child dying Archives | The ManifestStation

What Grief May Come

October 4, 2019

By Becky Benson

Seven years on and the dreams keep coming. Not with any discernable rhyme or reason; rather they enter my unconscious thought seemingly beholden to nothing other than their own unknowable will. They’ve never been exactly alike, no repeating patterns, and for all other intense and purpose one would assume there was no connection between them at all. It’s the underlying theme that connects them; one of grief and guilt.

It’s the details, so subtle they seem to play no real part in the story working itself out in my sleep-filled mind. So trivial they are of no concern to plot of the wakeless movie my brain projects against the backs of my eyelids. There’s never any alteration due to my actions. After it happens a scene may simply stop, or the story moves along without addressing it again. Only when I wake does the panic take the place of the air in my lungs. And only in my wakeful mind does any of it make any sense.

It’s the only time I dream of her. Never seeing her when I’m in a realm of happiness or a state of content. The dreams themselves only ever spin a terrifying line of questioning that lacks rationale, but presents itself to me as unavoidable reality, nonetheless. Dreams that ceaselessly rip open the innerworkings of my thoughts and force me to contemplate my deeply buried fears.

It could be hours, days or even weeks, and in my dreams I always forget. It’s my fault, and I didn’t do enough. She’s laid there, unable to move the slightest bit or cry out the smallest cry, for who knows how long before I realize I have to feed her. I forget again and again. I never give her enough. I don’t give it to her often enough. I try, but it never works. She’s on the periphery of whatever else I’m doing, and by the time I realize it, it’s always too late. She needed it long before. And then she’s gone.

Over and over again it isn’t enough. Over and over again in my dreams, as it was in life, I couldn’t save her.

Tay-Sachs disease is a genetic condition that is always fatal. Infants who are born with the flawed recessive genes their parents passed on to them will suffer a relentless regression of their mental and physical abilities until death; usually by the age of four. As their bodies shut down they will not develop the ability to walk or talk as typically growing children do, rather they will become paralyzed and blind, suffer seizures, and lose their ability to swallow, and all of their mental cognition.

Feeding was laborious and difficult. Her inability to swallow well consumed my daily routine. If liquids were too thin, she would choke, if her food was too thick, she couldn’t chew. I desperately fed her four ounces at a time, five times a day ensuring I maintained that perfect balance of nutrition, hydration, and caloric density that carried her body to the next morning. Never more than four ounces at a time as she tired so quickly from the effort it took to consume even that small amount. I blended in peanut butter, melted butter, bananas and heavy cream. Scoops of formula and PediaSure accompanied strawberries or chocolate milk. Baby food, step two, not three; three has chunks, were fortified with cereal flakes or Miralax, depending upon necessity.

Feeds could take up to half an hour each time, and even at that, she was lucky she was still highly functioning enough to eat by mouth at all. Lucky she wasn’t aspirating her food, or her medication at that point.

I lived my life, day in and out for her. I happily carved out a routine that was dedicated to her as the center of our world, and our every waking moment was spent making sure she had what she needed to survive for as long as she could.

It wasn’t long enough. She died at the age of three years and four months, and even though I had known all along it was coming it’s something a mother can never truly prepare for. It goes against everything we hold dear and that rings true in nature for a parent to lose a child.

I don’t remember when the dreams began, but they’ve haunted me since their inception. I couldn’t fix her. I couldn’t save her. She was broken in this world. I knew it. It was biology. I wasn’t afraid to confront the reality of it; I just despised the fact that it was our reality. As a mother, facing the impending loss of your child is a soul crushing place to exist.

Grief and rationale rarely go hand in hand, so while I logically know that there was nothing I could do better, and nothing I did wrong, something inside always screams at me, clawing its way to the surface of my conscious thought that it was I who wasn’t enough. I, her mother; the utter failure with the dead child. We have one job as parents; it’s to keep them safe from harm. One job. I couldn’t do it. And in the end, it’s true, I couldn’t. I couldn’t stop Tay-Sachs from ravaging her body, and I couldn’t stop it from ripping her from this world and my arms. Nothing I could have done better, or more, or different would have changed it, but still the dreams come.

