Month: August 2016

Guest Post: Gabriella’s Story

I am honoured to share the following guest post by fellow loss mama Shanecia Cadena. Any comments or questions for the author can be sent to Cadenashanecia@gmail.com.

You never truly know how precious life is until a horrible tragedy unfolds before your eyes.

June 30, 2016 began as a normal day. I was 22 weeks along in my pregnancy with my daughter, Gabriella. In the morning I felt my baby girl moving around and kicking as per usual. That afternoon I had a routine prenatal checkup, which I hoped would confirm that she was still growing healthy and strong. However, little did I know that this appointment would change my life forever.

My obstetrician started off by asking the usual questions. She discussed Gabriella’s measurements, and then we reached the part that I always anticipated yet also silently feared: Searching for her heartbeat. At my previous appointments finding her heartbeat with the Doppler had been quick and easy. But not this time. It took longer than expected and I immediately knew something was wrong when I saw the worried expression on the doctor’s face.

Soon she rolled in the ultrasound monitor to see if it could detect what the Doppler had been unable to find. When this didn’t work, she left to ask the head obstetrician for help. Shaking and scared, I began crying and praying that this was just a glitch, and perhaps my daughter was simply being stubborn. The new doctor came in shortly afterward and performed another ultrasound. After what seemed like a lifetime, he began explaining what he found on the screen. He said that Gabriella had a lot of fluid and swelling around her head. He then confirmed that she had passed.

In that moment my worst fears had come true. I was so heartbroken. I was in shock. I was numb. It was the worst feeling I could possibly imagine.

Crying uncontrollably, I called my husband to tell him the devastating news. The doctor had indicated that I could wait and let my body go into labour on its own, or I could be induced later that day. I couldn’t hold off any longer; I was admitted to labour and delivery soon after. As they wheeled me upstairs to my room, we passed by walls adorned with beautiful newborn baby pictures. It broke my heart to know that Gabriella’s photo would never be displayed and celebrated in this way. So many thoughts were running through my head: Why was this happening to us? What did we do to deserve this? What did I do wrong?

Hours passed before I was given medicine to start the long induction process. I kept asking myself, “Can I do this? Am I strong enough to handle this?” I could feel my stomach deflating like a beach ball. Time continued to creep by and at 7pm I finally started pushing. It was the worst physical pain I have ever experienced, although it did not compare to the heartbreak of losing my baby. She was born still on July 1 at 7:13pm. We were given a day to hold her and spend time with her before she was sent to the funeral home.

The doctor would later inform us that Gabriella was diagnosed with Turner Syndrome, which only occurs in female babies. She had fetal hydrops and cystic hygroma, all of which translated to a 1% chance of survival. However, it took about six weeks for us to receive the results of the biopsy that had been performed on her skin and umbilical cord, at which point we were told that the tests were inconclusive. It wasn’t protocol for the doctor’s office to make sure the cells were fresh, and the lab did not run the tests within 48 hours like it was supposed to. It kills me that we will never know her cause of death for certain. Even though the doctors are confident in their diagnosis, I will always wonder.

It has been just over a month since we lost our baby girl. We go about our daily activities and routines, but each day remains a struggle for me. Not a day goes by where I don’t think about her or picture her precious face here with our family. While we are not completely healed, it is comforting to know she’s at peace and watching over me, her daddy, and her big brother. As much as I want to forget about what happened, I can’t. Our family will always love, cherish, and miss our sweet Gabriella.

Gabriella

 

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Trying Again

During the earliest days of my grief journey there were moments when I had all but convinced myself that life would be okay again as soon as I had another baby in my arms. I had visions of myself surrounded by family and friends in the same hospital room where I stayed with Leah, only this time there was a purely celebratory atmosphere as we passed the new baby from one pair of loving arms to the next with no thought of saying “goodbye” in sight. I was quite taken aback by how quickly the urge to conceive again overcame me. I physically yearned to feel soft newborn skin against my chest, and my arms literally ached from their crushing emptiness.

