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AFTER RECEIVING A PRENATAL DIAGNOSIS OF A LIFE-LIMITING CONDITION, YOUR LIFE FEELS AS THOUGH IT HAS BEEN TURNED UPSIDE DOWN.
The unexpected nature of the diagnosis, the reality of what it means, and the journey that lies before you can be overwhelming and terrifying. Not only do you have to navigate the now-expected aspects of this process, you also have to contend with the unexpected reminders or triggers, caused by everyday places, objects, and aspects of life.
Simply put, a trigger is something that initiates- or triggers- memories, emotions, or even flashbacks that bring you back, mentally and emotionally, to the moment of diagnosis, loss, or intense feelings of grief. Triggers can take the form of things you would expect, but they can also be things you would never expect or even correlate with your situation. Those unexpected triggers are what we call “stabs in the eye.” It is a crude and rather graphic way to describe it, but captures the unexpected, sharp, and blinding nature of those kinds of triggers.
Sarah Garvey, a mother who lost triplets shortly after birth shares this;
“The very first stab in the eye I felt came a few weeks after I lost my triplets.
My mother and I were sitting outside at a restaurant, and there was a little boy playing between the tables. He looked so much like how I imagined my son, Liam, would have looked. He played near my table for a few minutes before his mom called his name, indicating it was time to leave. When she called out, “Liam,” I lost it at the table. I could not take my eyes off of him, tears pouring down my face. I was completely blind to the rest of the world around us. In that moment, I was catapulted back to when I had held my son for the first and last time. I could see his little features vividly in my mind, and the weight of those moments I had with him threatened to crush me right then and there.
My grief did not care that I was in a public place. My grief could not be contained. I had been triggered so unexpectedly and so profoundly that all I could do was leave. I left my mother, who was also crying, at the table to handle the bill, and I raced to the car. It took a while before I stopped crying, but the rest of the day was an emotional one for me. It had caught me so off guard that I felt exhausted and anxious.”
Immediately following diagnosis, your life is now a minefield. In the early days, your minefield is littered with mines. You can hardly go two steps without hitting one because everything is so raw, new, and overwhelming. Because you know the mines are so close together and the impact is so forceful, you walk with fear of hitting those mines.
These early mines feel like they will kill you or at the very least, severely wound you. They can bring your entire day to a screeching halt because you have to stop what you are doing, face your grief, and somehow continue on. Those mines are the ones that zap your energy, causing you to crawl into bed and cry or sleep.
“Simply put, a trigger is something that initiates- or triggers- memories, emotions, or even flashbacks that bring you back, mentally and emotionally, to the moment of diagnosis, loss, or intense feelings of grief.”
Over time, the mines space out. You do not hit them as frequently, and when you do hit one, it does not have the same forceful impact that it would have had weeks or months earlier. These reminders do not take you out of commission for the day; rather, they give you pause. You allow yourself to feel your feelings, and then you continue on your way. As you continue to venture through your minefield, you become less afraid of hitting the mines. You can even begin to embrace the impact because it reminds you of your baby and the time you had together.
As you progress from diagnosis day through your pregnancy, then into life after loss, you will notice that your minefield changes. You may reach a patch of land where there are fewer and less painful mines, but as you approach delivery day or going home without your baby, you will find yourself once again in a heavily littered section of mines. These ones are excruciating, and once again you are wrecked by them. These mines reignite that sense of trepidation, but it does subside again.
As long as you draw breath, you will live in this minefield. Take heart, though, because your minefield is not a punishment. There is not a single mine that will kill you. As these months and years progress, you will walk with your head held high, not because you no longer grieve, but because you are stronger. You become equipped to handle them. You will know how to navigate your unique minefield. You will know how to come back from the initial shock of each impact.
