Tag: perinatal bereavement

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Be Kind… perspective from a grief worker.

A few months back, I was pulling out of a gas station/convenience store. A large truck was pulled up alongside the store to unload its goods, blocking the view of the exit. As I cautiously pulled around the truck, I found myself nose-to-nose with another vehicle. While it took me by a bit of surprise to suddenly be face-to-face with another driver, I was thankful for he and I’s quick reflexes and attention. But as we pulled around one another to maneuver the tight space, and our driver’s side windows were in close proximity, my positive outlook faded, as he rolled down his window and angrily screamed “Pay Attention!!!”.

Now if you know me, I’ve got a pretty tough skin and it’s not like me to shirk away from confrontation or even to be embarrassed easily. But this one caught me off guard and I’d be lying if I said it didn’t hang with me a bit… not in an all-consuming, pre-occupied way and not in an “I’m gonna cry” way… but it bugged me. Mostly, I think, because it was so uncalled for. I WAS paying attention. If I hadn’t been, our careful navigation would have instead, resulted in a collision. We were simply in each other’s blind spots. And instead of being gracious or understanding, you screamed at me loud enough for the whole gas station to hear… for what?

And that little, insignificant interaction is just what came to my mind when I rode home and wound down after one of my bereavement shifts.

As a perinatal bereavement coordinator, it is my job to assist and support families who have lost a child either in pregnancy or in the first year of life. I work at the bedside as well as conduct telephone/e-mail follow-ups, moderate monthly support groups and organize annual events. Of equal importance, I support and educate staff and the community on caring for these families and themselves, in this most heartbreaking work. With my close interactions and ongoing communication with the many families, staff- doctors, nurses, techs, and various members of our community, I hear and see a lot…and I gain a lot of perspective.

And as the faces of the parents I held that day, replayed in my mind… all I could think about was… in a few days… they are going to bury their child. Somehow in the deepest depths of their sorrows, they are going to crawl off the floor and carry out the impossible task of making funeral arrangements for a child they have been dreaming of for a lifetime. And at some point, in the midst of that horror,… they’re gonna need to put gas in their car, groceries in their cupboards, and pick up sanitary napkins or pumping supplies because they’re probably still bleeding and their breasts are bursting for a baby they can no longer feed. And when they do…

I hope people will be kind.

When I got home and crawled into my bed, I both lamented and mindlessly scrolled social media, my page seemed to be flooded with angry people- people calling other people “Sheeple” and “Idiots”, people angrily protesting masks- swearing that it will damage their children, fighting about a vaccine that was designed to save lives and has somehow become a political war, calling desperate women “murderers”, people on both sides lashing out instead of listening… and it all felt so petty and selfish and narrow-minded, when the parents I saw today, would give up the world just to hold their child alive again.

And all I could think about was… I wish people would be kind.

A few months down the road and these families will once again try to integrate back into society. They’ll sit down to write emails to their employers about when and how they will return to work and they’ll talk to their children’s guidance counselor about a plan for the grieving sibling. Each and every one of them will have to navigate the awkward return when people don’t know what to say and avert their eyes… on top of the ignorant comments and inappropriate questions- “What happened?” “Was it someone’s fault?” “Well at least it happened early”…. “You can have another one.” Because somehow, the idea of replacing an adult is preposterous but replacing a baby is still an idea people like to throw out there. They’ll construct an exit plan for work/school in case they break down. They’ll be tasked with the heart-wrenching decision of what to do with the nursery. And if they try to return anything to the store, an unknowing counter clerk is likely to ask “Why are you returning these?” and they will have to concoct a reply.

And all I can think about is… I hope people will be kind.

I know just how many families at one county hospital are faced with these tasks every week… and that’s just the babies. Then you add in the children, the teens, the young single adults, the parents and grandparents. And it’s not just death… there’s kidnappings and runaways, devastating diagnoses and life altering injuries, there’s trauma and abuse and it spans every population. There are people who are affected first hand and there are people who do hard things for work, in discovering and managing these crises, and everyone suffers. Every one of these things happen far more than anyone realizes… far more than what makes the news. They affect far more people then anyone knows. And not everyone’s support system and resources are equal. Some people don’t even have paid leave… or their household provider is the one being lowered into the ground. And walking down the street, you would have no idea who those people were.