I believe this irrepressible urge is biologically instinctive in the most profound sense. I had given birth to Leah and bonded with her. For 33 hours I held her, smelled her, fed her, and took care of her after carrying her for nine months. Suddenly I found myself at home with no baby, and it seemed like my body was not able to comprehend or accept her sudden, unnatural absence. During those early days my need for her was deep and primal; I spent countless hours curled into the fetal position on by bed, clutching my soft postpartum belly and whimpering her name like the wounded animal that I was.

On another level, this urge is also likely motivated by the fact that I am a borderline-obsessive planner, which is common among anxious types like myself. Even though my pregnancy with Leah was a surprise, I maintained my locus of control by planning around her unexpected presence in my life. For the next nine months each decision, whether it be about work and finances or simply what to eat for dinner that day, was made with her in mind. My life was still moving forward with the understanding that Leah would be a fundamental part of my present and my future.

But when she exited my life just as abruptly as she had entered it, my world came to a screeching halt. Despite my anxious propensity to hope for the best but expect the worst during my pregnancy, I could not possibly prepare myself for my daughter’s death. Suddenly I was stagnant; I could not turn back the hands of time and get her back, but I also could not move forward. I had planned for a baby. I had a baby. I had a bedroom full of baby gear and an entire summer ahead of me during which I had no plans beyond caring for my daughter. It didn’t take long for my anxiety to begin shouting its directives from the depths of my mind, desperate to regain some semblance of control:

“Have another baby!”

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Image credit via Keep Calm And Posters

Of course! It was a brilliant plan. My OBGYN had given me the go-ahead to conceive as soon as my postpartum bleeding ended. This meant that if my menstrual cycles resumed by the end of the summer, I could theoretically be pregnant again in the fall and be holding Leah’s brother or sister this time next year. Certainly I could hold out for one more year and everything would be back on track. I clung to this assurance for a brief period of time before my anxiety intervened (again) and began generously offering numerous “what if” scenarios to consider:

What if you cannot conceive now that you will be actively trying? What if you experience Unexplained Secondary Infertility? What if you get pregnant but you have a miscarriage? And then another miscarriage? And then another? What if you experience another Fetomaternal Hemorrhage in the second or third trimester? What if your baby is stillborn? What if the baby is born with unanticipated complications and dies in the hospital? What if your baby seems okay in the hospital but dies of SIDS or illness at home?

And on and on it goes. Yet every now and then I am able to put my fear of future losses aside and imagine a positive outcome. I consider the absolute best case scenario that could unfold from here: I get pregnant soon after I start trying. I have a healthy, complication-free pregnancy. I hear a strong cry from Leah’s brother or sister after they are birthed by repeat cesarean section. I find myself at home a year from now, doing everything I imagined I would be doing with Leah, but with a new baby instead.

I allow myself to imagine these positive outcomes from time to time, but inevitably the tears still flow. A more nuanced clarity has emerged since my first days of grieving and I now understand that having another baby will not mend the loss wound that Leah has left in my life. Yes, perhaps I could get pregnant again quickly, but Leah won’t be the one performing acrobatics on the ultrasound screen during my prenatal appointments. Maybe I could have a healthy baby that makes it to the second trimester, but it won’t be Leah’s kicks that I feel against my ribs each day. Perhaps another baby could make it to the end without experiencing FMH or a different complication at the eleventh hour, but it won’t be Leah who is passed from one family member to the next in a hospital room where joy is not mitigated by sadness.

With each passing day I become more painfully aware that there is no simple way forward from here. I know that having another baby will complicate my ongoing grief journey, rather than alleviate it. Having another baby will not give Leah back the life she never got to live, nor will it erase the struggles she endured. Still, these days the most comforting thing I can imagine is sitting with another wee daughter or son and telling them all about their beautiful, strong big sister. It allows me to smile every now and again when I am tempted to shrink away from the bittersweet road that lies before me. It does not take the pain away, but it does allow me to hope.

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My New Normal

There are many things in this life that I’m prepared to do without.

When my husband and I got married six years ago in a little wedding chapel, I was 23 years old. In strict violation of our culture’s script for middle-class adulthood, we did not enter this covenant after establishing our careers and purchasing a home. Instead we moved into the cheapest dog-friendly basement apartment we could find in a Toronto neighbourhood that we loved, and we stayed there for four years despite the centipedes and bi-yearly kitchen floods.