Sarah Garvey shares this about her minefield;
“Truly, I can tell you that I even smile sometimes when I step on a mine because it is an unexpected reminder of my babies. It can sometimes feel like comfort and connection. It took a long time for me to get to this point, and the shift from the mines-or triggers- being painful and traumatic to welcome and even joyful is the result of a lot of processing. I did not get to this point until I had integrated my grief into my life and made the transition from simply surviving the minute-by-minute, hour-by-hour, day-by-day way of life.
I wish I could tell you how to integrate your grief into your life. I wish there was a way you could avoid your minefield. Unfortunately, the only way around it is by going through it.”
Triggers can take a variety of forms. Some of them are simple, obvious, or concrete. Others are more complicated, unexpected, or abstract.
The most concrete, common, and expected triggers are:
- Places like hospitals, birthing centers, doctor’s offices, and grocery stores
- Smells like baby detergent, your baby’s scent on their blanket, scents you loved or were sensitive to in pregnancy
- Sounds like hospital machines beeping, babies crying, or sentimental songs
- Foods like what you craved or were averse to in pregnancy, your post-delivery meal, foods brought to you by your support network
- Items like baby clothes, blankets, toys, books, maternity clothes, or even your pre-pregnancy clothes
Then, there are the more abstract and complicated triggers:
- Dates and Times
- Grief Integration
- Media: Books, Television, Movies
- Social Media
The more abstract and complicated triggers are the ones that can catch you most off guard. These triggers are also the ones many parents struggle to navigate. Let’s explore these complicated triggers in more detail.
DATES AND TIMES
This is one of the categories we hear the most from families we connect with.
When you think “dates and times,” the first thing that probably comes to mind is the obvious one: holidays. Holidays can be incredibly painful reminders of what you are going through and what you have lost.
Sarah Garvey shares with us the first holiday she experienced after the loss of triplets.
“The first holiday I faced following my losses was Halloween- a holiday so incredibly focused on children that the entire week leading up to it I was unsettled. When the holiday finally arrived, I turned off all the lights in my house and put headphones in to drown out the sound of children’s voices and laughter. I desperately wanted to avoid the holiday, and that is what I did.
I could not fathom a life where I never got to take my babies trick-or-treating, and I had never been one who cared about Halloween at all before. I am now nearly three and a half years out from my losses, and I still feel the void of their presence on every holiday. These dates are unfortunately a lifelong type of secondary loss. Every holiday and every year looks different. Sometimes, it feels better to avoid the day, and other times, it feels comforting to embrace the holiday and create traditions.”
We want to encourage you to find ways to honor and include your baby during the holidays because it can help combat the weight of grief on these days. Creating traditions is a wonderful way to incorporate older siblings or any children who came after your loss because it allows you to continue making memories as a family, and it helps you find ways to honor your parenthood. You have a lifetime of holidays. Take it one year at a time. Do what feels right for you and your family. Just remember that it is okay to want to include your baby in your holiday traditions.
Beyond holidays, there are anniversaries. The anniversary of the day of diagnosis. The anniversary of your baby’s birth. The anniversary of your baby’s death. These are all triggers that you can feel coming a mile away. You can watch as the calendar counts down to these days, and the anticipation can be consuming. From what we’ve learned from other parents, the anticipation is often worse and more painful than the actual day. Give yourself permission to do something or nothing on these anniversaries. Give yourself permission to grieve how you need to. You have a lifetime of anniversaries, and they do not have to look the same every year.
“As the months and years progress, you will walk with your head held high, not because you no longer grieve, but because you are stronger. You become equipped to handle them. You will know how to navigate your unique minefield.”
In addition to holidays and anniversaries, there are also smaller triggers that often fade with time. Many parents have shared that certain days of the week were triggering in the early weeks and months. The triggering days could be the day of the week they delivered, or they could be the day of the week that signified a new week of pregnancy. Additionally, parents have shared that the date that their baby was born and died was a trigger every month for the first year. In the same way that you might mark a baby’s progress monthly on the date they were born, your grief will do the same. It will remind you that it has been one, two, three, or ten months since you held your baby.
As time continues, there is an aspect of it that lessens. You may always feel the weight of the reality that you have a lifetime to live without your baby, but you do learn how to bear that weight in a way that makes room for everything else the future has for you.
