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WHEN PARENTS RECEIVE THE NEWS THAT THEIR BABY HAS A LIFE-LIMITING CONDITION, THERE IS A RIPPLE EFFECT OF GRIEF AND LOSS.
The greatest impact is felt by the parents, and the next greatest impact is that felt by the grandparents. As grandparents, you face a unique and profound grief that starts the moment you learn of your grandchild’s diagnosis. Like the parents, you are grieving for the baby and the life he or she will never have. However, you also have the compounded grief that comes with watching your own child suffer an unimaginable journey and loss.
As you watch your son or daughter bear the weight of the diagnosis and all that follows, you may feel as though you are losing them or aspects of them that you love. That sense of loss is completely valid and understandable because a grief of this magnitude leaves collateral damage. No parent that suffers the loss of their child remains unscathed. You may feel as though your son or daughter has lost their smile, their ability to be carefree, and their positive outlook on the future. You may watch as your son or daughter becomes gripped by fear and anxiety because your child now knows a pain unlike any other. We can imagine that watching your child and their significant other continually face heartbreaking experiences is devastating for you. We can imagine that you would give anything to change the circumstances or bear the burden of grief and loss for your child. First and foremost, you are a parent grieving for the pain and suffering that your child is experiencing, but you are also a grandparent grieving the loss of a precious grandchild.
With a grief and loss of this magnitude comes a need for a tremendous amount of support. In our experience working with families and medical professionals who deal with parents facing loss, we can tell you that it is incredibly common for parents to feel as though they cannot focus on anything other than the diagnosis, continuing the pregnancy, and then their own grief after loss. Parents lose sight of everything else because they know it will take everything they have to endure what is coming.
As a result, these parents depend heavily on those around them and that often means that you, grandparents, are the ones to help pick up the slack. Your grief is often unintentionally overlooked because the parents are the ones visibly struggling. Everyone is doing what they can to keep the parents’ heads above water, and we have no doubt that you are the first ones to reach out and help. Yet, being that stable and consistent support can take a toll on you. It can prevent you from feeling like you have the opportunity or right to express your own grief.
In no way are we telling you to stop offering support to your child and their significant other. We know that as a parent you are more than willing to put yourself second as you help them navigate this difficult process. We simply want to validate that you are allowed to grieve both as a parent and as a grandparent. We are encouraging you to pause and hold space for your own emotions every once in a while. Provide yourself with the opportunity to grieve freely and intensely.
By practicing this act of self-care, you are helping your grandchild’s parents. You cannot expect to sustain a constant level of support for the parents if you ignore or push down your own grief. Eventually, it will surface because a grief of this magnitude does not just resolve itself. To be the most steady and helpful support you can be for the parents, you must have a healthy practice of self-care. To help you process your grief and integrate it into your life in a way that is sustainable for years to come, a healthy self-care practice is critical. Self-care for you as grandparents does not look that different from the self-care that I encourage parents to practice. To learn more about self-care in the wake of a prenatal diagnosis of a life-limiting condition and the loss of a baby, please read our post found here.
“I can imagine that you would give anything to change the circumstances or bear the burden of grief and loss for your child. First and foremost, you are a parent grieving for the pain and suffering that your child is experiencing, but you are also a grandparent grieving the loss of a precious grandchild.”
One act of self-care that we highly encourage you to practice is leaning on your own network of support. For the same reasons that parents need a support system of friends and family to come around them, you do, too. You do not have to be strong and self-sufficient throughout this experience, and frankly, we encourage you not to try to be. You need people in your life who can help you, and by letting them help you, you are supporting your child and their significant other. When you know that you have people to count on when you need tangible or emotional support, you are able to give more of your time and energy to supporting your grandchild’s parents.
You are not somehow less strong or less of a parent because you might need help with meals or errands. You are not wrong if you need someone to just sit and grieve with you. Your grief is valid, and your need for support is normal. Having a network of support allows you to grieve when and how you need to. There is a freedom found in grieving with your friends and family that you may not feel when you are in the presence of your child and their significant other.
When you are with the parents, those moments are about the baby and the baby’s effect on all of you. In those vulnerable and tender moments, we want you to know that it is good to grieve and cry with your child and their significant other. You do not have to hide or diminish your own grief because there is a difference between grieving with someone and grieving at them. We believe that you will know and be able to tell the difference.
By sharing your love for the baby and heartbreak over the diagnosis and loss, you are showing the parents that they are not alone in how they feel. Because this is a shared loss, sharing your emotions is not a burden to the parents. So, as long as you are not looking for the focus to be on caring for you or supporting you in your grief, you are not hindering the parents’ grief process.
Your support network is there for you to turn to when the moments arise that you need the focus to be on you and your grief entirely. Those are the moments when we encourage you to ask for help with any aspects of daily life that you can let someone take off your plate. Let people in who want to know about your grandchild and the loss you are feeling. We can imagine that asking for this kind of help is every bit as difficult and uncomfortable for you as it is for parents. With that in mind, we wrote an article to help people know the best ways to support grieving parents. Every piece of advice or suggestion in that post is relevant for meeting the needs of grandparents, too. We encourage you to use this article as a guide for discerning what would be helpful to you. Trust your network of support enough to either ask them directly for what you need or by sharing this post with them. You can find the post on supporting grieving parents here.
“Because this is a shared loss, sharing your emotions is not a burden to the parents. So, as long as you are not looking for the focus to be on caring for you or supporting you in your grief, you are not hindering the parents’ grief process.”