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Likewise, when we decided to pursue our PhD degrees, we knew it was unlikely that a lucrative outcome would be waiting for us when we marched out of our dissertation defenses as victorious new “Doctors.” Rather than advancing in pragmatic careers, we have been doing unpaid research and writing while living off meager teaching stipends. Instead of purchasing a home and planting roots, we have moved from one thrifty apartment to the next while maintaining a minimalist lifestyle.

And you know what? I wouldn’t change a minute of it. I’ve learned so much about myself, chiefly what I need and what I don’t need to be happy. I know that I don’t need a large home, luxurious vacations, or a prestigious job to feel complete. I also don’t need the approval of anyone who values me for what I do or what I have, as opposed to who I am.

But I do need thought-provoking books to read, a forum to foster my love for writing, and quiet moments to be still and nourish my spirit. I need sunny walks in the park with my husband while we discuss the vicissitudes of life. I need laughter-filled visits with my closest friends and road trips to see my family.

And up until October 2015, I thought that was all I needed. But Leah changed all that. Before my pregnancy, I had a vague idea that I would probably be a mother someday, but having children seemed like a far off abstraction that I really didn’t give much thought to. Yet as soon as I discovered I was pregnant, I felt a visceral need for this new little person, even though I had not met her yet. Suddenly my ability to lead a full, happy life hinged on this tiny girl making it into the world.

So where does that leave me now that she’s gone?

I thoroughly believe that human nature is defined by our innate need to forge meaningful connections with each other. At the end of the day, all that matters in this life are the connections we make. Similarly, it is often said that grief is the price we pay for love. Life is not worth living without love, yet the finite nature of life on this earth means that we cannot know love without also knowing pain. Even the strongest connections that last until death will be severed one day, after which our love lives on with no earthly outlet.

These are the things I consider as I trudge ahead and attempt to forge my new normal. I know that the pain and emptiness I now feel are the price I have to pay for loving and losing my daughter. I also know that if I could somehow go back in time, knowing how soon my earthly connection to Leah would be severed, I would not “undo” my pregnancy. While Leah’s absence now leaves a gaping hole in my life, it is still richer because I am her mother. It seems my new normal must inevitably be a life that will always feel less full and less bright. It is worth it, however, for having known Leah during the brief moment in time that she was here.

But it still hurts like hell.

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Unapologetic Grief

As mentioned previously, our cultural practices and understandings of grief often do little to help the bereaved. We gather together for contrived rituals of common mourning and remembrance, after which those with marginal relationships to the deceased may continue on in their lives with relative ease. This in itself is not problematic; rather, the issue arises when everyone expects those who are most intimately affected by the loss to “move on” in a similar way.

Likewise, we say curious things to those who are in  mourning. We tell the bereaved how “strong” and “brave” they are and speak highly of those who are seemingly able to resolve their grief quickly and integrate back into “normal” day to day life. We say how “well” they are coping when they are back to presenting as their “old selves” within a given time frame.

But let’s be honest. Do we really believe that the bereaved continue on in this way when they are at home, hidden from polite society, with only their emotions and the absence of their lost loved one to contend with? It seems that the compliments we pay to those who “cope well” after loss are a hollow endorsement for maintaining our cultural commitment to the privatization of grief. They reflect the fact that many of us are deeply uncomfortable with the raw emotions that accompany loss.

When we expect the bereaved to “move on” and be back to their “old selves” by a particular time, we are asking them to suppress their emotions and pretend like the person they loved and lost never existed. To grieve authentically and without apology is not brave or strong, just as it is not a sign of weakness or pathology. Rather, it is an act which allows us to be fundamentally human in coping with our losses. Privatizing grief does nothing to help the bereaved, who desperately need to forge connections with others more so than ever before. Rather, it is something that protects the rest of us from the potentially uncomfortable act of truly connecting and empathizing with the person in mourning.