Sarah Garvey shares her own experience with date and time triggers;
“I found that if I caught a glimpse of the clock, and it was the exact time my babies were born or the exact time they passed, it would take my breath away. These days and times become so powerful because they are one of the few things we have to hold onto.
To this day, the 10th of every month reminds me of my babies. I do not feel triggered by it anymore. Instead, I like the monthly chance to dedicate time and thought to the little lives that changed mine. I no longer feel gutted when the clock hits a specific time. In those moments, I smile and feel thankful for the little extra reminder of my babies that day. It does not happen often these days, but I relish those moments because they do not feel traumatic anymore.”
Following the diagnosis all the way through the transition into life after loss, you will experience a range of emotions. The unpredictable nature of these emotions can be triggering. You may find yourself feeling a sense of guilt for not being able to cry when you think you should.
Sarah Garvey shares her own experience with unpredictable emotions;
“I was at the memorial service for my babies. I remember talking with our friends and family, giving hugs, and accepting condolences, and the entire time, I kept thinking, “I should be crying. Why am I not crying?
“Emotions can already be complex and confusing to people, but when you add in the complexities and nuances of grief, it can be a whole new experience. You may find yourself feeling emotions that do not feel natural or even appropriate in the moment.”
It seemed logical to me that if the people I was talking to were crying, then I, the mother of the babies, should be crying, too. The unexpected numbness I felt triggered an entire internal dialogue that called into question my love for my babies, my display of grief, and even the impact I was having on the people around me. At the time, I did not know that numbness and an out-of-body experience are quite common for the bereaved during the memorial or funeral service.”
From what we’ve learned from other parents, laughter or feelings of happiness can be incredibly triggering. The first true, belly laugh can trigger an onslaught of self-judgement, guilt, and even confusion. You may feel as though your ability or desire to laugh has died along with your child, however, you will laugh again when something is really funny.
Sarah Garvey shares this;
“My first true laugh came about a month after my losses, and as the fit of laughter subsided, I found myself sobbing. It felt foreign and even wrong to hear laughter come out of me. It felt almost as foreign as the first time I heard myself really sob and produce what I call the “mama wail.” The triggering nature of my laughter unsettled me to the point that I did not have another deep belly laugh until five months after my losses.”
Emotions can already be complex and confusing to people, but when you add in the complexities and nuances of grief, it can be a whole new experience. You may find yourself feeling emotions that do not feel natural or even appropriate in the moment. Many parents have shared that they were shocked by the anger they felt. We all expect to feel sad when we realize that we will lose our baby or babies. An intense feeling of anger can do the same as that first fit of laughter. It can trigger that same onslaught of self-judgment, guilt, and confusion.
When you feel triggered by your emotions, it is so important to remember that emotions are neither good nor bad. They are neutral expressions of the situation that has happened. What you do with and out of your emotions is what can be categorized as good or bad. It is okay to feel angry, but it is not okay to lash out at someone in anger. It is okay to laugh when something is really funny, but it is not okay to tell yourself that you are moving on too quickly or that you do not love your baby enough simply because you found a way to laugh again.
Grief integration is the point in which the loss no longer consumes your thoughts or prevents you from engaging in everyday life.
Reaching this point is natural, and it is something you will experience. Our hope is that you feel at peace about it. That it does not wrack you with guilt or make you question your love for your baby. That you see it for what it is: embracing your life, not forgetting theirs.
Sarah Garvey tells us about her experience with this trigger;
“By far, reaching the point of grief integration was the most triggering aspect of my grief journey. I honestly did not see it coming, and when it happened, it wrecked me. I felt so triggered by it that I lost sight of the fact that it is a good thing. It is a good part of the process, but I felt so guilty.
