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death

death, Guest Posts, Young Voices

And Then I Remember What You Said, a Letter to My Brother

December 31, 2016
lucky

Note from Jen Pastiloff, founder of The Manifest-Station. This is part of our Young Voices Series for Girl Power: You Are Enough. We are always looking for more writing from YOU! Make sure you follow us on instagram at @GirlPowerYouAreEnough and on Facebook here.

CW: This piece discusses the aftermath of suicide.

By Emma Tait

December 31, 2016

Dear Ollie,

I know you know this holiday season is hard for me. But still, I need to tell you how I’m feeling, how I’m feeling about how the holidays this year, the third year since you have been gone. Please don’t take this the wrong way, I know you are looking out for me, in the good big brother kind of way.

I am always catching glimpses of you out of the corner of my eye, seeing men that look just like you, sometimes I even hear your voice. Every time this happens my breath catches in my throat and for a split second I glance around hopefully, as if I live in a different world where there is a possibility of us running in to each other on the street on our ways home from work. In a parallel reality this would be our life. You would have lived. You would have stayed in Vancouver and we’d see each other all the time. This parallel reality still lives in my head, and sometimes when I “see” you I pretend with all my hear that it is so. Continue Reading…

Child Birth, death, Guest Posts, No Bullshit Motherhood

A Wave of Light

December 23, 2016
light

tw: infant loss

By Alison Baron

I am 1 in 8.  I am 1 in 4.  I share a badge with two clubs.  Two clubs that no one should have to be a member of.  Infertility brings feelings of defeat and grief.  Infant loss brings a whole new meaning to bereavement and grief.  Each October is Infant Loss and Remembrance month.  In honor of all the mamas who are unfortunate to be a part of this club I would like to share my story.

Santiago Jose Perez-Barron was born on July 7 at 8:36 a.m., weighing an adorable 7 pounds and measuring 21 inches in length.  He had chubby cheeks and his mother’s nose.  And although he struggled a bit right out of the gate, he persevered like a champ, made huge improvements in his first 24 hours of life, and was even breastfeeding well during his first day. Continue Reading…

death, Guest Posts, healing, motherhood

Lying To A Stranger & Then Finding Love: A Tale of The Interwebs & Connection.

August 17, 2016

Note from Jen Pastiloff:

So I received this message on Instagram from a woman I didn’t know the other night. My community there is beautiful and active. I had posted about an opening in the “Writing & The Body Retreat” I do with Lidia Yuknavitch. For those of you who don’t know Lidia (and you should! you should!)- I call her my “wifey.” She has written life-changing books, given a bring-you-to-your-knees TED talk (watch it here) and teaches writing (and also, basically, how to just be a free AF human being.) If ou follow her on Facebook, you know what I mean. People live and die by her Facebook updates.  Her memoir, The Chronology of Water, starts with the loss of her daughter, who was born stillborn.

Read it if you haven’t yet. (Thank me later.) We do have one spot open for next month, otherwise catch us in Portland March 15-17 or take one of her amazing online courses. 

That book (and Lidia) changed my life, and I don’t say that lightly.

So I posted on instagram about our retreat and I got this message after someone had commented that Lidia’s book had really helped her. Her brave message to a stranger moved me tremendously.

Here it is:

“Dear Jennifer, I’m not sure you will read this and I’m not sure I will even send this but I need to get this out, either way. I want to begin by saying that This Instagram thing is so strange and so beautiful and so weird. Connecting with strangers and the desire to be “seen” and “heard” through use of language, likes and emoticons (our modern day hieroglyphics) It’s by explaining this that recently I have been leaving comments on your pages beneath the beautiful and raw as red meat posts on Motherhood.

You have written back a few times and I felt less alone. And inspired. And when I received your words, my heart bloomed and gushed. That’s the beauty of social media. No, I’m no stalker. Or a weirdo (only stalkers and weirdo’s say that, right?) But I’m trying to get somewhere in explaining all this with you.
You probably don’t remember, as you receive so many messages, but yesterday you posted about your friend Lidia Yuknavitch. Now here’s the weird thing part of social media.

I wrote beneath your post that lidia’s work, the Chronology of Water helped me through the time in my life when I grieved for the loss ofmy own daughter at birth.
I’m ashamed to say this but that was a lie. I have never read any of Lidia’s books. I have wanted to. I’m going to. But I haven’t. I wrote that because I needed someone to catch that memory. I wrote that because it felt scary to fling it out there into the dark void of Instagram and for my pain to be caught by your kaleidoscopic care. It’s bizarre I’m telling you this.

But that’s it. In a nutshell, I lied to you, a stranger who I read about on Instagram, me who you don’t know. Me who is writing this Unshowered and sweating with an hour for myself before my husband comes back with the baby. And this ridiculous lie was on my mind all night, and I didn’t need to tell you because there’s really no need and you won’t give a fuck anyway but I lied that I had read your friends book, your friend who has suffered a similar loss as mine. A lie in order to connect.