Image credit via UrnsOnline

My experience indicates that this propensity to privatize grief is exacerbated during instances of pregnancy and infant loss. We often feel like we should cloak these losses in silence and shame, perpetuating the stigma that already surrounds them. Case in point: Before my pregnancy with Leah I had taken a multi-year hiatus from all social media platforms. Several weeks before my due date, I decided to re-join Facebook so that I could keep family and friends abreast of Leah’s milestones and connect with other mothers. When I returned home from the hospital without my baby girl, one of my first thoughts was “Great. I went back on Facebook to let everyone know about my baby, and now she’s gone.” My initial instinct was to deactivate my account and carry this loss in silence and shame.

Luckily it did not take long for me to realize the absurdity of this notion. Leah’s death was not a personal failure or a momentary blip in my life story to be tucked away. I wanted to shout her name from the rooftops and let everyone know how beautiful and strong she was. I was not ashamed of loving my daughter or bringing her into the world, so why would I want to hide this reality? Refusing to speak about Leah does not alleviate my sadness any more than it changes the fact that she existed and left this life far too soon.  And so, rather than privatize my grief, I decided to share it authentically and unapologetically with anyone who would listen, just as I continue to do on this blog.

I created Loss Mama for several reasons. I have needed to engage with my grieving emotions in a genuine and productive way, and for me writing is an important part of that process. Likewise, I wanted to honour Leah’s life by sharing her story with everyone I could. But I also wanted to create a space where other loss mamas can pay tribute to their children by grieving for them openly and without apology. And so I am delighted to share that, now and again, this blog will feature guest posts from fellow loss mamas who have generously agreed to share their journeys with me.

Stay tuned.

 

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Guilt

As mentioned in previous posts, my grief journey since Leah’s death has been tumultuous at best and torturous at worst. Shock. Denial. Sadness. Anger. Rinse, repeat. Indeed, throughout the past nine weeks I have been confronted by the darkest elements of my own psyche that stand poised to swallow “old Vanessa” up entirely, never to return again. Yet the very worst moments, those where the pain becomes so unbearable that I can see madness beckoning me into its abyss with outstretched arms, have been triggered by the emotion that all loss mamas seemingly know too well.

The guilt.

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Image source via Quotes Gram

And why wouldn’t we feel it? Our unborn children rely on our bodies to nourish them and keep them safe. Medical wisdom indicates that our bodies are designed to conceive, carry, and give birth to babies. So what does it mean when something goes wrong during this seemingly natural process?

Often times it leaves us feeling like our bodies are defective. Like we are defective. Suddenly we feel betrayed by our bodies for failing to perform the procreative function that so many other women seem to do with relative ease. Yet there’s more to it than that.

Often times this dreadful bodily alienation is compounded by our guilt for not being able to prevent our child’s death. In the face of tragedy it is human nature to want to direct blame at someone or something, and too often we turn this blame inward, resulting in a relentless barrage of “If only’s”:

If only I had gone to the doctor sooner.

If only I had taken better care of myself.

If only I had been more attuned to my baby’s movements.

If only I hadn’t exerted myself.

If only I had been more careful.

Enter Loss Mama Guilt, Phase 1:

On the second morning of my hospital stay, the Maternal-Fetal Medicine specialist overseeing my care made a special trip to my room. She sat with me and assured me that there was literally nothing that I did to cause Leah’s Fetomaternal Hemorrhage, just as there was nothing else that I could have done to save her. It was the membrane in her umbilical cord that had ruptured, and she had already been bleeding out into my body for days by the time her movements decreased. I try to cling to this assuring encounter when I find myself sinking into a pit of self-blame, at which point my loss mama guilt inevitably reminds me:

You could have gone to the hospital sooner. You sensed that something wasn’t right. You should have gone right away instead of waiting around to do a kick count. If you had just gone in immediately, Leah might be alive. She may not have had a perfect life, but she may have survived and you would have loved her regardless of her condition. While we’re at it, why didn’t you just go to the hospital and demand to be induced on your due date? Because you were afraid that the induction would be painful and you were so concerned about having a “natural” childbirth? Look where that got you. If you had given birth when you were supposed to, Leah would be alive.  

Now, logically we loss mamas know that we did all we could to protect our children. We know that if there was any way of foreseeing and preventing our babies’ deaths, we would have done everything and more to keep their little hearts beating. We know that we didn’t choose their deaths.