This point happened for me just shy of six months after losing my Bridget, Vivian, and Liam. I was falling asleep when I bolted upright in bed and realized that I had gone an entire day without thinking of them. Not even once. About two months after losing them, I had gone a full day without crying, and I remember feeling a sense of guilt but also relief. I felt like I had cried every tear I had to give, and I was thankful for the rest that came with just thinking about them without dissolving into tears.
But later, this experience of going an entire day without thinking about my babies felt different. I did not feel a sense of relief. Instead, I felt panic. Was I beginning to forget about them? Would anyone think about them or remember them if I stopped thinking of them daily?
I had not intended to not think about them. It just happened. As the guilt washed over me, I sat there trying to picture them in my mind. I was losing clarity when it came to the vivid memories of their little features. It was the first time that I had to pull out their pictures to really remember what they looked like, and I hated that that was true.
In the early days and weeks, I could not fathom a time when I would not be able to see their faces clearly. I could not imagine it was possible to go an hour much less a day without thinking about them. Yet, that day came.
As time continued to pass, I started noticing that I could go days without thinking about them. I had somehow found a way to carry my grief in a way that really did make room for the life that was happening around me. “
MEDIA: BOOKS, TELEVISION, MOVIES
Media can be to blame for the majority of unexpected; “stabs in the eye” triggers. Before an experience like this, you likely never gave a second thought to watching intense movies or tv shows. Any anxiety caused from them wasn’t a big deal because it likely subsided after the show or movie ended. After all, thre’s a certain distance between you and the stories you consume. Sure you can sympathize with their stories, but those stories belong to other people.
After losing a baby, experiencing a loss of this magnitude can change how you perceive everything you watch, hear or read. Sarah Garvey talks about her experience with this shift;
“After losing my babies, everything changed. I had a new level of empathy, even for fictional characters. Traumatic storylines would stay with me for days. Intense shows designed to get your heart racing made me pace anxiously. I would lie awake for hours after a show like that, unable to shake the cloud of anxiety that had settled over me.
The worst were the unexpected storylines of pregnancy or infant loss. Some of these storylines were validating and provided me a sense of connection. Others simply felt like a plot device designed to give a character a sad backstory. Those were the storylines that hurt the most. The stories where the loss was never talked about again or really had very little visible impact on the characters crushed me. It made me question whether I was grieving incorrectly or too profoundly.”
You may not share Sarah’s reaction to media, and that is okay and perfectly normal. But if you do find media triggering, there are some boundaries and coping skills you can practice.
Do research as needed and pre-read a description for any book, movie or TV show before watching it. Or ask someone who has seen the show or read the book if it contains stories of pregnancy or infant loss. If you suspect a show or movie will contain an intense scene likely to give you anxiety, seek out spoilers so you’re mentally prepared in advance.
Be judicious in what you consume. Only you know how something will affect you. If a popular show contains storylines of pregnancy and infant loss, you don’t have to watch it just because everyone else is. You may also want to avoid shows that you know will scare you or cause anxiety.
Remember, you get to control what you let into your mind in terms of media. This can be incredibly powerful for those of you who might suffer with postpartum mental health issues like intrusive thoughts, postpartum anxiety, or post-traumatic stress disorder.
Give yourself permission to change your mind. If you start watching a show and have to stop, that is okay. You do not have to commit to something that makes you feel sad, angry, nervous, or unsettled. This is a part of self-care.
Know your needs and create boundaries. Boundaries can look like recording shows, so you can fast forward through commercials to avoid the inevitable ones centered around babies or holidays. Boundaries can look like not consuming media an hour before bed to give yourself time to unwind and clear your mind. Boundaries can look like not talking about the news or other sources of media. What boundaries do you need in this area?
It is important to know that you cannot wall yourself off from the world to the point that you never feel triggered. These things are a part of life, and you’ll likely be more sensitive to them than you were before. Part of the challenge is learning to accept that and then learning to live in the world in a way that allows you to remove some potential mines from your minefield.
