“You are Not Alone”- A Letter to the Person who Finds This Season a Struggle

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Dear friend,

I see you. I see you sitting at the table, hot cup of coffee/tea in your hand…and a pause…that you wish would go away…or last forever. A desire to move on…or to freeze and be lost in thought, anything but to deal with the outside world right now. I see the struggle to decorate, the struggle to participate, the struggle to smile.

I see that you are tired. I see that this is hard.

You are not alone.

This isn’t how you want to be. The rest of the world is happy. The rest of the world is bright and busy…and you are just trying to hold on and survive. You want to feel “normal”. You want to get caught-up in the happiness and the joy…but just when you do…you remember…and then…you’re low again. You’re alone again. You’re tired…again.

Maybe the holidays were never good for you. Maybe they have been a reminder of your trauma since as early as you can remember. Or maybe, they used to be good…and things changed. I don’t know what’s worse- to have never had…or to have had and lost.

Either way, I see you.

And I feel you. You are not alone.

This is a hard, hard time for so many people, myself included.

This is what I have learned:

Sometimes, it never is the same again or the way we wish it would be. We may never get the family, the partner, the wishes that we’ve had for so long. We can’t rewrite history or resurrect the dead. But that doesn’t mean that we can’t find value despite our pain.

Finding a way to give back, attaches purpose and positivity to the season. Years ago, my family and I decided that we’d pick three “give-back” activities every holiday season. Some years I called soup kitchens, others we packed a box of donations for the local cat/dog rescue, and still other years, we sponsored a family in need and added their needs and wishes to our holiday shopping lists. Our longest running tradition is creating gift-bags for the homeless (as we live close to a major city with a large homeless population). The kids decorate gallon-sized zip-lock bags with colorful sharpies and we fill them with things like weather-appropriate socks, hand/foot warmers, non-perishable proteins, sweets, toothbrush/toothpaste, hand wipes, a water bottle, etc. We hand them out on the days leading up to the holidays. And on the years that I am scheduled to work at the hospital on Christmas Eve, I make a deal with the universe that if they don’t call me in to work, I will instead, drive around the city to hand out bags with my children. We never get tired of the satisfaction that we gain in helping others. And the kind words and expressions that we receive in return, make it feel like Christmas morning on the city streets. Good deeds are scientifically proven to improve happiness. With no obligation, no price point to match, nobody over-seeing you…find your own way to give-back…and let the magic happen.

And a smile or a kind word is immeasurable to the person receiving it. Don’t get caught up in consumerism-either feeding into it or fighting it…just be kind! The world needs it!

Rituals and traditions-however mundane or silly they might seem at times, help to improve mental health outcomes. Not only do they give us something to look forward to- the game that we always watch, the recipe or the restaurant that we always enjoy, or the “thing” we always do…but they also decrease anxiety because, whether we realize it or not, traditions within a family/group, are predictable. Whether you like the tradition or not…the fact that you know that it’s coming, makes it less anxiety-provoking than the unknown. So, traditions provide us with a comforting sense of “what to expect.” If you don’t already have long-standing traditions, start them! Let this year be the beginning, so that future years reap your ritualistic rewards.

Self-care is essential- and that doesn’t have to mean the spa… (cuz who has time for the spa this time of year?!) While cooking/creating can feel like a chore sometimes…it can also be a wonderful method of self-care. There is something very therapeutic, very maternal, very practical and satisfying about cooking or creating a gift (instead of buying one) for our loved ones. Consider building a photo book/calendar, painting a canvas or ceramic, drawing, writing a poem/letter, making homemade bird seed ornaments or dog treats or baking for friends/family/neighbors. If it feels pressured or overwhelming, than we’ve missed the point, but if it provides distraction and a sense of accomplishment… then well done! You have experienced self-care, with a practical multi-purpose.

You don’t owe anyone, anything… Ok, so if you’re a parent with small children….you’ll have to pull it together for them. But other than that…work functions, family get-togethers, community events…they will all go-on without you-and you don’t owe anyone an explanation. This season might be self-preservation-mode for you. While the rest of the word seems to be operating in over-drive, what you are comfortable doing, is enough! Create boundaries. Know when you are approaching your limit. It’s okay to say no. It’s okay to “sit this one out.” It’s okay to stay close to home this year. This is your holiday too, protect your heart and your energy.

Energy is precious when you are struggling. When I am in grief, I have learned that I can have one really good, productive and social day. One day when I’m acting like I’m back to my old self and it feels like “the old days”… and then, I’m exhausted. The next day, both mentally and physically, I have nothing else left to give. Learn what your patterns are. If this is true for you…then don’t schedule more than one busy day back-to-back. You can always spontaneously add activities if you are feeling up to it, but don’t set yourself up for failure by committing to more than you are comfortable doing. Ask for help if it’s a matter of carting kids around to activities or other such stops that don’t require your presence. And always make an escape plan- a easy way to get out of a social gathering if you need to.

I see you.

I see the sadness and the longing in your eyes. I see the heartache that feels as though it will last forever. I see the broken promises and the shattered dreams.

I see you standing in the middle of the flashing lights, the blaring carols and the larger than life trees-donned in loud and bright decor…in the middle of lots of happy people.

You feel small. You feel unheard and un-noticed. You see their smiles and you hear their laughter and you want to join them… but tears and the urge to run away feel stronger than the muscles that could turn the sides of your mouth upwards.

You are not alone.

But you are loved and you are important.

I urge you to step out of that busy scene and use this time to discover the real significance of this season. The quiet, reflective season of giving, nurturing, and loving one another. If you feed that…it will feed you in return. And blessing will come, even in your darkest hours. You can do this. You will survive this season.