Except in cases where we did. Like mine.

Enter Loss Mama Guilt, Phase 2:

Choosing to remove Leah’s life supports mere hours after her birth was undoubtedly the most difficult and heart-wrenching decision I have ever made, and I can only hope and pray that I will never have to face such a devastating choice again. Granted I have been repeatedly assured by my caregivers that it was never really my choice to make. An entire team of specialists had been working on Leah and they would not have presented the option of stopping treatment if there was any glimmer of hope for her recovery. I often remind myself of this, to which my loss mama guilt responds without fail:

What if the doctors were wrong? Doctors get it wrong every day. You’re her mother; it’s your job to protect her. You should have asked more questions. You could have been more assertive. How could you let them give up on her so soon? How could you give up on her so soon? You were all she had in this world. She fought for 33 hours to stay alive for you; why didn’t you fight harder for her?

I wish I could say that my logic has prevailed against these internal accusations. The truth is that I, and presumably every other parent who has been faced with this life-shattering decision, will probably always be haunted by the “what if’s” and “if only’s” that can never be completely resolved.

What I do know is that I would have been willing to leave this life if it meant that Leah would have been able to stay. I also know that I would have cherished her for the rest of my life in any condition if she had survived. I cling hard and fast to these truths in my darkest hours and I hope that, someday soon, they might be enough to keep the guilt at bay.

 

 

Fetomaternal Hemorrhage Can Go to Hell Part 2: Innocence Lost

Many loss mamas talk about losing their pregnancy innocence after experiencing miscarriage, stillbirth, or infant death. Suddenly they become acutely aware that two pink lines on a home pregnancy test does not guarantee the safe arrival of a healthy baby nine months later. While pregnant with Leah, my anxiety prevented me from enjoying this optimistic outlook (which the jaded among us might call naivete, given that 1 in 4 women will experience pregnancy or infant loss in their lifetime). I always consoled myself that, once Leah arrived safe and healthy in my arms, I would be able to enjoy subsequent pregnancies because I would have a solid life precedent to confirm that my body is capable of carrying a healthy, full term baby.

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Image credit: Charles M. Schulz

But Fetomaternal Hemorrhage changed all that. Not only did FMH (also called Fetal-Maternal Haemorrhage and Fetomaternal Transfusion) snatch my baby girl’s life away, but it also stole my ability to ever feel “safe” in subsequent pregnancies.

Long story short, FMH has all the trappings of an anxious-control-freak-expectant-mother’s worst nightmare. Here’s why:

  1. A massive FMH is incredibly rare. Like, 1 in 5000 pregnancies rare. Many doctors have never heard of it. The specialist who oversaw Leah’s palliative care had only ever seen one other case of it in his 30 year medical career. Which means that…
  2. …there is very little research on potential risk factors, how to detect it, and what can be done to prevent it.
  3. In most cases, it has no known cause. Trauma to the abdomen can be a factor, as can placental abruption and particular blood clotting diseases. But for the most part, it happens in perfectly healthy and complication-free pregnancies.
  4. Usually, the baby’s decreased movements are the only sign that anything is wrong, at which point the damage may already be irreparable. FMH cannot be detected through ultrasounds or routine pregnancy health tests.
  5. FMH happens most frequently to full-term babies. This means that it is more likely to strike pregnant women who are well into the theoretical “safe zone.” Yet…
  6.  …it can also happen in the second trimester, meaning it is the equivalent of a biological terrorist that can strike without warning at any time, but most likely when it’s least expected.
  7. And perhaps worst of all, not all cases of FMH are fatal. If the stars align and the baby happens to be delivered and treated in the nick of time, the lucky ones may grow and thrive with minor (if any) health complications or cognitive delays. Since many cases have a more tragic ending, women like myself who lose their babies are condemned to a life of guilt and self-blame for not being able to save them.

Many loss mamas feel rightfully relieved in subsequent pregnancies when they surpass particular milestones. Women who experience early miscarriages may feel safe when they reach the second trimester. Women who received heartbreaking news at their second trimester anatomy scans may feel at ease when their next baby gets a clean bill of health.

