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What Bereaved Parents Wish Everyone Else Understood

Updated: Jan 10, 2020

Maybe it's presumptuous of me to write this post. After all, I am only one broken-hearted mother. Who am I to speak for the parents of loss all over the world? All I know is that nine months into life without Evelyn, I am still trying to wrap my own head around this experience and the unique needs it has created for me and my family, and still very much trying to communicate what I can grasp to the people around me. People who desperately want to help in some cases, but aren't sure how and are too afraid to ask. Instead, they trip over words, cause more pain with some of their actions, and on occasion, disappear completely. That's not to criticize anyone. Intentions do matter. But the fact remains that we live in a death-phobic culture, where dialogue around painful experiences such as child loss are still taboo. That paradigm leaves grieving families more shattered than they already were, and it renders their loved ones helpless to make any significant difference.

I refuse to feed that paradigm. I started this blog to give voice to my own fractured heart, to the pain which is such an indelible part of me and that cries out for acknowledgment and validation as the primary steps in the path to integration. I speak my suffering out loud. And I hope that through doing so, I give other people permission to own theirs.

I've watched my loved ones fumble with little direction and comprehension of how to shoulder this enormous burden alongside us. And I've been regaled with countless similar stories from bereaved parents the world over. So I hope that in sharing this I am not only speaking some of my own truth, but some of theirs as well. And I hope that anyone reading this who has not lost a child may gain just a shred of understanding about the impossible road we are asked to walk each and every day. This is by no means a comprehensive list. There will be things I don't touch on, things I have yet to encounter or simply forgot. Grief brain is a very real thing. But it's a start, an attempt at watering and growing the compassion already seeded in the world, and hopefully generating some where it might have been lacking before. So, with no further preamble, I give you ...

What Bereaved Parents Wish Everyone Else Understood:

This. Never. Ends. Child loss is unlike other personal losses. It does not come with a shelf life. Our connection to our children, our love for them, continues as a living, breathing organism in it's own right. And that tender-hearted beast suffers every day that our child is not here beside us in the flesh. And so it will for the duration of our lives. While some view grief as a tunnel, a temporary detour from the pleasures of life, the grief that comes with child loss is a vast and limitless landscape. We do not travel through with a predictable end in sight. We travel forever, never ceasing to uncover new aches and reflections of loss around every bend in the road. We will not be better or back to normal in six months, or one year, or ten years. We will always carry this pain. When you feel impatient with how long a bereaved parent's journey of grief is taking, ask yourself when you are prepared to stop loving your child. Just as you will never stop loving your children, we will never stop loving and mourning ours.

This is ALL that's happening. Your world may be full of countless developing dramas, a dozen opportunities at any given moment to occupy your mind. But in the world of a grieving parent, there is only one event that is continually unfolding—the death of their child. It trumps anything else that ever did happen, is happening, or will happen. In one year, or ten years, or forty years, I will still be living this nightmare. I will busy myself with various tasks. I will grow and change and shift inside the bubble of this loss. I will look, for all intents and purposes, as if I am moving on. But my child's death will be an active force in each and every day. It will color everything I do or say or see. When you call and talk about the weather, about the news or politics, about work and health and every other thing except the one thing that is still occurring every moment of my life, I feel invisible. I feel isolated. I feel so disconnected from you that I can't imagine a rope long enough to span the chasm stretching between us. It's okay, even years later, to talk about our children, our loss, and how it is still impacting us and you and the way we view the world.