Actually, not a lie to connect. But a lie because I’m so fucking lonely in my grief and in motherhood and finding myself within the thicket of sleep deprivation and deeply caring for my boy.

There I said it. I was vacuuming and I added this on.

Like you’re listening. Like I’m having a conversation to myself.

But maybe you’re there-“

——–

I told her I was. There. And that I was listening.

Connection is real- however you get it. However you find it. So we started talking and she sent me the following essay about losing her daughter. And I think you should read it and let her know in the comments because I do believe connection is everything. As Brené Brown says, we are hardwired for connection. That is at the core of all the work I do and why I am started an online course experience next month. To simply connect and be more free, to take up space in the world, and to share our stories. Like this one:

By Katherine J.

It was backpacking through China with my husband that we came to know I was pregnant. The little stick I peed on told us so. And then a second one told us the same. I was so eager to return home, to care for myself, to prepare for this little being. My husband was ecstatic. Very early on in our relationship, we had always spoken about the children we would have together. And here we were.

Once back in America, I felt safe and ready to nest. This feeling would not last long. The first blood test and ultrasound revealed that my baby was in some way “abnormal”. What that abnormality was, they did not know and it could only be revealed through more thorough testing. It took weeks, months, of waiting, waiting, always waiting for results.

They told us over the phone. Our baby was diagnosed with a major heart defect. And one that could not be fixed. They would not operate at birth. My baby was deemed incompatible with life. I kept repeating the words over and over in my head, tapping each syllable onto my arm, the kitchen counter, my coffee cup.

In-com-pat-i-ble-with-life.

That man over there yelling at his wife, is compatible with life. That child eating ice cream, is compatible with life. That flower, that dog. And aaaaaaall the other babies. Compatible with life.

I thought of my daughter’s heart. I thought of her tiny heart that would not function. Never ever. I thought of her tiny heart that was rushing like a freight train within me. I heard it once. And then I asked to never hear it again.

You see, she was thriving within me. Growing, and moving, and swishing and she was all elbows and legs, kicking softly.

When we were told the diagnosis, I was a little over six months pregnant. But I did not stop being a mother. I sang to my baby, I danced with my baby, I played music to my baby. My daughter. Through my womb, I sang to her lullabies, I let her hear the sound of the ocean, the sound of water trickling in a fountain, I let her feel the cool rain as it fell on my belly, I crushed crispy fall leaves near my belly in the hopes she could hear. I gave her flowers, her father played songs on his guitar and he whispered love to her and we touched her through my belly- tickled her.

It was time to let her go. It was no longer safe to keep her, for me or her. I gave birth to my daughter, in a hospital. I was induced. I went through contractions and everything else that comes with birth. Only I knew my daughter would not be born alive.

My husband never left my side.

During labor, I saw four people dressed in white in the corner of the room. Later I asked my husband who they were. I thought they were doctors or medical students, observing. My husband said besides himself and me, there were only three people in the room- two nurses and the doctor. I’d like to believe they were protectors or, yes, angels even.

She was born so peacefully. With the softest smile. Breathless.

We held her. She was weightless. Already of the stars. Her gentle fingers around my thumb. Still warm. Then, stone cold stiff.

I gave birth to death. The sweetest death.

My daughter. Sunshine. That is her name. That is what she was.

And is.

All other names were too earthly for her. She was bigger than life. And so free. She knew only love.

“You are my Sunshine, my only Sunshine…”

The aftermath was grueling. An unbearable grief.
 And when the milk came in, it was as if my breasts were weeping. And at sunset, and sunrise, it was as if she was dancing and laughing across the skies, finger paintings for Mom and Dad.
 At night, I would wail.

At night, I would walk around the rooms of our apartment, searching for her. During the day, the Southern Califonian sun was relentless and there was no hiding from the red raw pain of my post-partum body under the light of the stark sun. I wanted to run into the rain and drown in it and pull the dark sky over me and hide. The names of the days no longer mattered. Time felt like one long Monday. For a long, long time.

Until, he came along. He, who began to heal what felt broken.

A son that is sleeping beside me as I write this.

A son that giggles and breathes and poops and crawls and wriggles and reaches for me in the night.

A son that points to the moon.

A son with a heart that beats like a jungle drum.

Katherine J. is a writer and yoga instructor. She lives in California with her husband and rambunctious one-year-old boy. Katherine is not on FB so please leave her a note below.
Join Jen Pastiloff for an online experience called "Don't Be An Asshole: How to Forget Perfection and Be Human." Email, prompts, a secret Facebook page, videos & connection. $50 for the first 40 to sign up & then $65. Click photo to book via PayPal.

Join Jen Pastiloff for an online experience called “Don’t Be An Asshole: How to Forget Perfection and Be Human.” You will receive emails, prompts, a secret Facebook page, videos & connection for 4 weeks. $50 for the first 40 to sign up & then $65. Click photo to book via PayPal.