But where does that leave women whose first pregnancies result in a full term loss, whether it be to FMH or other unpreventable complications?

I have been told that my chance of experiencing another FMH in subsequent pregnancies is slightly higher now that I have experienced it once, but overall it is very unlikely to occur again. It would be the equivalent of being in a freak highway accident two times over, or winning the world’s worst lottery twice. Unfortunately now that I have been “the statistic” once, I doubt my anxiety will ever let me believe that I can escape a similar tragedy in the future.

In short, Fetomaternal Hemorrhage can go to hell.

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Fetomaternal Hemorrhage Can Go to Hell Part 1: Anticipating the Worst

One of the worst things that can happen to someone with Generalized Anxiety Disorder is to see the worst case scenarios they concoct in their minds suddenly become their reality. It’s much easier to talk myself out of an anxiety spiral when I know there is no logical reason or life precedent to justify my catastrophizing. Throw a cocktail of volatile pregnancy hormones into the mix, and suddenly my default anxiety mode borders on explosive.

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Image credit via Captain Awkward

Physically speaking, my pregnancy with Leah was on the “easy” end of the spectrum. My first trimester nausea mainly consisted of food aversions, I felt fairly energetic all the way through, and my recurrent acid reflux could be easily remedied by chalky antacid tablets. But the anxiety. I felt one whopping day of pregnancy bliss before the worry kicked in. I knew immediately that I loved the little life that was growing inside me, so of course I immediately began worrying about losing it.

To say that researching everything that can go wrong during pregnancy became my hobby for the next nine months would be an understatement. It was more like a full time job. Ectopic pregnancies. Missed miscarriages. Cervical incompetence. Placental abruptions. Amniotic fluid leaks. Umbilical cord accidents. I knew it all, and I also knew that if these things happened to pregnant women every day somewhere in the world, they could also happen to me.

I did my best to proceed throughout the pregnancy with cautious optimism. After all, as a friend had sardonically remarked, I was the “perfect human incubator”: At 29 I was a young(ish) mother in my ideal weight range with no underlying health issues or harmful addictions. I bought books on using mindfulness techniques to mitigate anxiety and tried my best to take my pregnancy one day at a time. Still, each time I felt the cold touch of a Doppler or ultrasound machine on my swollen belly, I held my breath and silently braced myself for the worst.

I did not allow myself to relax in my pregnancy until I was 36 weeks along. And when I heard my anxiety beckon me back to its side, I would assure myself that, finally, I was statistically more likely to bring a healthy baby home at this point than not.

So I finally let go of the fear. I finally allowed myself to embrace the pregnancy bliss that I had heard other women talk about but never dared allow myself to feel. I began speaking about Leah in terms of “when’s” and not “if’s.” I cooked big batches of meals to freeze and made a Netflix playlist to keep me occupied during late night feedings. I washed baby clothes, installed the car seat, and packed my hospital bag. I was ecstatic. I was ready. 

And then it all went to hell.

 

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Breaking the Silence

Much has been written on the unhelpful banalities that people often say when they are face-to-face with the newly bereaved. At a loss for words and knowing deep down that we cannot do or say anything to take the pain away, we find ourselves resorting to tired cliches that, more often than not, bring little comfort to the person in mourning:

“They are in a better place.”

“Everything happens for a reason.”

“It was their time.”

“Life must go on.”

Such sentiments ring all the more hollow when a baby has been lost, whether it be through miscarriage, stillbirth, or infant death. When these tragedies strike, the following platitudes are frequently thrown into the mix:

“They were too beautiful for this earth.”

“God needed another angel.”

“You can always have more children.”

I count myself fortunate that the closest people in my life have been thoughtful enough not to hurl such cliches at me following Leah’s death. And even when people’s condolences have been less than astute, I can recognize and appreciate their good intentions.

However, there is one general reaction that I have encountered that cuts me deeply. It is evident in the messages that aren’t returned, the phone calls that aren’t made, and the “How are you’s?” and “I’m sorry’s” that aren’t said.

The silence.