People can be incredibly triggering. Whether it’s a close friend who suddenly disappeared when your pregnancy took a turn for the worst, or it’s people who say hurtful things despite meaning well and you’re constantly having to educate them. Here are the most common types of triggering people pulled from our own experiences and the families we connect with:
- Friends that fade following the diagnosis, pregnancy, or loss
- Friends who are/were pregnant at the same time as you
- Families with the same makeup as yours (for example, a family that has a newborn baby)
- Pregnant women
- Significant others
- People who ask a lot of questions
- People who ask no questions
- People who grieve at you or make your experience about themselves
- People who say nothing or never acknowledge your grief
- People who are unsupportive or uninterested
Triggering people can be a complicated experience because you cannot simply shut out everyone in your life. Though periods of purposeful isolation can be healthy, closing yourself off to all relationships can be detrimental to your grieving process. Since you cannot simply avoid other people forever, here are some common scenarios parents can experience, validation for the feelings they evoke, and useful coping strategies that can help navigate these encounters.
During pregnancy, you may encounter people who stop you in public to inquire about your pregnancy. The fact that you look normal from the outside can open the door to people assuming you are carrying a baby who you will get to take home. We want to validate the jolting, painful nature of those questions. We want to validate and remind you that you get to control the narrative. If you want to nod and smile and be on your way, you get to do that. If you want to share your story, you get to do that. If you do either one of those and find yourself crying in your car ten minutes later, that is normal and perfectly understandable. Know that others like you have been there.
You may find that friends, relatives, and even co-workers struggle to know how to relate to you. Some of them may ask too many questions for your comfort. Some of them may be so uncomfortable with your experience that they quickly change the subject or never bring it up at all. In both of those situations, we want to validate your feelings. You have every right to feel how you feel in response to the people around you.
We would encourage you to cope in the following ways:
- Give them the benefit of the doubt and assume that they mean well. Most of the time people don’t know what to do or say so they end up doing or saying something that is inadvertently hurtful.
- Educate as necessary and as you feel like it. There is nothing wrong with being upfront about the fact that you are not comfortable sharing so much information or that it hurts your feelings when they pretend nothing happened or change the subject. You do not have an obligation to do this, but if you feel like you need to, we encourage you to do so with grace, empathy, and kindness.
- Know when to let go. Some people will just not get it no matter how many times you educate. Some people may not be worth your time or energy to educate, especially people you hardly know or barely see. Use your discretion. Know when to let their comments go.
You may find that your friends, relatives, and co-workers fall into the category of people who can be very detrimental. These are people who are outright unsupportive, obviously uninterested, or seek to make your experience about them. We have a few words of wisdom for dealing with people like this.
- You do not owe anyone an explanation or justification. If someone cannot put themselves in your shoes, have empathy, and seek to understand (even if they do not agree), do not spend your energy trying to convince them or have them support you. You and your significant other are the only people who have to fully understand and agree with the decisions you make.
- People do not get a say about how you feel or how you grieve. Anyone who tells you to “get over it,” “move on,” or “be grateful” does not understand the real weight and heartbreak you are carrying. Do not let these people make you feel bad or wrong for how you feel and grieve. There is no timeline or perfect set of rules for grieving. Do not let anyone tell you otherwise.
- Know when to move on from a relationship. We’re not advocating cutting people out of your life, but encourage you to set boundaries and maintain healthy relationships. If someone is causing you undue stress, making you feel judged at every turn, or showing you that they cannot and will not be there for you, it is okay to let go and move on. Try honest and open communication, even with the help of a counselor as needed, before ending a relationship. However, there is no rule that says you have to stay in close contact with everyone who was in your life before the diagnosis.
- There is a difference between grieving with someone and grieving at someone. You may find that some people in your life will try to make your loss about them and then turn to you for support. It is important that you clearly communicate your boundaries and needs with these people. It is not your job to carry their grief, too. There truly is a difference between someone coming to share in your grief and cry with you, and someone who is coming to you for support or placing demands or expectations on you.