They’ve shifted, recently. It isn’t always her any longer. Sometimes it’s kittens. In the dreams they live in our garage. I never quite know where they came from, but sometimes I remember they’re there. So small and unassuming, hiding in dark corners without sound or movement. I realize it’s been weeks since I’ve fed them, given them water. I’ve forgotten their existence altogether, all over again, and I search through the maze of boxes and overflowing items to find out if they’re still alive.

Waking I recognize the garage as the garage of my childhood home, but in the dream it’s the garage in my home of today. It’s cluttered and cramped, and no place to keep a living animal. I never know why they’re there, and I never think to bring them into the house. I just remember, finally, after all seems lost that they need food and water.

A couple of weeks ago a friend of mine posted a question on Facebook asking about what recurring dreams people have. I shared my experiences with this, and how logical me knows it all stems from emotional me’s irrational feelings of failure toward her. I wrote on the thread that I didn’t think these dreams would be as impactful as they are if she were still here. We as parents are given new opportunities each and every day to make more and more mistakes, but when we see our children living and thriving, we know it’s all ok. Parents of loss don’t have the confirmation of their actions having been the correct choices. We don’t have the luxury of tomorrow. Our children are gone, and whether we attribute that to our own actions, or lack thereof, we will never be able to rectify their loss within our hearts.

Predictably, someone else, someone I don’t know chimed in on the thread with some unwanted advice for me. He said, “Becky, I am sorry you are having those dreams. I’m certain once you are able to let the guilt go those dreams will end. Think of the great dreams you could be having about her. Love and hugs”.

I was mildly irritated. It was something so flippantly obviously that certainly shouldn’t deign to be pointed out, especially by someone who likely couldn’t relate on a personal level (I took the liberty of assuming he couldn’t relate first-hand since he didn’t state his own loss of a child). “As if it’s just that easy”, I thought. Of course I need to let the guilt go. I have nothing to feel guilty about, this is just how my particular brand of grief seems to manifest, no matter my attempts to avoid it, or face it hear-on to change it in these last seven years. I didn’t respond. In the end, he was trying for kindness, and I should accept it for that.

I didn’t give the comment any more thought and went about my way. Last night I dreamt that I was with her again. My husband was with us. We had somewhere to go, but I stopped us before we left. Thinking that we’d be out a fair amount of time, I recognized that I should feed her then, before we left. I filled her bottle, expertly mixing the correct proportions of the necessary ingredients and fed her smoothly and easily. When I she was done, I began to mix up some food for her in a bowl. It was soft, but chunky. It needed to be mashed. I mashed it by hand repeatedly, taking great care and concern to achieve the correct consistency. I fed it to her gingerly spoonful by spoonful until she had eaten it all. For the first time, I looked longingly at her and relished in the fact that she was well fed. It felt like an accomplishment. I remember smiling. The was no more of the dream after that. It vaporized like dew in the sunshine.

Perhaps I had sat with this form of grief, repeatedly emotionally beating myself down long enough. Was finally speaking it aloud all I had to do? Was hearing the validation that my guilt was unnecessary all I needed? Will the dreams stop now?

Becky A. Benson lives in Washington State. Read her work on Modern Loss, Brain.Child, Modern Mom, The Manifest Station, her Three Short Years blog, and in the pages of Taylored Living Magazine. She has both written and Spoken for Soulumination, The National Tay-Sachs and Allied Diseases Association, and The Center for Jewish Genetics. Purchase a copy of her memoir, Three Short Years, based on the death of her daughter from Tay-Sachs disease, here or connect with her via Rise: A Community for Women.

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Guest Posts, suicide

Mental Illness is a Terminal Disease

October 8, 2017

CW: This essay discusses suicide. If you or someone you know needs immediate help, please call 911. You can also call the National Suicide Prevention Lifeline at: 1-800-273-TALK (8255) or contact the Crisis Text Line by texting CONNECT to 74174. The world need you.

By Kellie Julia

The picture above is of three of my most favorite people, 2 are gone. My gram died at 93 of natural causes. My son died at 31 and there was nothing natural about it.

I gave my son’s phone away this week to someone who really needed it. It seems like an easy enough thing to do but I cried for hours after. I saved the last text message I had from him which said “I love you too”, that was 5 days before he put a gun to his head and pulled the trigger. That was 5 months ago.