I get it. Humans are notoriously bad at confronting death and bereavement. It reminds us of all the things we’d rather not think about, like our own mortality, how little control we have over our lives, and the terrifying reality that none of us is immune to tragedy. Most of all, though, we know that there is nothing we can say to truly make things better for the bereaved, and for fear of saying the wrong thing and doing more harm than good, we opt to say nothing at all.

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Image credit via WeKnowMemes

Several weeks after Leah’s death I attended a social function that I had been bracing myself for. I knew the day would be triggering because I had long assumed that my baby girl would accompany me (I even had a dress picked out for her to wear for the occasion), and on top of that I feared how the other attendees might react to me. Many of them had seen me very pregnant only a few weeks prior and knew about my loss. I wondered how these friends and acquaintances would handle my presence, and I was prepared for various possibilities. However, I wasn’t prepared for the deafening silence.

Suddenly people who had laughed with me and asked me questions about my pregnancy weeks before could not bring themselves to look me in the eye. It wasn’t until I took it upon myself to initiate conversations with them that anyone spoke to me, and even then the “How are you doing’s?” and “I’m sorry for your loss’s” never came. I have run into this situation repeatedly since then, and each time I am taken aback by the absurdity of pushing reality aside and acting “normal” to protect others from momentary discomfort.

So let’s be real. My daughter is dead. I’m not okay. You know I’m not okay. I assume that most loss mamas would agree that we don’t expect you to say all the right things to make us feel better; nobody can do that. In the same way, we don’t expect every social interaction to center around us and our losses. All we really want is some sort of acknowledgement. It can be as subtle as letting us know you’ve been thinking about us and asking us how we are.

Here’s the thing. Every loss mama I’ve encountered wants to talk about the child(ren) they lost. Indeed, we need to. In many cases of miscarriage, stillbirth, and infant death, the parents are the only ones who saw and touched their babies. In the case of early losses, there may be no tangible evidence aside from a positive pregnancy test that the baby existed at all. Often there are no shared memories or experiences to commiserate over with others, and the thought that our children will be forgotten by the world is nearly as heartbreaking as their daily absence from our families.

So don’t worry about saying the “right thing.” Instead, create space for us to talk about our losses. Open up the conversation by simply asking us how we are, and we’ll take it from there. Don’t be afraid to break the silence by saying our children’s names and asking us questions about them. Even if it brings the occasional tear to our eyes, knowing that someone else holds our children in their mind and heart makes all the difference in the world.

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Triggers

It’s safe to say that I have never felt less in control of myself or my emotions as I have these past eight weeks. As I go about my days still fully immersed in the grieving process, it is difficult to predict what will catapult me into a rage or engulf me in a wave of tears. Each day is its own beast to contend with. Until experiencing the physical trauma of giving birth by cesarean section, only to watch Leah die after struggling to cling to life, I never could have understood the delicate nature of navigating the everyday world with such fresh emotional and psychological wounds.

Many loss mamas have commented that, following their experience of miscarriage, stillbirth, or infant death, suddenly it seems like there are blissful pregnant women and healthy babies everywhere, and each encounter with them peels a healing layer away from the loss wound, exposing it for all to see.

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Image source via Quick Meme

This has not really been the case for me, at least not yet. Granted I got off easy in this respect because there were no other women in my immediate circle of family and friends who had newborn babies or were pregnant at the same time as me. The things that were and remain most triggering for me bring me back to the final weeks of my pregnancy when I was happily going about my day to day routine, blissfully anticipating Leah’s imminent arrival. It rips my heart to shreds to think about that time now, knowing that I will never experience that pure, unadulterated joy again. In the same way, while I believed those days marked the beginning of my new life with Leah, it now pains me to think that they actually marked the beginning of the end of our time together.