Acknowledge the loss first. When a child dies, everyone is in a tremendous hurry to move on, to get past the sticky, uncomfortable, emoting part and jump to the victorious transformation story that makes it all better somehow, like a rainbow after the storm. Everyone, that is, except the parents and siblings of that child. I have been in no hurry to circumcise and sanitize my pain—to tidy it up for your viewing pleasure. In fact, many grieving parents feel they must defend their right to be in pain, as though our heartache is offensive to the world at large. There is a time and a place for optimism, but it is not in the months immediately following a child's death. Nothing could be more invalidating than to have someone look you straight in your gaping, bleeding wound and tell you in a patronizing tone that everything will be okay. Our child has died. Everything is not okay. We already know that. We need to see it reflected in your eyes and hear it reiterated in your words. Tell me how my child's death has destroyed you, shaken you, rattled your eyes in their sockets. Tell me that you see me, that you will not turn away from the disfiguration of my heart and soul. It won't make me feel worse because it is impossible to feel worse in these circumstances. Acknowledge how horrific this is before you pile on the cliches of condolence and platitudes. Maybe then I will be able to stomach them easier.

Keep Showing Up. In the beginning, just after your child dies, there are a couple dozen people around you at any given moment. There is a flood of food and groceries and flowers and gifts. There are more phone calls than you can answer and an outpouring of sympathy that can be truly overwhelming. That is in the beginning. It usually begins to decline just after the memorial. That's when you start to see who really gets it, who is willing to stick around for the truly hard stuff. In the months following that, your support system takes a nose dive. You shed friends and family the way my husky does her winter coat. There are a few brave souls left standing, and surprisingly, new hearts and faces who gravitate to your side to lift you up as you move through this. (Bereaved parents know how to love each other, and that is huge.) But for those of you standing outside this unbearable experience, don't walk away after the service. Don't disappear in six months, or two years, or two decades. Our journey is only just beginning with that service. It gets very, very hard after that, for a very, very long time. We NEED you, even if we don't know how to say it. We don't need space. Space is isolating at a time when we already feel completely alone in the world. Come visit. Make a call. Send a text or a card. Write a letter. Send books or food or gift cards or anything else you think will help. Keep making your presence known. That's really all we need, is to know that you are there, holding precious space for us. Prayers are great, but they don't fill the silence around us. they don't warm us with a hug. Your body, your words, your acknowledgment are better medicine. Keep 'em coming in the weeks, months, and years following our child's death. I can truly tell you, I don't know if I'd be writing this right now if not for the people who chose to continue to be there for me. This is that hard.

Never ask "How are you?" There are no good answers to this question. Even now, I still hate it. I'm shitty. I'm devastated. I'm focused on getting stronger so I can stay here to support my two surviving children. These are not the answers you're looking for. In truth, that question is usually posed by people who don't really care to know how you really are. We say it blandly to one another with no true desire for an honest, authentic answer. We're looking for a rote reply. Fine. Good. Great. Keep it simple and positive. Posing this question to a bereaved parent is asking them to invalidate their own agony for your comfort. But we're so accustomed to asking it, even those with the best of intentions blurt it out without thinking. Here are some much better substitutes. Instead of asking, "How are you?" Ask, "How can I help?" Ask, "How are you feeling today?" Ask, "How can we honor your child together?" How is not a dirty word. It just needs to be framed differently for grieving parents.

Don't compliment us, compliment our child. I've heard a lot about how strong I am. How inspiring. How proud people are of me. How good I look. I have news, I feel none of those things. These remarks are distancing. They put me on a pedestal I have no desire to be on right now. I know I'm a wreck. It's okay to say it. Like many of the other comments that are well-intended but hurtful, compliments invalidate the reality of our experience. I feel more vulnerable than I ever have, and recognize how much I am at the mercy of the goodwill of those around me for my survival. I don't want to inspire you, I want to help you adequately comprehend the horror of this experience so you will be better equipped to help yourself and others own and carry their own pain. I am not doing anything to instill pride. I am putting one foot in front of the other because I have no choice. And I have never in my life cared less about how I look, which is saying a lot because those who know me know I didn't care all that much before. I don't want your compliments. I want your compassion. Those are very different things. If you must compliment something, compliment my child. My beautiful, brave, intelligent, gone-to-soon daughter, whose name I will never tire of hearing, my Evelyn. I can listen to those compliments for a lifetime.