I still wonder what would have happened if I had gotten to his house 5 hours earlier than I did, what if I would have begged him to please hold on just one more day. No matter what I did or said for many years I could not take his pain away. Believe me, I tried. Do I find comfort in knowing that he is free of pain, yes. Would I rather have him still in pain but here with me instead, yes. Do I feel that is selfish of me, yes. Many suicidal people believe that the world would be a better place without them. Is it? No! Mental illness is a terminal disease and it should be treated that way. Continue Reading…

Guest Posts, healing, Manifestation Retreats, Retreats/Workshops

The Aleksander Scholarship Fund.

October 17, 2016

If you want to donate please use Venmo at @Jennifer-Pastiloff or paypal. If you prefer to send check, please email jenniferpastiloffyoga@gmail.com.

or below:

I just got back from leading a retreat in Tuscany and it was as magical as you would imagine. But what made it even more so was that Julia Anderson was in attendance. Thank to you guys!

Let me back up. Julia is a reader of my site and follows me on social media. She had taken my yoga classes in Santa Monica years ago and then fell in love and moved to Norway but continued to follow me online. She posted on my Facebook in August that she needed to reach out to me desperately. Luckily my mom (God bless her) saw the message and told me, so I reached out to Julia. I didn’t know who she was. But I reached out despite having my screaming brand new baby in my arms.

And am I ever glad I did. You know how you have those Sliding Doors moments in life? Remember that movie? Where you realize things could’ve gone another way if you chose this door instead of that door. I mean, it’s always like that in life, but sometimes we are so keenly aware of a parallel life if we had chosen differently.

She was writing to me from the hospital in Norway. I started to read her email and called my husband over to take my baby Charlie.

She was writing from the hospital because she was 40 weeks pregnant and 6 days and was to be induced the next day. But her baby’s heart had stopped beating. I continued reading through my tears. Of course I was in shock that I was receiving this email since I didn’t remember her from my class. She told me that we were the same age, that in fact, we shared a birthday. She said she had met a Norwegian man and fallen in love. She said she was desperate and needed to know if I had any resources for her. She had been following my Facebook page for years and knew what kind of safe environment I had created and she had remembered seeing posts about one of my best friends, Emily Rapp Black, whose baby Ronan died from Tay Sachs a few years back. She remembered that and emailed me, before anyone else, from the hospital.

Standing there with my arms still warm from holding my son, I felt guilty and angry and devastated and I yearned for my boy back and I wanted to fly to Norway and I wanted to build a time machine to go back in time and induce her baby earlier and I panicked and I felt an ache like I had never felt before, an ache so profound that I felt like I was dying. I kept reading her words and wondered why some of us have to experience such pain in this life? I felt like I was slipping out of my body.

Hi Jen!
Thanks for getting back to me so fast. I have been following your posts for a few years. I know about your loss in the past, about Emily’s tradegy, and you write about loss sometimes. I lost my second baby at 40+6 today, less than 24 hours before induction tomorrow. His heart just stopped beating this afternoon. I feel so lost. if you have any advice for me on where to turn, what to read or anything I can do to find peace please let me know..

Binders, Grief, Guest Posts, healing, Little Seal, loss

Cartography for Mourners.

March 2, 2015

By Emily Rapp.

The power of grief to derange the mind has in fact been exhaustively noted.

– Joan Didion, The Year of Magical Thinking

Maps to Anywhere (Numerous)

I hate maps. I can’t read them, understand them, interpret them, or follow them. I have a whole drawer full of maps and pop-up, fold out street guides for various cities, and although I take them with me when I visit these places, I never consult them. Instead I tote them around in my shoulder bag, my purse, my backpack, and ask people on the street for directions.

Map to a Funeral (Hidden)

It is mid-winter in downtown Chicago, and my parents, sitting in the two front seats of a rented mini-van, are huddled over a paper map. Exhaust billows in gray and black streaks past the windows. Commuters look shrouded and miserable, hurrying over frigid sidewalks in the rapidly fading light. I’m in the back seat with my ten-month-old daughter Charlotte, who is strapped in her car seat, babbling and cooing. She doesn’t know this is a terrible blizzard in rush hour, or that someone – my father’s mother, my grandmother – has died. We are driving from Chicago to Pontiac in a storm that feels as thick and relentless as the sound of the word blizzard on the radio, which is turned up high. People are frenzied, worried and watchful, the way people love to be about extreme weather conditions.

