain my seemingly unrelated fertility and pregnancy-related fiascos. With that said, the thought of very possibly unnecessary surgery makes me cringe in a major way.

I guess the options at this point are:
1) Set up a few consultation appointments here in TO and see what the docs recommend with an open mind
2) Same as #1 but go in with the intention of proceeding with a new IVF as opposed to doing further testing
3) Same as #1 but explicitly ask for certain additional testing (i.e. lap, immune testing, etc.)
4) Do nothing (though continue to try on our own, for what it is worth) and 'enjoy' my break until we return to Israel next summer and/or I return to Israel to do an embryo transfer.
5) See a counselor with Y and see whether we can get anywhere on the adoption issue (he is very much against it).
6) See a counselor so I can work on figuring out for myself what it is that I want...no other plans in the mean time.
7) Put starting a family on hold indefinitely and contemplate what being childfree would look like.

I'm back

That was quite the unintended lengthy hiatus. Moving across the ocean was a much bigger project that I foresaw. The good news is that after a few weeks at my inlaws we finally moved into our new apartment and we are now more or less settled (we FINALLY got internet set up on Friday). Y started his fellowship and I got my work visa and began work in the new lab.

I am doing okay but life isn't easy -- I still have many hard days, some incredibly hard days, and mostly a lot of in-between days. I wonder whether life would be a little more palatable with some pharmaceutical help, but truthfully, I am so distraught over the weight I haven't loss since giving birth that I am not sure I can handle adding antidepressant weight gain to the mix.

I never stop thinking about Aminadav and Naava. I imagine all the time what life would be like if they were here with us now and what they might look like and be like.

I get teary when I go through old pictures of Y or even myself from when we were both babies and toddlers. We were both really cute little kids -- I think both of us piqued in our looks around 3 or 4 :) I know the twins were really beautiful when they were born and I am sure they would just be so so cute now. Thinking about that never fails to make me cry.

And now here we in July, the month they were due. I suppose at some point the passage of time will make everything easier -- the memories gentler, the reality of life as it is less harsh, but for now I can't help but think time is strengthening the blow.

For some time after they were born but before they were actually due, the reality of our lives and theirs seemed somehow suspended in time, like we existed in some strange in-between where the twins were of course not here with us but they weren't yet supposed to be here with us.

I don't feel like that anymore -- I feel like our universe diverged into two roads, one the promising and happy path we were on and one the sharp and unexpected reality that came to be. I see all the new babies around now and think about how they were Naava and Aminadav's compatriots. How miraculous in some sense that they are here now -- so healthy and robust -- but I guess it is not so shocking after all, I mean isn't that what is supposed to happen? Supposed to happen for whom, though? Surely not for me.

I think that is what is so terrifying about moving forward with attempting to conceive -- the belief that I am somehow cursed, the belief that I am somehow different and every attempt at a live child will end in some permutation of something that is, well, not a live child.

To be fair this line of thinking is clearly not so illogical under my particular circumstances -- 6 IUIs, 5 IVF transfers, 3 pregnancies, 2 beautiful babies that my body wasn't able to support long enough, and 0 living children. It could be so much worse and I know I have many fellow comrades in the pity pool, but it is already an objectively abysmal set of statistics.

Y's grandparents met some woman with allegedly psychic powers who said I would never carry a pregnancy successfully unless I speak with her (she doesn't want money, she just needs to tell me a message). Despite their pleading, I can't bring myself to call her. I just can't. I guess to me it signifies 1) acquiescing that I am cursed 2) puts at least the illusion of personal control to change my situation back in my hands. The latter is a demon I have been working so, so hard to rid myself of -- the notion that any of this is in my control. If I say that yes, I do have control, the avalanche of self-blame that subscribing to this type of logic allows is limitless.