I can still remember the first time I went to the grocery store after my brother’s suicide. I remember thinking “How can the world go on right now… all of these people are just going about their day as if nothing is wrong… but my brother is dead. I’m here, amongst all these people and no one knows what has happened to us.” It felt like my gut had been split open and I was hemorrhaging all over the floor, and no one noticed.

From the hospital room, it’s my job to provide support and resources and ensure that they have a safe ride home. I’ll call or email periodically to check in and intervene if I need to. But by and large, they are out there in the world, at everyone’s mercy…

And all I can think about is… I hope that people are kind.

We are all humans and we must be willing to give both ourselves and others grace. We all make mistakes. We all have bad days. I was known in my youth to flip quite a few people the bird if they pissed me off while I was driving. Patience has not always come to me easily and directness is a communication skill that is both a blessing and a curse of mine. But with every tear that I wipe, every parent that I hold from hitting the floor, every wail that echoes in my mind… I gain more and more perspective.

This work isn’t for everyone… in fact, it’s for very few…. but take this perspective from me….

When you go out again, when you feel a little road rage bubbling up for a fellow driver, when the person standing in front of you forgot their wallet or an item in the store and holds up the line, when you feel the need to communicate your feelings or feel slighted because something isn’t going your way… Remember, that things can be much, much worse… and remember… that the scars people carry are often hidden. It is unlikely that any mother will turn to you in the check out line and tell you that her child just died, but she might be so distracted that she forgets her wallet, pulls out in front of someone, misses her turn and slams on the brakes, is late for an appointment.

And the cops, firefighters, paramedics, doctors, nurses, and all frontline workers who see and manage horrors as part of their line of work, too feel these tragedies and do their best not to take it home… but we’re humans, not robots. And perhaps if we’re grumpy, quiet or stand-offish, it’s not that we have a chip on our shoulder, but are instead shouldering that trauma, so that others don’t have to.

Perhaps, if we all tempered our responses with grace and understanding. If we gave people the benefit of the doubt and considered that some people might be having a reeeaally bad day/week/month/year… it’s possible that we may give a few undeserving people a break… but it’s even more possible that you saved a shattered person from even more pain and difficulty.

I know what it feels like to hurt so badly that you don’t feel like you can breathe. I know what it feels like to be so broken that you don’t know who you are anymore… much less what day/time it is. I know what it feels like to lose friends because you don’t have the energy for anything more than basic life tasks. And I know what it feels like to return to work and school and pretend to be strong and pretend to function when your mind is both empty and maddeningly busy all at once. And still, some people have it so much worse… and I just don’t know how they do it.

And when I think of them, and I remember my own hardest days, and the stupid angry driver , and the faces of those parents that are now seared into my brain…

All I think about… is I hope… I pray… people can just be kind.

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Water, Leaves, and Stones… a reflection on the ripple effects of both tragedy and goodness as witnessed by this nurse, teacher, grief worker and foster parent.

 

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There is an image that is used by many perinatal bereavement programs which is that of a green leaf floating on the surface of still water. It is an image that I see every time I do grief work and one that is taped to the hospital room doors of families who are experiencing tragedy. And when I do grief education, I take a minute to discuss that image and the symbolism that it represents. There are quite a few components to that image that hold significance; but the one component, in particular, that always stands out to me, are the subtle water ripples around the leaf. While we focus the majority of grief education on the immediate family, (and we should) … I sometimes think we neglect to mention the many ripple effects that grief has on the world around us. And while the leaf is a perfect choice for this image- as it represents premature loss; sometimes the idea of a cold, hard stone works better for me.

When a leaf first falls or a stone is tossed into a still pond, the break in the surface is a sudden and loud disruption. Those closest to the disruption, to the loss, feel its effects the strongest and the fastest. They are the ones standing at the edges of the hole that is created when the stone breaks through the water’s surface.