Wishing you peace, this season…and always! Happy Holidays, from LIFELIBERTYANDLIBATIONS.com

 

 

 

 

 

 

The Trials and Tribulations of Parenting: Learning not to minimize our teenager’s grief

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A couple of months ago, I had an experience, like many parents of teenagers (girls, especially), wherein my teen had a meltdown when the plans that she had concocted at the last minute would not be coming to fruition, due to, shall we say, parental factors.

In other words, despite her “hours of planning”, unbeknownst to us and her best of intentions to make it work, my husband and I, and the other parents said, “Not this time.” Thus, last minute plans led to last minute disappointment. Combine that, with her developmental stage and hormones… and holy moly… WWIII broke out in our household.

All morning she cried and all afternoon, she sulked. When I tried to talk to her, arguing ensued. That resulted in my feeling as though she was being ridiculous and entitled; and it left her, feeling completely frustrated and unheard.

It went something like this:

Daughter: “Mom, I haven’t done anything my entire first week and a half of summer.”

Me: “Yes you have, one day you …. and another day you….”

Daughter: “Two days, Mom!” That’s it! Two days!”

Me: “Well at least you got two … Seriously! It’s been 10 days!”

And then I continued to explain and justify why our decision to say “No” was reasonable,  and why her behavior was out of line. She stormed off again, slamming yet another door.

Then came threats from me and more ineffective communication. And I felt, yet again… that I was failing at this parenting thing.

Was she being overly dramatic and entitled? Yep!

Did I handle things the best way? Nope!

 

While I stewed about how long this was going to drag on and how to resolve this… I remembered a grief class that I had taught just a few days prior.

I teach medical staff who are caring for newly bereaved parents/family how to understand grief and how best to care for families who are being faced with the horrifying reality that their pregnancy will not have the happy ending that they had hoped for. In that presentation is a section of :”What to say” and “What not to say…”. And at the top of the “What not to say” list is anything that leads with “At least you…”-  because odds are, whatever will follow is a statement that minimizes their grief.

And I instantly realized, while on a magnanimously smaller scale, despite my feeling justified and rational in my conclusions, I too had minimized my child’s grief. Not only were our emotional needs not being met during this feud, we were no closer to reaching a resolution to our problem, either. And by yelling and arguing back, I was failing at providing her good instruction and demonstrating proper coping skills for how to handle her disappointment and resolve this problem in the future.

So I started by breaking things down:

Her complaint (minus the teenage drama and hormones):  “My plans were cancelled today. And I haven’t done as much as I would’ve liked to, thus far this summer.”

With this new viewpoint in mind, I completely restructured my communication with her. I went back to her, yet again. But this time, instead of telling her she was wrong, I said:

“I hear that you are disappointed that your plans were cancelled today. And I hear that you are frustrated that you haven’t done more this summer.” For once, she didn’t lash right back… so I continued. “I want to first remind you, that this is what you wanted to do initially- you asked to be able to ‘just veg out and not do a thing’, and I understand that that has changed now and you are feeling trapped.”

The high energy and defiant personality I’d been battling all day… softened and quieted… she was being heard and with that acknowledgement, she was ready to receive more input.

“So, fix it.” I said. “Go get the agenda book I bought you for school, and start filling it in. Figure out what you want to do and when. You can look at our family calendar and add in the things we already scheduled and then see what else it is that you want to do. Look up some recipes that you want to make, think about who you want to see and where you’d like to go- and I will do what I can to make those plans happen for you. But I need to know in advance. When you make last-minute plans, that require the help of other people, it is disrespectful to those people’s plans and lives. You can’t expect other people to drop everything and accommodate you without adequate notice. That is how you change what you don’t like, not yelling at people and disrespecting them-that’s never going to work out for you. And remember, it is always my job to keep you safe and make decisions that are in your best interest.”

That conversation was a game-changer.

Instead of shutting her down… I acknowledged her feelings.

Instead of arguing the accuracy and validity of her point, I offered her a solution.

Instead of copying her ineffective coping mechanisms, I offered her effective ones.

And none of that required that I waver on my expectations or renege on my standards as a parent.

And she really did hear me.

She changed her attitude, went and got her agenda, and filled it in. And we kept up our end of the bargain in doing our best to make those things happen. We shopped for her recipe-grocery items and added her plans to our calendars where we could. Within days her boyfriend was over the house and they were cooking dinner for us all.

It truly was a win-win. Even if it took me a few tries to get it right.

Parenting was one of, if not my greatest life goals. I wanted to be a Mom more than just about anything. And I really wanted to do it well. Great goals aren’t achieved overnight or without a ton of hard work. And being a parent is no different. You wouldn’t expect to hike Mount Everest without training and encountering hardships along the way. You wouldn’t expect to land a dream job as a trained professional without learned mastery and repeated failed attempts. So why do we expect any different when we become parents?

That afternoon, I failed several times before I got it right. And I’ll fail again, I’m sure. Unlike trained professionals, there are no textbooks or manuals customized for your particular child and their particular life stage. But if you keep trying… if you seek inspiration in the world around you… and if you aim to validate your children as the living, feeling, individuals that they are… you’ll be alright.

Hang in there! This parenting thing sure is one hell of a ride… and teenagers are the ultimate rollercoaster! But a few loopty loops and a few warranted screams are survivable, if there’s a safe station and loving arms to return to when it’s over.

 

 

 

Finding fulfillment in the life you’ve been given, not the life you dreamed of…

I always thought I’d be a mother….

I figured I’d be married by now….

I thought he was the man of my dreams….

I never thought I’d end up a single parent….

I wish I had gone to medical school….

I should have followed my dreams, not the money….