Just do something ... anything. The most common thing you hear after a child dies, next to How are you?, is "Let me know if I can do anything." I am officially, in this blog post, once and for all, for every bereaved family that ever existed, letting you know, yes, you can do something. You can do any number of things. Take your pick. Take initiative. We cannot think straight in the beginning to direct you. We cannot think straight in some cases for years to come. And that doesn't even take into account the number of people who may struggle to voice their needs even before losing a child. You can bring or send food, of course. But realize that lots of people are doing that. Organize a calendar to space it out so that it helps the family over a long period of time rather than too much up front. You can send gift cards for food takeout or restaurants. You can send gift cards of any kind—visa or mastercard, movie theaters, grocery stores, shopping malls. There are an extraordinary amount of expenses involved in grieving a child, things you would never think of, things the bereaved can not prepare themselves for. Money helps. Try to think of things no else may be doing. Send a maid service or a lawn crew. Send books on grief or certificates for free services that may be beneficial, like massage, acupuncture, reiki healing, and more. Take their cars to be washed. Offer to help balance their accounts or pay bills. Offer to do their laundry, take things to cleaners, babysit the other children, haul the cat with the ear infection to the vet, whatever. Every little thing you take off their shoulders will help. You cannot make this situation better, but you can make aspects of it easier. Don't wait to be told or called or asked. Just jump in.

We are not contagious. You can't catch the death bug by being around us. Child loss is not a contagion. Trauma, suffering, pain—these aren't things you get from being near us. Ask yourself why you find our presence so unbearable? Because believe it or not, when we need them the most, many people surrounding bereaved parents vanish. What about my daughter's death is so hard for you to swallow that you can't even send a text to see how I am doing? Have you considered, if it's that uncomfortable for you, what we might be going through? Here's what I think is really happening. My pain, my sorrow, my loss reminds you of your own unacknowledged pain and suffering, the losses you've ignored, the feelings you've repressed, the fears you've disowned. Facing my tragedy forces you to face your own, to consider the probability that more may be in store, that you cannot control all the variables in your life and the world is not as safe and bright and shiny as you like to pretend it is. Now take a breath and know that I completely understand where you are coming from. Because I've been there too. But that kind of lopsided perspective is not a luxury that's available to me anymore, and if given the chance, I would tell you that you are better off without those rose-colored glasses. If you can sit with me in my pain for even just a minute, how much easier will your own become to bear by comparison? Where might you find healing in your own life as a result of that kind of courage? No, we are not contagious. But we have a lot to give the world when it is ready to stop running.

This is so much more than just emotional. Never mind the fact that we need to stop treating our emotions like they're nothing more than an awkward, messy inconvenience, the truth is that grief of this caliber penetrates on every level. It ravages the mind, leaving the bereaved with cognitive, memory, and comprehension issues we have never faced before. It blasts a hole through our spiritual understanding, stripping away so much of what we believed, asking us to take inventory of everything we thought we knew, leaving us spinning and empty-handed or clinging desperately to the faith we had like the life raft that it is. And it ransacks the body, causing health problems that weren't there only weeks or months before. We swim in a bio-chemical bath that wreaks havoc on our system. Our brains are completely rewired. We don't know ourselves anymore, much less the world around us. We are reborn in a horrific flash, remade and foreign to our own understanding. There is nothing more disorienting than the trauma of this loss. It exhausts us. It complicates everything. It reinvents our entire lives. I remember watching a documentary once about survivors of lightning strikes. Their entire systems were rewired as a result of the electrical shock. They experienced pain that could not be described or attributed to medical understanding. Their personalities changed, so much so that many lost spouses and struggled in the relationships that remained. This is what child loss is like—a surge of power that burns through your entire being. We come away changed forever. We are not the people you knew and loved. We are someone new, someone with a whole new set of needs and preferences and problems. You must learn to love us all over again. However challenging that is for you, it is incomprehensible to us. Every day we scale a mountain with no peak. We have no choice but to keep waking and keep climbing, even in the face of blatant futility. We need your support and compassion and patience with little to no guarantees that we can ever return it.

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