My grandmother has died at 93 after refusing food or fluids for two weeks, which is some kind of record. My son, at three years old, lasted only a few days with the same restrictions. Ninety years difference – a literal lifetime – between their ages at death. I struggle to understand what this means or how to absorb it, but generate no cogent thoughts.

Beyond the city limits the interstate is a blur of red and blue emergency lights, car blinkers switching on and off in irregular patterns that compete with the holiday hangers on who leave their Christmas decorations up after the new year. The drivers in the cars stopped on either side of us are reading newspapers spread out over the steering wheels or tapping into their phones, having given up changing lanes. One woman is slumped over, face in her hands, weeping.

My daughter poops her diaper, and I unstrap her from her safety restraints and change her in the unmoving car. My parents are bickering. My brother is waiting at the airport. We’d gone to Soldier’s Field to see the Aquarium, but ended up looking at twenty-year old exhibits of stuffed animals: antelope and bears in permanent yawn, taxidermy tails stalled mid-air. I crammed us all into a photo booth in our last fifteen minutes, because I had an enormous glass of wine for lunch and because we need to laugh.

“We should never have gone.”
“Who could have known we’d get stuck in a blizzard.”

This conversation continues on endless repeat, my parents trading lines between them until I threaten to throw the diaper into the front seat if they don’t change the subject. “Don’t think I won’t!” I shout, and feel like a teenager on vacation with her parents: petulant and trapped, self-righteous and unhappy.

We make it to O’Hare and pick up my brother and my nephew. My dad argues with the security guard, telling her that the airport is designed to be confusing. I tell him this is certainly not true. Through the open van door I toss Charlotte’s diaper into a curbside trashcan.

An hour from O’Hare, far from any lights, wind, snow-thick, swirls white and erratic over the roads mainly clear of cars but still treacherous. My dad drifts between lanes, floats across medians. “You’re fucking scaring me!” I shout when he crosses a road without looking in both directions. My brother glares at me for cursing in front of his ten-year-old son.

We stop at a town outside Chicago, at a sports bar, where six men wearing orange vests sitting at a table turn to stare at us when we walk through the door. We have been in the car for nearly ten hours. When I tell my friend Gina, a native of Chicago, where we ended up for dinner, she tells me she’s lived in Chicago her entire life and I’ve never even heard of that fucking place.

A waitress accidentally spills a beer on my father’s lap.

“This day is shitballs,” I tell him, and hand him a stack of napkins.

“Yep,” he agrees, but he’s laughing. He leaves the apologetic waitress a generous tip.

Map to a Church (Unnecessary)

The route to my grandmother’s funeral service is a straight line from the hotel to the church down a road lined with two-story houses, all fenced yards and large wooden porches, the sidewalks stacked on both sides with fresh snow that blows away in sporadic blasts of arctic wind to reveal weeks-old snow covered in soot, stamped with boot and paw prints and pieces of dog shit. The church is near the town lake, where a group of geese huddle together looking stunned and miserable on ice the same color as the wall of cold sky that seems almost low enough to touch the frozen water. I think they’re geese. I know they’re not ducks. I’m not a poet. I don’t know my birds. I don’t know an elm from a poplar. I’m a little bit better with flowers. I know a blue spruce because there was one in my yard in Santa Fe, and it was the one pop of color on the gray winter day two years ago when my son died.

“Don’t they migrate somewhere warmer?” I ask. “Those geese or birds or whatever?” Nobody answers me. At the church, my brother and his son leap out of the car and sprint across the parking lot. The frozen lake reminds me of another frozen lake in Minnesota where I spent one weekend listening to Joni Mitchell records and writing bad poetry (I didn’t know my birds then, either) with a group of college girlfriends; another frozen lake in Wisconsin where I watched five continuous hours of CNN on the first anniversary of 9/11. Both events seem whole lifetimes ago, memories connected to my current life by delicate filaments that show their strength in the strangest moments.

I pick my way across the parking lot with a bundled Charlotte in my arms. Inside people are milling about in front of a funeral board: pictures of my grandmother as a young girl on the farm, on a horse, in the early 1940s with my father in a cute suit, standing in front of a flat white house, with her parents, who are expressionless and shaped like barrels.

My grandmother was cruel to me, and I am not sad that she is dead. I feel like 93 is a pretty good run. She was rarely sick. She had friends and was comfortable.