Throughout the past eight weeks I have found myself triggered at one point or another by the following otherwise mundane activities:

  1. Making breakfast.
  2. Drinking raspberry leaf tea. As per my midwife’s advice I had been drinking 3-4 cups each day during my final weeks of pregnancy, and I continued to drink it after Leah’s birth to help with uterine healing.
  3. Throwing out my last empty box of raspberry leaf tea. In a strange away, it felt like I was losing one of the few remaining links to my happy pregnant days.
  4. Watching anything on Netflix.
  5. Reading the Scary Mommy confessional.
  6. Walking in the general direction of my midwife’s office.
  7. Going to the grocery store.
  8. Reading or watching anything related to the Brexit referendum. My husband and I were mildly obsessed with this historic event, and since the June 23 vote day was shortly after Leah’s due date, I had long imagined having her with me when it happened. When the big day came, I couldn’t bring myself to watch the coverage.
  9. Reading or watching anything related to the upcoming 2016 U.S. election, for the same reasons cited above.
  10. Eating grapes.
  11. Eating watermelon.
  12. Listening to any of the albums that I purchased during my pregnancy, and especially this song and this song.
  13. Watching The Americans, as I had purchased the third season on DVD with the specific intention of viewing it while doing late night feedings.
  14. Walking my dog to the park.
  15. Eating the freezer meals I had prepared shortly before my due date.

And of course, there are the more obvious triggers that relate directly to Leah herself. The jug of special baby-friendly laundry detergent I had purchased to wash her clothes. The closet full of diapers and onesies that I still cannot bring myself to open. The car seat and bassinet that had been set up weeks in advance of my due date but were never used. The photos and video clips of Leah that, depending on the moment, may fill my heart with joy and gratitude, cause me to break into unrelenting sobs, or send me into a fit of rage for their inability to fully replicate the living, breathing girl I long to hold.

Most days the list of potential triggers seems endless. In the meantime taking life day by day continues to be challenging. And when that is too much, I allow myself to take it moment by moment, breath by breath.

 

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The Aftermath

Shortly after Leah’s death, I began regularly conversing with a fellow loss mama. After sharing with her how mystified I felt by my grieving process, she sent me this image:

grief stages

Image source via Soaring Spirits Loss Foundation

I think that pretty much sums it up.

When I first returned home from the hospital, I was indeed too shocked to fully process all that had happened. For the first two weeks there were many moments where it felt like I was still waiting to go into labour and bring my daughter home. I also experienced a healthy dose of denial, where my mind blatantly refused to accept the magnitude of my loss. I would place my hand on my soft postpartum belly and shake my head, wondering how the tiny girl who had been kicking fiercely against my ribs for so long was suddenly nowhere to be found. I was no longer pregnant, yet I had no baby. I had a c-section scar, newly widened mama hips, and engorged breasts overflowing with milk that was meant to nourish and sustain Leah’s life. I was a mother without a child, and it made no sense.

At the same time, there were many other moments where I felt like I would be crushed under the weight of this devastating new reality. Each morning I woke up thinking how I should be taking care of Leah, yet she was not here. I had tied up all my ongoing academic projects weeks ago so that I could spend the entire summer exclusively being a mother to my daughter. I physically yearned to hold her in my arms again and feel her soft newborn skin against mine. I spent hours alone in my room, rocking back and forth and sobbing from the sheer agony of missing her. Suddenly all the light and purpose was gone from my life. The world seemed full of joy and promise before Leah came into being, but as soon as I saw that positive pregnancy test I began carving out space in my life that was specifically for her. And now that she was gone, no other person, thing, or experience could fill that void. This gaping hole will remain for the rest of my life; it is the price I have to pay for loving and losing my darling girl.

In the seemingly endless moments since those initial weeks of mourning, I have grieved for all the pain and struggle that Leah experienced in the hospital. I have grieved for the life she will never get to live. And I have grieved for all the moments I will never get to share with her. I will never watch her take her first steps, or board the bus for her first day of school. I will never sing to her as she blows out the candles on a birthday cake, or snuggle up with her to read a bedtime story.

Most of all, however, I have grieved for the love I will never get to share with her. From the moment I knew she existed, I began cultivating a love that was and will always be just for her. By the end of my pregnancy I was simply bursting at the seams, ecstatic to finally shower this love upon her outside the womb. Now I must carry this love with me until my dying day. It is often said that grief is love with no outlet, and I am now acutely aware of what this means.

More than anything, I grieve because Leah will never know that, of everyone who has ever lived, loved, and lost, for the brief moment in time that she was here I loved her and still love her with every fiber of my being. And I grieve because I will never feel her wrap her little arms around me and hear her say “I know you love me, Mommy. I love you too.”

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