From that hole, from that initial impact, the effects continue to spread outward, from one circle to the next, ending in a seemingly remote place, the edges of the shoreline. There, far away from the inner circle, someone reads a story that was inspired by that person’s life or they receive the goods distributed by the charity that was created in that person’s name. Even subtler and further away still, are the ideas and the developing culture that is perpetuated by the feelings and ideas of the outer circles, like whispers into the ears of society telling us how we should feel or who/what was to blame. While these ripples are much quieter and much subtler than those closest to the loss, they are very much felt and very much have an effect on the world around us.

I have been touched by two types of loss that share similar ideas and feelings by society: Perinatal Loss (which encompasses any pregnancy loss or death of an infant close in timing to its birth-miscarriage, stillbirth, severe prematurity, genetic conditions or birth defects non-compatible with life and neonatal death) and Death by Suicide. Both types of death are largely considered “taboo” by society. When something becomes “taboo” it doesn’t occur with less frequency; in fact, both types of loss are much more tragically common than anyone realizes. But its occurrence is often ignored or mention of it avoided- either because one is afraid of “catching” it or because one is uncomfortable discussing it. And uneducated, often negative ideas and assumptions are often made.

While tragedy, I find, is not contagious, feelings of discomfort and negativity often are. This perpetuation of negativity/discomfort regarding both suicide and infant and fetal death leads to a lack of acknowledgment of the death by society and ultimately, isolation and complicated grief of those closest to the loss. Loneliness is an awful awful feeling. And then guilt and blame, the demonic twins of tragedy rear their ugly heads and they too feed into the tone of those quiet circles that move outward from the stone. Tones that encourage us to look away, to avoid, to think they must have done something wrong or missed something. Tones that allow us to feel that it only happens to them, not us.

Without even realizing it, the negative energy that is fed into those ripples perpetuates pain and it leads to the under-serving of those affected the greatest by that loss.

Through my journey as a bereaved loved one and my years of public service, I have come to realize that we all play some part in the circles of change.

And not all leaves and stones represent death.

As a mother, a teacher and a nurse, I know the effects that my words and actions have on my children, students, and patients. We all do. Because regardless of our backgrounds, we can all recall a time when we were taught, when we were raised and when we were ill or injured. And we can all recall how those various experiences and the people around us, made us feel- be it good or bad. Regardless of how many years tick by, we can still remember those people who helped to build us up and those who tore us down. And while a significant loss is known to make a strong and definite impact on our development of self, oftentimes it’s the seemingly smaller moments in life that too, become life-altering ones: The words of a mentor, the patience or annoyance of a teacher, the attention or dismissal of a caregiver, the confidence or chastisement of a parent… in the tiniest moments of life can cause large circles of influence on the human spirit.

In the few short months that my family and I have begun the journey of fostering, we have witnessed the most extraordinary effects on people that we could have never predicted. The stone of a child entering the foster system sent immediate ripple effects into the pool of our lives and our home. And in spite of some seemingly inevitable tones of judgment and isolation by people who don’t understand; we have seen more goodness, more understanding, more compassion, working their way into our circles, than we could have ever predicted.

We entered this journey to help children. Through direct affirmation, we can see children who have been immersed in ignorance and anger, now learning love because of our involvement. It is more beautiful and more affirming than we could have ever imagined. And they have changed us as much as we have changed them.

We are better people because we elected to stand by the edge and help catch that stone.

But as beautiful as that is, that’s not what surprised us the most. What has surprised us the most, are the effects that we’ve witnessed rippling further outwards from our experience:

The people who took no previous interest in foster care or adoption, who are now researching the requirements.

The people who previously only worked to save babies, who are now taking a step to save older children too.

The people who in their minds, so easily tossed foster children into the “Damaged” bin, who are now seeing the faces that we love with sweet endearment and compassion.

The parents, not of foster-children, but the parents of children who ‘don’t quite make the mark’ for removal- the parents who have not made their children a priority, who have sparked a sudden interest to do better and to be more present in the lives they created.

