Grief is a highly individualized experience. No two families share the exact same journey even with the same prenatal diagnosis of a life-limiting condition.
Grief is going to look different for you as the parents of the baby or babies than it will for the grandparents, siblings, extended family members, and close friends. Grief is so individualized that even you and your significant other will walk through your grief differently from one another. These differences in how individuals grieve can be confusing and a source of conflict in relationships.
Finding out that your baby has a prenatal diagnosis of a life-limiting condition is a life-altering trauma. There is no going back to the life you were dreaming and planning for. You are not the same, and it can be difficult to look in the mirror and not recognize yourself anymore. Aspects of your personality will disappear while others will come to the forefront. Your focus will shift to next steps, processing a tremendous amount of information, and wrestling with questions that may not actually have satisfying answers. This experience changes a person, so it makes sense that it changes relationships.
Change is not always a terrible thing. You may discover parts of yourself that you like through this process, like increased empathy, loving deeper, not taking things for granted, or the ability to prioritize. Relationship changes are not always a terrible thing either. You will experience the kindness, love, and support of the people closest to you. You may find out that some people in your life no longer fit, and though that might feel hard, it can be healthy, too. You may find that your relationship with your significant other, though tested to its limits and beyond, is stronger than ever before. All of those things can be good, and they all can come with challenges.
So much of the relational component of carrying to term and facing the loss of your baby or babies is about recalibrating. With each new piece of information or experience that happens, you and the people closest to you will have to adapt and be patient with one another. It may feel tempting to shut people out completely and isolate yourself from your support network. Being isolated may seem easier than maintaining relationships, meeting expectations, and having grace for them when they say or do something unintentionally hurtful, but your support network is critical to your well-being.
It is okay to withdraw from time to time as a form of self-care, but if you find yourself completely shutting people out, you may be suffering from depression, anxiety, or post-traumatic stress disorder. If you think you might be struggling with a perinatal mood and anxiety disorder, reach out to your significant other, a trusted family member or friend, or a medical professional. For more information about perinatal mood and anxiety disorders and how they differ from grief, read our blog post about it found here.
Family and Friends
When it comes to relationships with family and friends, you may find yourself feeling as though you can no longer relate to these people. You are different, and the things that you had in common may seem so separate from the life you are living now. You may find yourself having less tolerance for small talk, even with the cashier at the grocery store. You may find yourself having less energy for the more surface-level relationships in your life. You may even find yourself struggling to relate to people whose problems seem small in comparison to what you are facing.
These feelings are perfectly normal and understandable in light of what is happening to you. However, it is important to remember that people cannot truly know what they do not experience for themselves. To protect yourself and your mental well-being, it is important to establish boundaries and set realistic expectations of people. You might wish that everyone in your life is as profoundly affected and changed by what is happening as you are, but the truth is that that is not always the case. Your boundaries will likely look different for each person in your life, and that is okay. You do not have to tell every piece of information that you have to every person that asks. You get to control the narrative.
Everything else about your life might feel like it is out of your control right now. Yet, the one thing you get to control is your boundaries and how you interact with people. It is okay to make plans only to cancel them if you do not have the capacity to follow through. A simple explanation to your friend or family member is sufficient. Encourage them to continue to include and invite you to things with the understanding that you may or may not be able to attend. If they cannot or will not understand, that is not about you. The friends and family members who really get it or want to support and understand your needs are not going to hold it against you if you do not meet their expectations. Those are the people to lean on.
Be prepared for some family, friends, or acquaintances to distance themselves from you. This says everything about their capacity and nothing about your value. It is okay and healthy for people in your life to know their own boundaries and capacity, and rest assured that you would rather they disappear than do damage by staying. These distancing people make room in your life for the new friends you will make through this journey. Some of the best and most healing support comes in the form of friendships with other parents who have been through or are going through the same or similar circumstances to your own.
One of the hardest changes in your relationships with friends and family happens after some time has passed. The need does not feel as immediate, you have gone back to work, or an arbitrary amount of time has passed. The people in your life begin to reach out less, the meals stop, and life resumes. This is a natural progression, but that does not mean that you are going to be ready for it or feel okay with it. It might even feel as though the whole world has moved on and forgotten about your baby or babies.
Life moves on, but that does not mean that you have to downplay what you are feeling or experiencing. It does not mean that you have to cease talking about your baby or babies. People who have not walked this path do not know that the bereavement period is long, intense, and varies based on the day. If you need a meal or to talk to someone six weeks or six months later, reach out. There will be people who always remember the significant dates and reach out every year. Encourage those people. Let them know how much that means to you and how moved you are that the life or lives you carried affect them so deeply. As much as we want people to remember, they want to be sure that you are not triggered when they do reach out.
When it comes to your relationship with your significant other, be prepared for change. In the same way that you are profoundly affected, and as a result, changed, so is your significant other. Neither of you make it to the other side unscathed.
It is important to recalibrate this relationship continually because as the support network around you begins to taper off, you and your significant other are going to want to be communicative, supportive, and connected.
If you and your significant other are struggling to communicate, this is normal. It is normal to feel like strangers living in the same house.