Also, just as a final update to my last saga, I thankfully ended up miscarrying naturally at 5w2d, bringing an uneventful end to my extremely short-lived pregnancy. I don't have any plans on the immediate horizon, but I do hope to set up a consultation at a clinic here in Toronto over the next few weeks. Realistically, it will take a couple of months to get in and then likely another couple months of repeating testing and making arrangements before I cycle again.

In the mean time, we are giving it a go the old-fashioned way…I have never had a naturally conceived pregnancy, but we have all of the right body parts, so I assume it is technically possible.

I would say that the loss of the twins is finally putting some strain on our relationship, not in a serious way, but it is something that wasn't there before that I feel now. Whenever I get really mopey and melancholy and ask Y whether he wishes things were different, he says of course, but he doesn't dwell on what was handed to us vs. what could have been the same way I do.

He even accidentally referred to the twins as "it" once a few weeks ago. He apologized and said he didn't mean it, but I couldn't look at him or speak to him for a little while after that.

When the babies came, we were truly one and together in a way I could never imagine beforehand nor articulate in a way that would do it justice now -- I am not big on soul-talk, but the best I can describe it is that our souls met somewhere above us and became one. It was a level of emotional intimacy that I had never experienced before nor will probably ever experience again.

Of course the flip side of such extreme intimacy is that it unsustainable and can pretty much only go in one direction after that. So I guess there is a bit of a rift now -- a sense that I still have so much intense sadness that can be overwhelming for Y. And whenever I feel bitterness I can't help but think it bad or dirty to feel that way, even though I know it is pretty normal. I know Y doesn't share the intensity of longing (not jealousy, I don't begrudge others for their good fortune) that I sometimes feel for what other people have.

The secondary issue is that I am feeling increasingly ready to accept adoption as a way of moving forward. This is in an abstract sense, because there are so many logistical issues that we would need to deal with. I would love to be pregnant again but having a child to love and to raise is more important to me than being pregnant again (of course with no guarantee that any pregnancy will result in a healthy living child).

Y doesn't feel even remotely similarly about adoption. Having a biological connection to the child is paramount to him -- he says he doesn't see what the point is if the child isn't his own. There is pretty much nothing to talk about there. There is no evidence to suggest that donor egg would be particularly helpful to us and while surrogacy may be helpful, with such a high price tag and in the absence of any super compelling reason why its our only option, that is off the table, too. In short, I think we will just continue to power on as we have before.

I just miss my sweet twins so so very much.

missing parts

Last week I had my last painting class of the year at the museum. Painting is something I do for fun and just for myself -- I am not very good at it. Back in February, right before my first hospitalization, we were working on a self-portrait project. The assignment was to take a xeroxed photograph of our faces and then break it into 25 parts, painting each panel separately and then finally pasting it all together to see the whole face.

The idea is to see each aspect of the face abstractly - in other words not to see an eye as an eye, for example, but just a random collection of darks and lights with a particular contour. It was a 3- or 4-week long project, and half-way through, I had the partial placental abruption of Aminadav's placenta.

When I came back to class after the twins had been born and died, I had a vague recollection that I had left the self-portrait project incomplete but I had no desire to go back to it. It just served as another reminder of where I was, what I was doing, and what my happiness and anticipation was like in the weeks and days preceding the darkness that was to come.

For our last class, we were supposed to discuss 3 or 4 pieces that we felt were most representative of our work and our progress throughout the year. My half-complete tiled self-portrait was long forgotten by me, but my teacher apparently found it at the bottom of a drawer filled with projects from the winter, and when I walked into the classroom, I was met with the half-complete painting tacked on the wall.

I really didn't want to spend any time looking at the self-portrait, which I had not seen nor really thought about since I was pregnant with the twins. I could not, however, ignore the obvious irony of my own missing parts in the painting.

In the other painting, something other than my xeroxed face was suddenly and unexpectedly left wholly incomplete.

right where i am: 2 months and 3 weeks

This entry is for Angie's annual Right Where I Am project where she asks baby loss bloggers to describe where they are in their grief. Thanks, Angie, for both facilitating this project and the prompt -- I know it certainly helped me and took me to an unexpected place.