The workers collecting a paycheck, in an overwhelmed and inundated system, who have seen love and progress and healing and have been reminded that despite the burn-out and the endless cases, it is tiny human hearts that are on the line. And they have softened and bent in beautiful ways.

And much further away, with no credit to us at all… are the messages in recent movies (like “Instant Family” and “Shazam”) that feature top stars and foster kids presented in a loving manner; even a Sesame Street puppet, who shares perspective and teaches inclusion.

Because while negatively spreads, so does goodness. Good energy begets good energy and waves of change happen when we initiate it.

Though early in our journey, we have been shown that good people can make mistakes and sometimes it’s not our job to rescue them, as much as it is to assist and teach them. We would’ve adopted our first three foster children in a second… but we learned that our efforts were better served in teaching their parents and other foster parents how to love and support by example. A similar message to that of grief support… where we too can’t rescue the bereaved, but we can guide and support and love them.

And it doesn’t take a movie star or a PhD to do that.

I am no super-human. I was raised below the poverty line and I hold college debt that I will take into retirement. I am married to an immigrant and together we make a very middle-class income. We live in a small 3 bedroom, 1 1/2 bath home that faces the side of a gas station, just outside the lines of one of the murder capitals of the world. My children have learning differences and therapists. And when I’m not around said children, I love to curse….and I also love wine. But together, we play and we talk and we love one another endlessly… and despite our very small space and limited abilities, we are changing are the fucking world! Not on a Mother Theresa level, not on a Noble Peace Prize level… but on an everyday tragedy, everyday joyous celebration, every day pond-skipping-stones level.

The nurse in me is forever aware that we never know when our card is up.

The foster mom knows no one is immune.

The teacher knows everyone matters.

And the mother in me won’t let me quit.

And so the ridiculous ven diagram that is my life evolves and the circles just keep coming from my ever-evolving pond.

It is so easy to see and perpetuate the bad. The bad is real and it hurts and mustn’t be easily dismissed. We must acknowledge it and be patient and work through it. And we must accept that that pain will forever change us.

But we can’t dismiss the good either. It too must be acknowledged and then fed; because it too, forever changes us. Like the scars left on abused babies bodies and the ache of the empty arms of a mother, so are the seared imprints of love on their hearts when they are cradled by someone who cares. They will never forget that pain, but neither will they ever forget the love either.

The ripple effects, the rhythmic and vibrating circles of cause and effect, are one and the same. It’s the energy that we choose to add, that changes the direction of the tides.

What if instead of dismissing or jumping to conclusions, we took a moment to educate ourselves and to try to understand? Or even more, to love?

Like the untimely falling of leaves, or the misdirected toss of a stone, not every component of life is one that we get to choose, or one that we welcome. But when those waves of impact strike us, will we add to them judgment and misfortune? Or will we change those circles into life-long lessons of love and acceptance?

Through our words and actions, we can choose to perpetuate anger, distrust, aggression and judgment OR we can be the waves of peace, trust, love and understanding.

The choice is ours. Go make your own ripples. The world is waiting.

 

 

The leaf image discussed in this piece is credited to Gunderson RTS.

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This not so random day in October

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Her wrinkled hands hold back the curtains and she stands and stares as the colored leaves once again begin to fall…and she remembers his face, on this not so random day in October.

She takes her morning walk, like she does every morning. But today, in the crisp air, her gaze is distracted and her pace is a little slower. She still stops for coffee at Betty Lou’s, but today, she’s a little quieter. “You look tired, my dear,” her friend takes note. A nod and a small, forced smile is her only reply. She finishes her walk home and notices the middle-aged man helping his elderly parent out of the car. The old mother once again feels that dull ache, on this chilly, not so random day in October.

Clearing out her office, before the winter weather begins again, before she’s too old to enjoy living, before time robs her of what is left, she begins to fill her empty box. The pictures and the diplomas that once hung on busy walls, leave lonely nails in their place. In her perfectly manicured hands, she holds the frame of a photo that makes her pause. It wasn’t the employee of the year award or the doctorate degree, but a single photo with a silent sign that only she could see. She strokes her silver hair and is lost in thought as she stops to reflect. 30 years at the same office, and no one ever noticed that she always requested vacation, every year, on this not so random day in October.