My relationship with my parent(s) is toxic….

I’m the only one left in my family….

I’ve never owned my own home….

It was the house of our dreams, and then we lost it….

The diagnosis changed everything….

I don’t like my kid….

When I held my little baby, I never thought she would end up like this….

The stories of regret and broken hearts and a life that is very much not what you dreamed it would be, are as rampant as the perfectly projected ones that wallpaper social media. Scrolling down the endless pages of people’s lifetime posts, we allow ourselves to believe that everyone else’s life is just how they dreamed it would be. Chubby happy faces, world travels, solid marriages, beautiful homes, work and life accomplishments abound…and while we stand there and hold our bag of regrets and disappointments, we fool ourselves into thinking that everyone else has gotten everything that they ever dreamed of. And no matter how many gratitude lists we make, when someone else is living a reality that we wish we had, we carry some level of grief or jealousy or longing.

I know, because I carry quite a heavy bag myself.

I wrote a post two nurses’ weeks ago called the Blessing of Nursing:

The Blessing of Nursing

And in that post, I talked about taking the opportunity to hear people’s stories. I’ve made a habit of this. And I’ve also tried to develop a relationship of trust amongst other humans and to allow myself to be a safe place for people to come to, without fear of judgment or betrayal. Through them, I’ve heard even more stories. And what I have learned in all of these stories, is that despite what we all seem to believe, hardly anyone is living the life they dreamed of and no one is immune to struggle. There is always some sort of caveat, something that didn’t go the way they planned; and no matter how grateful you are for what you have, those losses are still a thorn in our side. And when we see them in others, we are reminded of what we don’t have.

You’re 40 and still single. You thought for sure you’d be married by now. And you don’t know where you went wrong or why you haven’t found your mate. She has a husband she adores and just the cutest kids. It’s the life you always dreamed of. But behind closed doors, finances are so tight, their debt is only rising. Your apartment if perfectly adorned with treasures you’ve collected from around the globe and she wishes she could just take a summer vacation. She’s never even been outside the country and the stress of their finances is a constant strain on their marriage. While she wouldn’t trade her family for the world, the pictures of everyone else’s travels make her itch for adventure and  wonder what would have happened if she had waited a little bit to settle down.

Your grays are coming in heavy and you’re not even sure you own a single piece of clothing that doesn’t have a stain or a hole. Sometimes taking a shower and getting dressed is your greatest accomplishment. Sticky hand prints and spilled drinks surround you and its a daily prayer for just 5 minutes of quiet from the chaos that constantly surrounds you. Being a Mom is sooo much harder than you thought it would be! Her hair is always perfectly colored and her nails are always done. Her house is always clean and the décor is impeccable. And when people ask her if she’s going to have kids, she gives a smile that fools them all into thinking that she’s perfectly content in her quiet and organized life. But silently, she’s been living a 5 year nightmare with infertility. And she’d give it all away … the highlights, the manicures and the cookie-cutter cottage just to hold a child of her own.

Your marriage is constant work and whether its because your husband is tired or works a lot or simply isn’t interested in taking walks, you see the movie-star couple who always do everything together and you wish that just one afternoon, he’d get off the couch or come home early and sit on the porch or take a stroll with you. But that confident and forever hand-holding couple have a secret. Despite her rockstar figure, she struggles with a poor self-image and he’s already strayed from the marriage. Their apparent closeness is really insecurity, fear and an attempt to control, all put under a public guise for perfection.

You’re 35 and wonder if you and your Mom will ever be close. Whether it was because of addiction, abuse, her controlling and difficult personality, or your own feeling that you could never measure up, when you hear other women say, “I don’t know what I’d do without my Mom”, you can’t relate. “There’s nothing like Momma’s cooking!” has never applied to your life and you have always had to hire a babysitter. But other women have come into your life to at least give you some motherly advice and support. And maybe, your girlfriend’s mother who is so wonderfully supportive and takes the kids and cooks, does so because her son or daughter-in-law is unreliable. And her apparent doting is compensation for fear of neglect of her grandchildren.

You were the basketball star growing up and the day your son/daughter was born, you dreamed of teaching him to shoot hoops. And then he stopped meeting his milestones and a lifelong disability presented itself that would inhibit him from ever walking much less running the court. And when your friend comes bitching about running the kids around to practice 3 days a week, your heart aches for the opportunity. But their kid has a paralyzing mental illness that they hide from the world because it doesn’t look good when a jockey has a therapist. And 20 years from now, when all of that comes crashing to an end, you’re wheelchair bound rockstar is gonna be changing the world with his inspirational speeches or formulas for NASA.

Maybe their perfect house, isn’t a happy home….

Maybe one’s world travels are a distraction from the pain….

Maybe that new car was bought with a loved one’s life insurance…

Maybe her perfect kid is fighting a battle even you’d run away from….

Maybe their money came with a price you’re not willing to pay….

Maybe she smiles so that she doesn’t cry.

Sitting on the beds of drug addicts and prisoners has allowed me a gained perspective and empathy and an ability to shed the judgment that I once carried. But learning the struggles of the everyday people I know, who seem to have the most perfectly put-together lives has allowed me to realize that I’m not the only one living with disappointment. And oftentimes, those who have what I am mourning the most, are themselves, lacking the thing I hold dearest. And watching the ebbs and flows of other people’s lives has reminded me that like the tides of the ocean, nothing is promised for forever, and I must hold tight to the things I cherish and be willing to let go of the dreams that were never mine to hold.

I’m sure you’ve all seen the inspirational quote: “Be kind, everyone is fighting a battle you know nothing about.” But what if we took that a step further and in addition to being kind to others, we develop an introspective view and be kind to ourselves.