Today we are packing up our apartment in Jerusalem into boxes that will be put into storage for a year. In about 2 weeks, we will move to Toronto for Y to complete his fellowship. Y's parents are in town and they are helping us pack. Both of them (and Y) are much better at packing than I am. They are doing us a big favor by spending their vacation time in Israel helping us to pack, especially because I am so spatially challenged, easily distracted, and also inefficient.

Y's mom really wants me to acknowledge what a good job she is doing and how much she has helped us. But my stubborn 5-year-old version of myself is at war -- I will not thank her or acknowledge her help. Instead I will mope aimlessly in the corner. Both of my feet are planted firmly on the ground and I push hard against Y, against his parents who are helping to facilitate this move. Enablers. Co-conspirators.

I offer Y's mom a slice of leftover pizza, ask her if she'd like me to heat it up. She'll have it cold, she says. Like her son, she is ok with eating pizza cold. I marvel over how this is done, I tell her. Personally, I think cold, congealed pizza is disgusting. "I eat pizza cold because I am a mother," she tells me. Is this lady for real? Of course the only appropriate response is "Oh, well, mothers of dead babies like their pizza warm."

But instead I just bite my lip and stutter "I really don't think that has anything at all to do with being a mom." I hate myself for not saying what I want to say, but I'd hate myself for saying it, too. I hate myself for all that is left unsaid between us -- for the dirty feeling I get each time I realize that she doesn't consider my children real babies nor me a mother, not even a sort of in-between half-mother. One day I will tell her everything that she does not want to know.

I will tell her the truth, that these were her grandchildren, too. That Aminadav had Y's big head and that Naava was born alive. That they were not some sort of sad, macerated, bloody miscarriage mess. In fact, there was nothing sad about them except for their death. That these were real babies. Real, beautiful babies. Perfectly formed, just too small.

But for today I will not thank her for packing up my apartment and I do not budge. I do not want to budge. I don't kick or scream or make noise, I just give in to inertia and refuse to move. Actually, it is less of a refusal, more of a giving in. I am paralyzed, my feet planted firmly into the floor, through the floor, into the ground. Doesn't anyone understand? I have roots here.

Roots -- isn't that what I sought in this land, this scorching dry holy land that sucks you in until you belong to it more than it belongs to you? I came here, to Israel, as a new immigrant 6 years ago, seeking out the metaphorical roots. But now I belong to the land -- rooted.

These are the strongest, most real roots; so solid I could not extricate myself from them with any amount of effort or denial. Because here comes the simple truth: my babies are in the ground here. They are part of it and belong to it and I am part of them and so we all belong to this land.

Leaving this place, packing these boxes with our books and pots and pans, is leaving my children behind. So on this day, 2 months and 3 weeks since Aminadav and Naava came and went and returned to the land, my land, I hope you can understand why I can't interrupt my moping to thank anyone for enabling me to leave this place.

When they were gone it was so easy to go back to the life we had before. Except for their absence everything about our lives was identical -- a perfect replica of everything we had left behind. I went back to the lab, to a life of pipetting and aliquoting and enumerating. Y went back to the operating room, to the familiar routines of cutting and splicing and suturing back up. We both found a lot of comfort in the oldness and predictability of our lives from before. I returned to work full-time within a week of their deaths.

But here's the thing: I never imagined the future without the twins. I never imagined Toronto without the twins. While it was easy to slip back into the past without the twins, when it comes to the future I am still stuck on the future of my parallel universe -- our future with arms more than full. In the last few weeks, I have been preoccupied by the thought of how if they were to come now they would most likely be here safe and healthy.

I still wonder what it is like to have arms that are more than full.

Until now, until our living room was filled with bubble wrap and packing tape and IV boxes full of kitchen utensils I conveniently blocked out the part when everything changes and the twins aren't here, the moment when the future arrives and the twins aren't coming with us. This is right where I am: 2 months and 3 weeks later.