What a beautiful wedding! Bright orange and yellow mums and sweet little acorns on the tables, the sign of new beginnings. The band plays and the people dance and young love fills the air. And as happy as she is for the perfect match…when the beaming groom takes his mother’s hand….the music seems to quiet and the twinkling lights stop. In her world, time stands still and a small tear sneaks past the tiny wrinkles around her eye. With a smile on her face, her heart still longs for him, on this festive, not so random day in October.

Raking the leaves, it’s best to keep busy.  There’s too much to do, to sit and wait. But her mind is full and she wonders when this day will stop being hard. A butterfly lands on the bush beside her, a rare sight this time of year. The orange and black wings beat ever so slowly and her efforts to be productive are paused. “You’d be a senior this year…” she says… and she stops to imagine how his dark hair would’ve come in. I wonder if he had my brown eyes or his Dad’s blues…Would he be a football star? Or a science geek? Homecoming, Prom and Graduation are daunting days ahead that she dreads. And once again, she feels robbed, on this chilly, not so random day in October.

Readying the decorations, she plops two new mums on the front porch and dusts off the old wreath. This is never her favorite time of year, but deception is easier than explaining. Despite her pain, she tries to make the house look welcoming. Halloween will be coming and the kids will be in costume. She wonders what he would’ve wanted to be… A super hero perhaps, or maybe a fire fighter? She can’t decide if the trick or treaters and the bowl of candy she reluctantly empties into their pillow cases is soothing reassurance or a stabbing betrayal. She turns off the phone and sits alone, hot cider in hand, wondering if it will ever get easier… this painful, not so random day in October.

Today she wants to be alone. The little energy she has, she reserves for self care and reflection-there is none left for small talk or busy work. The house is too quiet, so she goes to the trees to be one with her thoughts. Somewhere along the paved path, the painstaking sound of pittering feet come running towards her. Two little red shoes chase a round blue ball and she wants so badly to look and smile; but the reality of her loss averts her eyes. Quickly she runs to the car and back to the house. She buries her head in her pillow and then reaches for his box. Tonight, she’ll lay with his blanket and her heart’s exhaustion will lull her to sleep, on this sorrowful, not so random day in October.

The empty crib was the worst…or was it the look on the doctor’s face when she did the ultrasound? No…no those weren’t the worst…It was the quiet of the room. Yes! That awful, awful quiet when he was born, that, was the worst…the deafening silence when all of her hopes and dreams came crashing into a lifeless little lump wrapped in a blue blanket…and her wails filled the space that his cries should have. Breathing is hard right now. Living is hard right now. Mothering is hard right now. As night falls, her exhausted body collapses into a restless slumber and she is sure that she will never, ever recover, from this horrible, nightmare of a day in October.

It’s the lifetime achievements, the milestones and the memories that she’ll never get. It’s the love that she gave, the laughter that she missed and the heartache that is never ending. It’s the name that no one will say for fear of upsetting her and the name that she whispers every night in her dreams. It’s the face only she stroked and the feet only she kissed. The tears that she cries alone and the story that she hates that she knows.

And it’s the lessons that she’s learned and the hands that she’s held…the tears that she has wiped and the ways that she has understood…it’s the tiny gowns that she has sewn and the meals that she has made…it’s the presence that she is and the changes she has made, for every parent who shares her pain…All done in her son’s name.

Opening the box once more, her wrinkled hands carry the tattered blue blanket back to her chair. And she rubs the soft threads between her smooth finger tips as she nods off into a peaceful slumber. And another leaf falls.

“Momma,” she hears…

Dark brown hair and his father’s crystal blue eyes meet hers…and right away, she knows. She whispers his name and he smiles a smile that she has waited a lifetime to see. “I have so much to tell you….,” he says. And tears of joy stream down her face. Hand in hand they walk into the light, mother and son, together again, on this beautiful, not at all random, day in October.