We all make choices. And with every choice, there are consequences. But sometimes in life, things happen that are completely out of our control. And when those things rip our dreams out of our arms, after we grieve their loss, we must pick our heads back up and regain control of our life, however that life is going to be. A life that is void of the things we once dreamed of, can still be fulfilling. But we must find a way to make it so. If we never take our blinders off, we’ll never see all the other paths around us and the wonders that they can lead us to. If we never let go of the loss, we can never learn to love again. And if we never accept alterations in our plans, we will never relish the new opportunities of our current life.

So the next time you get frustrated that things haven’t quite worked out of the way you would’ve liked, wipe your tears and tell yourself that there is a wonderful life ahead of you, full of surprises and hope and laughter. And after you’ve stroked your grief for a bit, take it out back, put it in the ground and plant it. Let it grow into what it will. And then lift your head and look out to what lies ahead and accept that while this may not exactly be the life you wrote, you were never the author to start out with. Turn the page, there’s another adventure waiting for you. And it will be wonderful, I’m sure of it!

If you like this you might also like:

Giving a voice to disappointment … “Would you do it again?”

The Warrior

“I didn’t want it to be me.”

Cold Soup

Remembering Tiny Feet

Grief

crying angel

Grief is feeling as though you’ve lost your soul; but knowing that without a soul, you wouldn’t hurt this bad.

 

It is a pain that can’t be numbed by any pill, bottle or syringe.

It is a monster that can’t be out-run or out-smarted. And there is no place to hide.

It is wishing that you could die, but knowing that your death would only cause more grief.

It is being lost in a maze of shadows and not knowing where the fuck to turn.

It is being so consumed by darkness that when a sliver of light sneaks in, it hurts your eyes and burns your skin.

It is begging for a way out and being answered with unbearable silence.

It is the weight of a thousand bricks on your chest, making it hard to breathe.

It is the angst of being buried alive. And just talking, you feel as though you are choking on dirt.

It is lead on your feet, making it hard to get out of bed. Every step is painful, every step is work.

And lead on your heart, cold and stiff, making it hard to feel again.

It is panic and feeling your pulse race … and then devastation … feeling so empty that you’re sure your ventricles no longer contract.

It is a flood of feelings and thoughts so overwhelming that you can’t begin to hear all the voices screaming at you … and in the next minute it is an absence of thought and a miserable feeling of being alone.

It is worry and nagging uncertainty for the future and everything you know.

And it is sorrow and an unbearable longing for the past.

It is anger and impossible frustration for a change that will never happen.

It is pain that has no cure and a journey that seems endless.

And

It is evidence that you loved and lived.

It is a sign of your dedication and humanity.

It is the first step in healing … A long and painful process that leaves scars.

Like waking up out of surgery with no anesthesia on board. Or waking up out of a nightmare, still screaming, before you realize it was a dream. But this isn’t a dream.

It’s the hardest and longest journey, but an inevitable one.

It is the opportunity to sit with your pain and commune with your demons. To make peace with your weakness and to allow your eyes to adjust to the darkness.

It is finding solace in your sorrow. And then,

It is finding the courage to start to crawl. It is finding the strength to break the lead away from your feet … and your heart. And to feel the aching relief as you stand and take your first step. It is breaking down the walls and breaking out of the maze of misery. It is allowing light to pierce your eyes and seeing the world from a different view.

In time, your heart will regain a normal rhythm. Your lungs will learn to breathe again. And the light will one day, no longer hurt your eyes or burn your skin. Your steps will lighten and your stride will hasten.

Your memories will remain of a life you once knew, a life that was simpler and brighter and more comfortable. And those memories will both soothe and ache.

And the impression from the lead on your feet and your heart, the taste of dirt in your mouth, the scars from a loss you will never forget, will always be there.

But they will fade with time.

And as they fade, you will realize the strength and the wisdom that you gained, from surviving your greatest loss.

 

Grief is wishing that you never had a soul … but knowing that without a soul, you never would’ve loved. And sometimes, you just don’t know which is worse.

 

Remembering Tiny Feet

trigger warning

baby feet black and white

I still remember my first loss like it was yesterday.

She arrived to the unit in labor, uncomfortable but excited and obviously full term. She had waited a long time to meet this baby and today it was her turn to become a “Mom”.

Placing the monitors on her belly, it didn’t take long for the horror to unfold. It’s a moment every labor and delivery nurse prays she can somehow escape and a moment every mother doesn’t even want to consider to be in the realm of possibility. It’s the OB and the radiologist who make the final determination, but its the nurse, who has already looked into her eyes and regardless of the words she chooses to use, has offered her condolences before the confirmation is even made.

And hours later upon the culmination of her labor, it’ll be the nurse who holds her hand and helps her navigate the greatest horror she’s sure to ever endure. She delivered with me. And no amount of training could prepare me for the expected but absolutely gut-wrenching silence that would occur with his birth. The silence that would make this horrible nightmare come to fruition for his mother and her wails would replace his cries.

He was perfect … absolutely beautiful … his little lips hung like a bow …. and he reminded me of my own infant son when he was sleeping.

Maintaining my composure I handed her her baby and stood with her as she tried to process her nightmare. I marveled at his perfect condition. And when she questioned why he had a blueish hue and why his skin was so delicate, I put on my nursing hat and explained the lack of activity of the heart and the amniotic fluid that he spent his entire life in. I did a good job providing her the care and support that she needed. I didn’t cry. I was clear with the information I provided but I was compassionate. I set up a bath right on her bed and together we bathed her baby boy. Then I helped her dress his limp body in the outfit that she had packed to take him home in. I wiped her tears while I managed her bleeding. I rubbed her back while I monitored her vital signs. It was all just like I had been trained to do.