Depending on your personalities, it may feel more natural and comfortable to lean into one another and feel bonded by the experience. It may also feel more natural and comfortable to isolate from one another and feel distant due to the experience. Be aware of your tendencies. Be aware if one of you feels bonded and the other distant. Communicate your needs to one another. Try and make sure that if you tend to lean towards distance that you make a point to connect with your significant other and make quality time a priority. If you are struggling to communicate in this area, consider couple’s counseling as a way to learn to support one another well through this.
You will likely find that you and your significant other approach grief differently. You may be emotional, and they are more rational. You may be an internal processor, and they are an external processor. You may avoid your grief, and they may want to be present in it. You may find that your grief seeps into every aspect of your life, and they are able to compartmentalize their grief. You may not want therapy, and they may want it.
There is no rule that says you and your significant other have to grieve and mourn exactly the same way, every single day, to have a healthy relationship in the wake of diagnosis and loss. The only rule is that you and your significant other should try to move through the bereavement period together. That is not to say that you should set a timeline or follow a pattern. It simply means that you try to be open and honest about how you experience grief, what mourning looks like for you, and what you need to feel supported.
As much as you might wish it so, you and your significant other are not mind readers. Even if you are not a very outwardly emotional person or an external processor, it is so important to acknowledge to your spouse that you are in fact grieving. For external processors, it is so easy to assume that your significant other is not grieving just because you cannot see it or it does not look like how you think it should.
Men and women grieve differently. It is common for you, men, to feel as though you need to put your grief aside and handle everything. As men, you might feel the need to put your own grief on the back burner in order to care well for your significant other, your living children, your baby or babies while also maintaining your job, the household, and any other responsibilities you may find yourself putting on your shoulders. But, your grief matters, too. Your feelings matter, too. Everything from diagnosis to carrying to term to labor and delivery may not be happening to your body, but it is profoundly affecting you.
As much as your significant other might appreciate and need you to shoulder most of the responsibilities of life, they also need you to be present with them at each point in the process. The ability to compartmentalize can be a tremendous coping skill that allows you to handle things beyond what your capacity would otherwise be, but be aware of the tendency to over-compartmentalize to the point that you avoid your grief all together. It might not feel natural to communicate your emotions and grief, but withholding that information from your significant other can lead to feelings of isolation for both of you.
As women, you might find yourself so consumed with gathering information, making plans, and ultimately, grieving that you forget to make time for yourself and your significant other. The pull of motherhood during your time with your baby or babies can be all-consuming. A life-limiting diagnosis does not change your deep physical and emotional need to nurture, love, and mother the baby inside you. In many ways, it intensifies that need drastically. Since you know that your time is painfully and unfairly short, you may become so focused on your baby or babies that you lose sight of everything else.
So, it is so important to take a moment and check in with yourself and your significant other. What do you each need? If you are finding yourself constantly needing to externally process your grief and your significant other is struggling to meet that need, you may need counseling. Counseling both for you as an individual to get to process, unload, and learn, and counseling for you and your significant other to learn how to communicate about and through your individual experiences with diagnosis, carrying to term, and grief.
Do everything that you can to make sure that when the tidal wave of grief hits, you both know that you do not have to go through it alone. There may be times when something you see, hear, or experience reminds you of the day of diagnosis or anything that follows. That reminder, or trigger, may cause a negative emotional response like fear, panic, sorrow, flashbacks, or a physical response like nausea, shaking, or sobbing.
When you are triggered by that reminder, share that experience with your significant other. Feeling triggered can be overwhelming, and talking through it can help you process. As helpful and important as it is to share the triggering moments, it can be equally as healing to share when something makes you smile or gives you a sense of joy or peace. Communicate when you want to talk about what is happening or has happened. This can be as simple as saying “hey, can we talk about our baby tonight?” When that happens, make time. Prioritize each other’s needs.
Days, weeks, and months after diagnosis and loss, you may find that you and your significant other have differing memories of each experience. Episodic memory is a person’s unique memory of a specific event. Though you experienced the same diagnosis and everything that follows, your detailed memories are going to differ from one another in either small or large ways.
You may have experienced this at doctor’s appointments when each of you retained different amounts information from the appointment or you each walked away with a differing understanding of what was said.
Following labor and delivery, you will likely each have a significant moment that stands out in your memory. It might be your individual experience of holding your baby or babies for the first time. It may be the moment you watched your significant other become a parent or the moment you watched the woman you love exhibit unimaginable strength during labor and delivery. Those moments are important, and you will cherish them as you face each day, and it is so vital that you share those beautiful memories with your significant other.
You and your significant other are all each other have when it comes to a shared experience. Though that experience might differ for both of you, you two share something sacred: a bond like no other. Seek to find comfort, not conflict in that. Share your thoughts, emotions, and experiences from the day of diagnosis through bereavement and beyond. Talking about your baby or babies and your shared experience even years down the road does not mean that you are stuck. It does not mean that you have not moved forward and picked up the pieces of your life.
Continuing to process your experiences with your significant other means that you acknowledge the trauma you two went through. It means that you honor the beautiful life you two created. It means that you honor the heartbreak and the moments of joy. Just like any parent shares stories of their living children, you have every right to do the same. So, parents, communicate your shared and differing experiences. Make time for one another. Support one another, and when you are both struggling, reach out to your network of support. Trust that those relationships are built on the foundation of love, heartbreak, empathy, and the deep desire to remember and love your baby or babies by caring well for you as the parents.