Grandparents, if we have not already convinced you of this fact, you have a unique and profound experience of grief throughout your child and their significant other’s carrying to term journey. So much of your grief looks similar to the grief experienced by parents, and just like the mother and father, you will experience a vast range of emotions from the moment of diagnosis. You might experience a sense of shock and numbness, feeling overwhelmed or out of control, anger, guilt, anxiety, loneliness, yearning, sorrow, and even hope, joy, and peace. To help you understand and process the range of emotions you might face, we encourage you to read the article that we wrote for parents found here. The words and heart behind that post apply to you as grandparents, too.
Where your grief looks similar to that of the parents, there are nuances that can feel surprising, abnormal, and even isolating for you.
From the moment of diagnosis, your world is turned upside down, too. The future as you envisioned it has been irrevocably changed. Like the parents, you are faced with a diagnosis and an overwhelming amount of information that may be entirely new to you. The weight of the reality of what a life-limiting prenatal diagnosis means can be impossible to fully wrap your mind around. All that comes with the parents choosing to continue the pregnancy can feel daunting and hard. By no means is this choice an easy one, and we are not here to tell you otherwise. What we can tell you, though, is that the choice to continue a pregnancy despite a life-limiting prenatal diagnosis is a choice for time. It is a choice that allows parents a way to process, create memories, and prepare for whatever amount of time they will have with their baby in their arms.
There will be aspects of this journey that you do not anticipate or expect. The parents may make decisions that you might not agree with or understand. You may not have all the information to explain the why behind their decisions. You may not be invited into every step of the process, and wecjust want to say that we acknowledge the pain that might come with that.
In the same way that you have always been a safe place- a safety net- for your child as they navigated life’s challenges, took risks, and made decisions you might not have agreed with or understood, we’re asking you to be there when the weight of this circumstance and grief threatens to overwhelm your child and their significant other. Offer support, wisdom, and empathy when they turn to you as a sounding board. Be there on the sidelines, ready and waiting. We acknowledge the challenges and even the loss of being on the outside looking in. The highest and hardest call of parenthood is knowing when to put your own feelings and needs last despite the cost to you.
There is nothing easy about what is being asked of you. We can imagine the difficulty of not being able to fix the circumstances, provide answers to the profoundly painful questions, or lessen the pain felt by your child. We can imagine the weight of the responsibility of being there for your child and their significant other while balancing your own grief. Your role asks a lot of you, as a parent and a grandparent, and we see you and your grief.
Part of being there for the parents means that you miss out on time. We know you would never want to take a second of the limited time your child will have with their own baby, but it is okay to grieve the cost of that sacrifice. It may mean that you never get the chance to meet or hold your grandchild while he or she is living. It may mean that you miss the opportunities to make memories or witness the tender moments in which your child became the parent you always imagined they would be. We grieve that with you.
When you are feeling helpless, it can be tempting to channel that into action. You will likely feel the impulse to be present or involved, and it can be hard to discern what your role or level of involvement should be. Our encouragement to you is to communicate openly with your grandchild’s parents without expectation. Offer to be present in any situation that they might desire your presence, but also let them know that you understand and support them if they need you not to be present. When there is so much grief and heartbreak, it can be easy to personalize situations, but please do not take their decisions as a judgment on who you are or how they feel about you. Simply put, they are doing the best they can to navigate impossible circumstances with the least collateral damage possible.
“In the same way that you have always been a safe place- a safety net- for your child as they navigated life’s challenges, took risks, and made decisions you might not have agreed with or understood, I am asking you to be there when the weight of this circumstance and grief threatens to overwhelm your child and their significant other.”
Where parents feel helpless to fix the situation for the tiny life they have created, you feel that same helplessness compounded by the desire to change the outcome for the parents as well. You have a unique perspective of what a full life lived is like, and it makes sense that you would acutely feel the pain of a life that will end too soon. That sense of helplessness and loss can feel like a form of survivor’s guilt. You may find yourself questioning why them and not you. You may feel a sense of guilt for not being able to fix the circumstances or do more to help the parents and the baby.
Rationally, you know that there is nothing you can do, but guilt is not rational. Do not minimize these feelings simply because they defy logic. The loss of your grandchild is not your fault, but it is normal to feel a sense of guilt. The pain your child and their significant other are experiencing is not your fault, but we can understand, as a parent, feeling guilty for not being able to lessen their pain. You have always been there to nurture and comfort your child when life has been cruel, hard, and difficult to understand. Now, your child is facing the deepest, most gut-wrenching pain of their life, and there is nothing that will make it better. So, your feelings are valid and understandable.
Just like with grief, the way to manage this sense of guilt is to validate, process, and give it time. It does lessen over time so until it does, accept it as a normal part of the process, grieve when you need to, reach out to your network of support, and be open to seeking specialized support if you feel like it would help. Counseling can be an incredibly healing and insightful process. You may find that support groups or even friendships with other grandparents grieving their grandchild are helpful for you. We wrote an article about the benefits of specialized support for parents, and the information in this post would be informative for you as you discern which type of support would be most helpful to you in your grief. You can find this post on counseling and support here.
Grandparents, this loss is yours, too. You have the right to express your love and grief in ways that are healthy for you. You have the right to find ways to honor your grandchild’s memory and your role as their grandparent on holidays, their birthday, and the anniversary of their death. There is no timeline for grief, whether you are the parent or the grandparent. A whole life is missing from your family tree, and with it, the legacy as you imagined it has been lost. It is just and valid to mourn that loss forever because no one should know the pain of watching their child bury a baby.
Our hope is that this article helps you navigate your own grief. We see you, and we acknowledge the devastation you are feeling. Your feelings are valid and important because you, too, have lost a piece of your future. We see the significance and the magnitude of your journey and experience. We recognize the nuances of your grief.