I was “just doing my job”…. but “my job” was really hard that day. Outwardly, I was just another labor and delivery nurse. Inwardly, I was dying and I just wanted to go home and cry.

A coworker must have noticed my internal struggle when I finally exited the room to begin filling out the dreaded mound of paperwork waiting for me. She came to me and said “Amanda, how are YOU?” And I all I could say was …. “His mouth … it looks just like my son’s when he sleeps.” And I swallowed hard and diverted my eyes.

“This isn’t your loss.”, she said.  She could see my pain as a mother. She could see that every time I looked at that baby boy, I saw my own. She knew the weight of the assignment as a nurse. She knew the sorrow I felt as a mother and the guilt that I felt as a human being because I was able to take my healthy baby home. Despite doing everything “right”, this patient would leave our unit empty-handed and that just wasn’t fair. She knew that. And she knew the challenge that it was for a new nurse to confront death … from every horrendously, inevitable aspect. And she guided me and mentored me and she helped me to become the nurse that I am today.

From that day on, it became my goal to become more comfortable with these situations, to not feel so overwhelmed the next time I was faced with a similar outcome. I wanted to be able to navigate these experiences without being consumed by my own grief. I wanted to provide excellent medical care, know the paperwork and at the same time, not sacrifice one drop of sympathy and compassion for grieving families.

So I started volunteering to take these patients even when it wasn’t my “turn”. And my passion for the perinatal bereavement movement and community grew. I attended conferences and eventually became a certified coordinator. I mastered handprints and footprints, making ceramic casts of all size baby feet and taking photos few people will ever see. I made connections with amazing volunteers who make the most beautiful baby clothes from donated wedding gowns. I’ve attended various events in support of infant and fetal loss and I’m a unit resource for all of the nurses who feel the same sense of being overwhelmed when it’s their turn to say “I’m sorry.” And no matter how many stories I hear, no matter how many tiny feet I hold, no matter how many tears I wipe, it never stops being hard.

There is no sound like the wail of a bereaved mother. There is no silence as heartbreaking as the silence of a baby’s birth. There is no harder place to stand than alongside a sobbing mother as you hold her newborn whose heart no longer beats. There is no worse place to be than in the place of a mother who has lost her child. And there is no greater honor than to hold a baby few people will ever know. There is no greater service that I can provide. And there is no person in greater need of guidance, assistance, nurturing and memory building, than a parent who has been robbed of their child’s life time.

Over the last 12 years as an OB nurse, I have helped dozens of parents through the loss of their babies. I no longer feel as overwhelmed as I did that first day because I know the inevitability that these circumstances have in my field of nursing and I know the importance of the service I have to offer. While I don’t always cry on my way home anymore, each time I cradle a baby born still or born too soon, their tiny feet leave an imprint on my heart and the tears of their family become a part of me. I am forever changed by the fleeting presence of these little angels.

Not all of us are called to do this work. Nursing as a profession and post-mortem care of an infant is enough to break some people. I get that. But as family, friends … human beings, we all have an obligation to these families. We have an obligation to try to understand them and support them to the best of our ability. According to the March of Dimes, 1:4 pregnancies end in loss. You will be confronted with someone’s loss of a pregnancy during your lifetime and you can help.

From my experience, these are some of the truths that I have learned:

  • A mother’s love for her child begins not with the first sound of the heartbeat, not with the first movement she feels, not with the first cry. A mother’s love begins when she is a young girl and she first dreams of becoming a mother. That seed of love then grows stronger every step of the way. Infertility, early miscarriage, death due to severe prematurity or birth defects … they are all painful because they all involve the loss of a dream. The seed of love had already been planted before that mother even considered planning a pregnancy. Every baby is loved beyond measure by the parents who dreamed of their existance, no matter their size or age.

 

  • A mother’s love is forever and no matter the condition or the age of her baby she will see only beauty, tragic beauty … but beauty … even if the rest of the world doesn’t see it; and it lives FOREVER. A mother will never forget the child she lost. Whisking the baby out of the room won’t save her from anything. Pretending that it didn’t happen, won’t fill the void in her heart. Let her hold her baby, dress her baby, read to her baby, love her baby. That baby is her beautiful creation and she needs to embrace it, not be protected from it. Whatever imperfections we as outsiders might see, a mother always sees the beauty.

 

  • While we can’t always prevent tragedy, we can build memories and bonds in the face of tragedy. And these are worthy and essential practices that allow for faster healing and closure. Studies and statistics support this. Allowing parents to have time with their baby – to hold them, dress them, read and sing to them, introduce them to family and friends and younger siblings, allows the parents to feel that their baby’s existence held meaning and that their baby truly had a name in this world.

 

  •  People need to grieve and grief is labor. No one can do it for you. No amount of “It’s time to move on” or family members taking down the nursery and packing away the clothes will hasten the process. Parents need to cry in their empty nursery and pack it up themselves. Don’t rob someone of their grief process. Instead, support them, hold their hand and wipe their tears while they do it themselves. Whilst painful, it is a necessary journey. – This is an important generational change that older generations, in particular, need to be made aware of. We have learned that the “old way” of packing everything away and neglecting to acknowledge the truth was not only un-helpful in “moving-on”, but it was painful to the parents and led to a dysfunctional grief process.