My dad speaks first, and he tells the congregation that his mother once told him that he could have searched the whole world over and he never could have found a better wife. This is for my mother, to whom my grandmother was also cruel.

The minister gives a dorky eulogy about salvation that doesn’t happen “in the big city,” but instead in “a little church in the prairie.” His language feels vaguely pornographic to me, all this talk of being “chosen” and “choosing,” and my grandmother saying yes to God, again and again she said yes. I can’t stop thinking, sitting in the back pew nursing my child where nobody might happen to see my breast, that there’s no way this guy voted for Obama.

The only time I feel moved is when my second cousin’s husband sings a solo, halting and occasionally off-key version of Beautiful Savior at the lectern. He struggles through all of the verses without looking up. In front of him, on a table decorated with flowers, my grandmother’s ashes are in a simple black box.

After the funeral we eat fried chicken in the church fellowship hall. My grandmother’s sister introduces me to a man who is clearly suffering from dementia.

“This is Emily,” my great-aunt says. “She wrote a book about her baby who died.”

“Who are you?” he asks. “Did somebody die?” He looks around the room. Someone is slowly releasing a Jell-O mold onto a plate in the kitchen. A woman in an apron dumps more chicken into a bowl on the buffet table.

“My grandmother died,” I say. “Lois died.”

My great aunt is frustrated. “Listen,” she says, tapping the table in front of the man.

He looks at her, then at her hands. “Yes? Who are you?”

“I’m Emily,” I say.

“She’s a writer,” my aunt continues, “and her first book is all about…well,” she says, and flaps her hand in the air. “You tell him how you was made wrong.”

death, Grief, Guest Posts, healing

The Hole.

January 25, 2015

By Mandy Hitchcock.

The four of us sit at the breakfast table in the sunroom. We’re still in our pajamas. The morning sun pours in, and I blink rapidly at the sunbursts in my eyes. It’s a hot and humid late August day, but inside we are cool.

Our three-year-old sits between Ed and me, too big for a booster seat anymore but too small still to reach the table from a regular chair, so he is on his knees, carefully unrolling one of the freshly baked but entirely canned orange cinnamon rolls his dad has prepared us for breakfast. He finishes unrolling it, and now that it’s a long boring strip, he decides that it’s no good and hands it back to his dad. I take it, roll it tightly again, and offer it back to him. “Is that better?” I say. “Yeah!” he says gleefully, grabbing it and finally taking a bite.

On my other side, our newly minted one-year-old daughter perches in her high chair, working her newly minted pincer grasp to pick up the tiny pieces of cinnamon roll I have torn up for her to eat. We were so much stricter with sugar two kids ago, but I’m as unreasonable as ever about choking hazards. She’s clearly frustrated with the small pieces, shoveling them by the handful and squawking at me for something more substantial. Or maybe she wants milk. It’s still tough to tell at this stage.

It’s these moments—these moments when life feels so very close to being absolutely perfect, almost maddeningly close—that I am stunned, again, by how absolutely imperfect, how irrevocably and horribly wrong it all is.

It’s in these most ordinary-extraordinary moments, these moments that seem to happen every day and yet almost never, when she is most absent. As we four sat, savoring our rare vacation treat of canned orange cinnamon rolls, she was so missing. So missing that I couldn’t help but imagine her there, even almost see her, on the other side of the table next to her dad, squinting at the sun in her eyes. Gangly and knobby-kneed now, with not the slightest hint of the chubby cheeks that graced her sweet face when last I saw her. Those exquisite knees pulled up tight and tucked under her nightgown. Hair maybe long enough at last for a braid but still so wispy that the braid can barely contain it. A five-year-old kid. “Five-and-a-half, Mom!” I can almost hear a small but indignant voice say. “Mommy” would surely have given way to “Mom” by now.

She’s right there, and like the sunbursts in my eyes, I can see her only until I try actually to look at her, and then she glides away.

It’s been four years, four months, and seventeen days since my daughter Hudson died from a sudden and incredibly aggressive bacterial meningitis infection. She was seventeen months old. One day, she was an otherwise healthy toddler with what appeared to be an ordinary toddler virus. The next day, she was fatally ill. Three days after that, she was gone.

Jen Pastiloff is the founder of The Manifest-Station. Join her in Tuscany for her annual Manifestation Retreat. Click the Tuscan hills above. No yoga experience required. Only requirement: Just be a human being.