Navigating people can be incredibly difficult, overwhelming, and emotionally draining. Grief profoundly changes you, so it makes sense that grief would change the relationships you have with the people around you. This is such a large aspect of the grieving process, so we wrote an article dedicated to how grief affects relationships, which you can find here.
Social media is far and away the most common trigger shared with us by grieving families. Whether the trigger is coming from people they know on social media or news being shared, social media platforms can be unsafe spaces for parents grieving a diagnosis and the loss of their baby.
The most common social media triggers shared with us are:
- Friends complaining about what the grieving parents perceive as blessings
- Friends constantly sharing about their pregnancy, newborn, or kids
- Fake pregnancy announcements
- News articles being shared without a trigger warning or way to unsee the link preview
- Insensitive people who comment on the grieving parents posts about the diagnosis, pregnancy, and loss
Social media platforms can be incredible means for connection, information, and support. For grieving parents to fully benefit from social media, we highly recommend a practice of social media self-care: create and enforce boundaries.
Unfollow and Unfriend. If there is a friend, acquaintance, or page that causes you emotional distress (or even just constant annoyance), unfollow or unfriend. Your social media should be a place where you feel connected, supported, and engaged in ways that are healthy. If every time you share a post about your experience, the same person chimes in that you should be over it by now or that you should look for the blessing in it or provides other insensitive clichés, unfriend them. If you follow accounts that make you feel less than or guilty, unfollow!
Leave. If you are in groups where there is always drama amongst the members, leave! If you are in online support groups that are poorly moderated, erupt into conflict, or share triggering information, leave! You owe it to yourself to be careful about what you let into your mind and how you spend your emotional energy.
You have every right to grieve how you need to. You have every right to share as much or as little as you want to. You have every right to control who you follow and who has access to your life.
Sarah Garvey shares this;
Doing a social media clean out and overhaul was incredibly powerful and freeing. I unfollowed the people who seemed to solely post triggering news articles. I unfollowed the ones who seemed to only complain about things I would have given my right arm to experience. I know that everyone has a right to feel how they feel, but their feelings were damaging to me at the time. It felt so empowering to free myself from the frustration that came with seeing their posts. I started following pages that empowered me in my grief, validated my feelings, and provided me with a sense of connection. What I discovered is that I had given social media too much attention and too much power in my life. As I overhauled my social media, I realized how little it mattered to me.
In no way are we advocating for an entirely social media-free life. We’re just giving you permission to clean out, improve, and even care less about it. Just like with media, your mental and emotional well-being is far more important than anything social media could offer.
Life after diagnosis is full of triggers. You now have to learn how to navigate a life that you know is yours, but you just do not recognize it anymore. There are so many different triggers, and we wish we could tell you what yours will be. All we can do is offer some insight into a topic that is so expansive. It’s our hope that this information has helped you feel empowered and equipped to navigate your minefield and recover from every single mine you hit. It won’t always feel so intense, overwhelming, and terrifying.
There will be a day for you that your grief feels integrated into your life. It takes time, and it takes allowing yourself to grieve, process, and just be however you are each step of the way. Until you reach that day, you will feel like you are blindly navigating your minefield alone, but we’re here to tell you that you do not have to do this alone. Reach out and let someone hold your hand as you take the terrifying first steps. Your job is simply to ask for help and then let others support you.
You can ask for support from your support network by providing them with ways to help you. We have written a helpful post that explains the many ways that friends and relatives can support grieving parents. You can find that post here. You can also find support through more specialized means. There are so many options available to you from individual counseling to support groups, and we have written a post about those resources which you can find here.
Allow people to support you how they can because there are aspects of this journey that only you can face. Your grief is unique, and your triggers will be as well. Only you can know what they are and the best ways to navigate and come back from them.
We wish we could tell you that there was a single set of triggers that all grieving parents face, and we wish there was a list of perfect coping mechanisms for each one. We wish we could give you a map to your minefield so that you never hit a single mine. We wish you were not having to stand in the middle of your minefield and make the decision to take each and every step. We wish we could change this for you. And w
e are so sorry for all that you have faced and all that you will.