 

  • In an effort to offer comfort, we must be careful not to make comments that are unhelpful or dismissive. This often happens because people are uncomfortable and don’t know what to say. They are often well-meaning in their intentions but the comments themselves are hurtful to the grieving parents. In infant and fetal loss these comments often include: “At least you can get pregnant,” “It happened for a reason,” “Maybe it’s better this way,” “You can have another baby,” “It’s better than having a baby born with problems,” “Maybe you should/shouldn’t have eaten/done that,” “You’re young…there’s plenty of time,” and “You’re lucky to have other children.” Instead, “I’m so sorry,” “I’m here for you,” “You’re a wonderful Mom/Dad!” and even respectful silence are much more helpful and exude your support.

 

  • Different cultures have different rituals surrounding death. While one family may take their baby home and hold a vigil and viewing for their family and friends to meet their baby in their home, another family may feel bound to their religious practice to bury their child within 24hrs and the mother may not even be released from the hospital yet. It is vitally important that these beliefs and practices be protected. Allowing someone to practice their own rituals allows for an inner peace that promotes healing and closure and helps prevent regret. We wouldn’t want an outsider to dictate how we choose to plan our loved one’s final disposition. So, we must be careful not to do the same for others.

 

  • Back to that forever love … intentionally not mentioning the name of a lost child doesn’t save their parents from additional pain. Every day of their lives they remember that child. Mentioning their baby’s name won’t make them suddenly remember him/her or make them sad. They always remember and their sadness is from their loss, not from your remembrance. Instead, mentioning their baby’s name shows them that their child was a person and that they have meaning and worth and are remembered; though the context of the moment should be appropriate and the remembrance should be a respectful one. Reading people’s body language is essential when navigating grief- back-off if they appear uncomfortable; and there should never been any prodding for details. But don’t be afraid to bring their name up, a simple inclusion of their name validates their existence and that is powerful for a parent to hear.

 

  • In life there are things that we can’t begin to understand, horrible things, unfair things. We will ask “Why?” until the day we die and rarely will we ever get an answer. This should not be received as a lesson to fear the unknown but instead as a lesson to relinquish control. Nothing we can do can prevent certain tragedies from happening and we have to stop kidding ourselves that we can control every part of life. As parents we can only do our best, and then, we have to hope that it works out in the end. And if it doesn’t, we need to know who to call. We need to know who will be there to hold our hand and help us navigate and cope. Sometimes the very best parents lose their children. Regardless of the age or cause of death, we need to help them alleviate any sense of guilt and uphold them.

 

According to the March of Dimes and the CDC, approximately 4.4 million pregnancies are confirmed every year in the U.S. About 1 million of these end in loss. 500,000 end in miscarriage before 20 weeks gestation, 26,000 end in still birth, 5,000 die from birth defects, 24,000 infants die in their first year and about 3,700 infants die from SIDS. And while the infant mortality rate in the U.S has dropped by 15% in recent years, it is still ranked incredibly high, at 5.8 deaths per 1,000. This is terrible in comparison to other developed countries.

Infant and fetal death awareness not only shows our community how to provide the support that grieving families need, but it also calls attention to a much-needed area of concern. Awareness yields research and research can help us to understand causes and lead to prevention.

I have never lost a child, and I hope to god I never do. Maybe that’s why my work in the perinatal bereavement community works so well. Maybe if I had lost a child, it would hit too close to home. Maybe it would be too hard to separate my “nurse” self from my “Mom” self. But as long as I can do it, I will. Because those parents need support more than anybody. Because the stigma associated with the death of a child needs to stop. Because losing a baby shouldn’t be “taboo”. And every person, no matter how small, should be remembered. Because the “Mom blame” that occurs every time a child dies or doesn’t reach their “potential” is poisoning our culture and killing wonderful mothers everywhere who are dealt the shittiest hand one could ever be dealt. It’s our job, everyone’s job, to change these ideas and give parents the support they need and their babies the remembrance they deserve.

In October of 1988 President Regan proclaimed October as “National Pregnancy and Infant Loss Awareness” month, because he recognized that these families needed more support and that these babies needed to be remembered.

October 15th is International Pregnancy and Infant Loss Remembrance Day. A practice was started to remember these babies with a “Wave of Light” across the world. On October 15th, from 7-8pm, your time, light a candle and place it outside. The idea is that a wave of light will travel across the world as each time zone takes a turn burning a candle for their babies. You can find more information here: http://www.october15th.com

And if you have been affected by infant or fetal loss and are in need of additional help and resources, there is a ton of help out there and you are not alone. One such site is http://nationalshare.org/online-support/. And there are many, many more. Contact me via this blog if you need further assistance.

I trust my heart will never stops aching for the babies who came but couldn’t stay and the shattered dreams of parents who would’ve given it all for a different ending to their story. But despite the tragedy that is very much a part of my work, there is still hope and strength and so much goodness. With much humility, I thank the families who have allowed me to enter their very precious and sacred space, to know the baby that few others knew, to hear their stories and learn from their grief. I am better because you let me in. And I hope I helped you too. And I thank the workers, the volunteers and all of those who didn’t avert their eyes, but instead sacrificed their own comfort to stop and to listen, to understand, to help and to support. In our weakest moments, it is our pillars who come to stand beside us and hold us up, that regardless of relation, become our family. It is an honor to be a part of the perinatal bereavement family.

Death etiquette tips from a suicide survivor… a personal reflection and four tips on supporting the grief-stricken in an unexpected loss

I remember his death like it was yesterday. My father received the phone call at work. Seeing him pull up and race inside, asking for my mother, pulling me aside, it’s all still emblazoned in my mind. I remember his face. I remember how his mouth opened but couldn’t speak. I remember my mother collapsing.

I couldn’t believe this was happening to OUR family. I remember the stress. There were so many people to call. Where will his body rest? What do we do next?

No one plans to bury a child and especially not like that. The feat that is an unplanned funeral is a tremendous one : Picking out a casket, planning a memorial service – with no previous plan in place and no prior conversation on what his wishes would have been, no cemetery plot purchased, no money set aside …. and all to be done by a grieving family in a matter of days.

No doubt, the exhaustion that accompanies a planned funeral after months of caring for an ailing family member is tremendous, despite the time to prepare. An unplanned death seems to be gifted more energy in the form of a shock response. Perhaps shock is somehow a universal self-protection mechanism that allows the loved ones of an unplanned death to, in an almost zombie like state, prepare such rituals before the grief sets in and they are incapacitated. I remember being in shock.

I remember the people. There were so many people. His funeral line stretched so far behind our limo that we couldn’t see the end of it.

Some came and stayed. They were helpful and supportive and present. They were our pillars.

Some came and left. Worthy supports who served as a meaningful presence who then quietly and respectfully retreated. They were greatly appreciated.

And still there were some who merely poked their head in. Uninvited and intrusive, they served as nothing less than a disruption. Like the onlookers to a car accident, they didn’t bother to help but they wanted to know what had happened. They stopped-in only to peer. They wanted to talk when we didn’t. Twenty years later, I still have ill feelings towards those people. You don’t ever want to be those people … that disruption … or even worse … that blatant cause of pain. Morbid curiosity is never welcome in the presence of a grieving person.

I remember the storm – the non-stop ringing of the phone, the busyness of putting together a meaningful service in days- photos pulled out of basement boxes and strewn across the kitchen table, requests being given and offers being accepted, the opening and closing of the door from visitors. It was a chaos that was as organized as an unplanned funeral could be and it was only made possible by the family and friends rallied to help, and the fact that we were still in shock. I’d venture say it’s probably the most comforting time in the first year. Everyone is together. Everyone has a job. The teamwork is amazing. The unity is powerful. It’s exhausting but it’s done with great purpose and in your darkest moments, you still feel a sense of importance and accomplishment and support.

And then the services are over and people go back home and the empty calm after the storm begins. First, the phone rings less frequently. Then, the meals stop coming. The flowers die and the mailbox is once again filled with just bills instead of sympathy cards. Family and friends have gone back home and back to work and you know you’ll have to too. It seems the rest of the world has moved-on but you haven’t. You go to the grocery store for the first time and you look at all the shoppers and you think … “They have no idea. They have no idea that I just lost my brother last week.” They’re pissed about the long line at the register and you’re just trying to breathe again. Leaving the house and entering a public place, you feel like you’ve been mauled by a bear and no one around you notices that your organs are hanging out and there’s a trail of blood behind you. It was the loneliest time of my life. And returning to work/school was worse. I was ready to escape the oppression inside my home but the outside world was so fast, so loud, so different from two weeks ago. The oppression wasn’t just inside of my home, it was inside of me. And interacting with people was the biggest torture of all. People didn’t know what to say or how to act or where to look. Sympathy was appreciated but it was awkward. . . I wanted to feel normal, but I wasn’t.

Suicide is almost always unexpected and it is always tragic. Despite the progression of the world on many other things, mental illness and suicide continue to hold steadfast their “taboo” nature and it makes people uncomfortable. The grief is complicated because the cause of death and the victim are the same entity. It is also a less common cause of death which some people haven’t encountered on a directly personal level. And yet, the numbers are climbing and people are talking more.

Accordingly in Emory State, 34,598 people commit suicide every year. The suicide rate in the United States is nearly double the homicide rate. How often do you hear the news channels and government officials talk about reducing our homicide rate? And how often do you hear them address our suicide numbers? People who suffer from major depression are 20 times more likely to commit suicide. Treatment for depression is proven to be successful and yet only 25% of people with major depression receive help. Prevention of suicide is the key and organizations like Out of the Darkness are aimed at doing just that. But when it’s not prevented and this tragedy strikes someone you know, prepare yourself so that you can be a real support. If you do, they will never forget you, I promise. It’s time these families and all families who experience tragic loss receive the respect and the support that they deserve.

 

Those who have survived the suicide of a loved one are forever changed by it. So here are some tips from a suicide survivor on how, when faced with death, any death, to provide supportive, meaningful, and respectful sympathy and to avoid ever being part of the uninvited, intrusive and disruptive gagglers. May you give the survivors your best, lest god-forbid, you ever find yourself on the receiving end of the sympathy line, there will be someone there to do the same for you.

1. Never ask someone how their loved one died.

This one is number 1 for a reason … because it’s probably my single-biggest pet peeve when it comes to death etiquette. One of the fastest ways to identify a suicide survivor is, when they encounter a person who has lost a loved one, they will never ask “What happened?” or “How did they die?”. Do you know why? Because after their precious loved one elected to end their own life, they were asked this question more times than they can count. And every time they were asked, they felt violated. They didn’t know what to say. If they caved to the pressure to give an honest answer, it meant they had to verbalize their loved ones tragic end over and over again. And if they didn’t give an honest answer, they felt like a fraud. Worse yet, if their mouth found the strength to form the words “suicide”, the reaction from the person who just inquired was just as painful. Be that reaction one of surprise or shock or embarrassment for asking … it is so awkward and uncomfortable that they never again want to be put into that position. Twenty years after my brother’s death, I am now very comfortable discussing his end. But the uncomfortable reaction that I  continue to get from inquiring minds continues to divert my eyes away from theirs when I satisfy their morbid curiosity and answer “He committed suicide.” And so, a suicide survivor will never ask someone how their loved one died because they understand.

And the truth about this is, knowing the cause of one’s death has absolutely no bearing on your ability to provide support. The only reason you are asking is to satisfy your morbid curiosity. If they want you to know, they’re going to tell you. By asking them, you rip that choice away and you violate them.

Further more, if they answer “suicide” and you ask “How did they do it?”, you have taken that level of disrespect and violation to the umpteenth degree. If you have ever asked someone this question, I hope after reading this article, you never do it again. It is the single most insensitive and offensive question I have ever been asked and not only does it cause a grief-stricken person pain but you lose major respect in their eyes.

And it’s not just suicide survivors that hate this question, it’s anyone who has lost a loved one unexpectedly and tragically. It’s a natural tendency to wonder when a young person or a seemingly healthy person suddenly dies. But imagine for a minute that the person you love the most was kidnapped, raped and brutally murdered. Can you even begin to imagine how you would cope? The fact that the person you love so dearly is not only gone but that they suffered such a tragic end, it would have you utterly consumed by grief, a grief that will never completely leave you. Then imagine, that someone asks you “Oh, what happened?” How would you feel? Well if you can’t imagine how you’d feel, I’ll tell you. It’s a mixture of wanting to cry, wanting to scream and wanting to punch them in the face. And yet somehow our social pressures allow us to feel that our hands have been tied. ” I just told you that my child/my brother/my husband/my mother died! Are you so fucking insensitive that the only thing you can think to say is, ‘How?’ How about some fucking condolences and a casserole!” That’s how you feel. And if they continue on by asking the details, you literally feel like you’ve been violated, like someone took advantage of your vulnerable place and raped you of the intimate details of your loved ones passing.

Protect yourself too. You might be expecting to hear that they had cancer or were in a car accident. Save yourself from that awkward discovery and don’t be that person. When someone reveals that they’ve lost someone, say “I’m so sorry to hear that”, “How can I help?”, “Is there anything I can do?” or if it’s been a while “Wow, that must have been hard.”… and leave it there.

You can ask, “Were you prepared?” or “Was it sudden?” That information can help you to tailor your aid and response without asking for details. But be vigilant in reading their body language and if they signal feeling uncomfortable, back off and give them an out.

Go ahead and ask your intrusive questions to someone else, far removed from the grieving circle who might know … you are allowed to satisfy that curiosity and maybe you want to know so that you can provide more sensitive support. But don’t ask the people who are grieving, it only pushes the dagger further into their heart.

2. Mentioning a passed loved ones name is not only ok, it’s comforting.

Recalling a loved one won’t resurface the pain that you think it will … the pain never really goes away and they’ve never forgotten their loved one. Instead, it provides validity that they lived. Once we are gone, our legacy is the only thing that continues to live. You can help comfort surviving loved ones by helping to build and uphold that legacy and by affirming that you know that that person was important and that you remember them too. Further more, remembering their birthday or anniversary will add you to the “very special friend list”.

3. If you’re going to offer help-be specific, follow through and consider extending the offer throughout the first year.

Anyone who has grieved with any sort of support has certainly heard the words “Call me if you need anything.” How often do you think the grieving persons actually take people up on that offer? Not too often … The reason for that is that they don’t often know what that person’s limits are and what is an appropriate request. Instead, if you want to help, offer specifics: “Would you like me to coordinate a meal train?” “Would you like help compiling photos for the memory board?” “Could I help by taking the kids to school this month?” “Could I help with housework, grocery shopping, walking the dog, shuttling family members to and from the airport?”

Offering assistance in the house and making meals is a great way to help, as is sending flowers and checking in … but don’t forget them when the memorial services are over. One of the hardest things about death is the ‘quiet after the storm’ that I mentioned earlier. In the first week, the fridge is loaded with meals and the phone is always ringing …. which is great! But after a month or two or twenty … don’t forget, they are still grieving. Be a good friend and call, bring a meal by, offer them a day out … especially on the holidays, and around the anniversaries. People process grief at different rates and especially if the death is unexpected, people may not be ready to talk for almost a year. Be the person that’s still there in a year. Be the person who’s still there in twenty years.

4. Don’t look for a silver lining.

Ok that sounds harsh and a bit over generalized. But for the most part, when people have a loss, it’s not comforting to deduce anything positive unless it’s a mere “She’s no longer in pain”…and even that one can be tricky! When you are grieving, outsiders who are looking for a silver lining, often times because they don’t know what to say or they want to “fix”, can choose words that make you feel like your loss is being minimized. When you’ve lost a baby, you don’t want to hear, “You can get pregnant again.” That doesn’t bring back the baby you just lost. When you’ve lost a friend to drug or alcohol abuse, you don’t want to hear “It’s better this way.” You wish they had never been an addict, you wish they had gotten better. When your child is killed in a car accident you don’t want to hear “It’s going to be ok.” They are burying their child…it’s NOT okay! Don’t ever think that your loss is worse than someone else’s because you can’t possibly know until you’ve been there. You’d be shocked to know how many people feel that suicide isn’t as painful as another death because the person committing suicide made that choice. Ummm…hello…do you hear yourself? The person I love chose to leave me … do you have any idea just how fucked up that is for my head to process. And regardless of the cause of death, don’t ever tell a grieving person “It was God’s plan” -or- “It’s time to move on” unless you want to be punched in the face. Instead, often times the best thing you can say is “I am so sorry.”

You can’t make it better. You can’t make it go away. In the face of overwhelming tragedy, there isn’t a sliver lining. Don’t try to make one. Just be there to hold them up. Eventually, the sun will once again rise in their universe and they will remember the people who stood by them in their darkest hour. Superheros don’t really wear capes or throw lightning bolts. They look much more like the giant pillars that held the walls of ancient Roman architecture than they do the gladiators. And they don’t question or barge-in, they bake casseroles, they stop by, they pick up the phone, they remember.