 

 

death, Family, Guest Posts

Frosty Mauve

August 14, 2016
mother

By Kim Derby

The silence hits me in the face when I walk in. Free of beeping and flashing bright lights, her hospital room is nothing like what you see on TV, the monotonous drone of machines sprouting tubes, blaring alarms. Instead it’s stillness, and the creak of the door as it closes behind me. Daylight streams through a window across the room, lights up her face. I move toward the bed, cautious as if she had a virus I might catch.    

Hi Mom. It’s your daughter. I’m here.”

Her mouth is open, slightly ajar. A lip-gloss sits on the table next to her. Someone must have applied it recently because her lips glisten. I touch her cheek with the back of my hand. Ice. And I pull the blanket up around her neck. Hold her hand, I tell myself, but she’s tucked tight under the bedding. Swaddled. I hate myself for being too freaked out to reach under and take her hand. I reach for her cheek again, rub it softly with the back of my hand. Her 76-year-old face is bare, free of mascara or makeup. It glows, smooth like un-worry, free of wrinkles, contempt or scorn.

“Mom, your skin looks really good.” I think she’d like to know.

Saliva collects under my tongue and I’m glad I haven’t eaten in three hours. I step back from the bed, swallow. I think I’m going to be sick.  Continue Reading…

death, Grief, Guest Posts

A Choice of Wood

April 25, 2016
death

By Whitney Fleming

“I can’t do it. I can’t go into the room with all the caskets. I can’t do it again,” she told me.

“It’s okay, Mom. I’ll take care of everything,” I stated easily, as I knew that my father wanted to be cremated, which reduced the decision-making burden. Although I was the youngest in my family, the responsibility would be mine. My brother and sister had their children to manage, and I was the most involved when it came to my dad’s care.

“Just do what you think is right. I just need you to take care of it.”

My mom wasn’t much older than I was when she buried her own mother, along with three teenage siblings. They died in a fire started from bad electrical wiring in their dilapidated Ohio farm house. As the oldest of eight, she managed the burial arrangements, and selected the caskets for her teenage brothers and sister. The act of selecting small coffins for young people yet to reach their prime crushed her to the core. It was a weight she carried around with her each day.

She was the strongest woman I knew, but even she had her limits. Continue Reading…

death, Guest Posts

Letting Go

April 22, 2016
pet

By Liane Kupferberg Carter

I get the news moments before my 21 year old autistic son Mickey gets home. The biopsy is back: our fourteen year old cat Fudge has lymphoma.

I still manage to greet Mickey cheerfully when he walks through the door. But he knows me too well. “Do you have sad news for me? Is Fudge dead?”

So much for the myth that people with autism have no empathy.

We try a course of chemo. She responds better than we expect. But late one Sunday night, Fudge suddenly pees on the carpet. She has never done this. She staggers, and looks spacey. Something is very, very wrong. When I pick her up, she is limp.

“Is Fudge dying?” Mickey asks. Continue Reading…

death, Guest Posts, Young Voices

On Saying Goodbye And Eating Chips

March 9, 2016
death

Note from Jen Pastiloff, founder of The Manifest-Station. This is part of our Young Voices Series for Girl Power: You Are Enough. We are always looking for more writing from YOU! Make sure you follow us on instagram at @GirlPowerYouAreEnough and on Facebook here.

By Haley Jakobson

On the day your grandmother is dying you will eat a bagel with cream cheese and salmon and the guy behind the counter will misunderstand your impatience for rudeness. He doesn’t know you have to go home and kiss her cheek. You cry in the bodega and you take an Uber all the way to Westchester because your Dad says you should.

You get there and you climb into bed with her and all the fear you had before is gone because you need to take care of the woman that is the reason you exist. You hold her and press your face into her back and you put a cold wash cloth on her forehead and you don’t hide from her dying anymore. You cry into her pajamas and you feel how warm her body is, like a child, and you just keep pressing your hands into her. Every time she opens her eyes, wide and blue and scared, you tell her that you are there and when you listen to your own voice it sounds so strong and resilient and there is no fear.

You love her and she loves you and this will not go away even when she is not there. Her eyes are so blue, like this cleansing force of beauty, a color of simple beginnings and quiet endings and still water in between. Every time she realizes it’s you she says hi and you say “I love you” and she says it back. It’s all love. And when she cries out in pain you don’t deny it, you affirm it, you affirm her and everything she is going through. This is real, and it has been so elusive, this cancer, for so long.

She asks to put her head on your leg and you let her, and you help her sit up and stand up even though you know she’ll want to lay down straight away. Put the blankets on, take them off. The nurse says the pain is internal, it won’t go away from switching from her left to her right. You know she’s speaking your language now. The sickness has turned to violence inside her, like demons and monsters and bad, bad energy. The medicine is poison and life is leaving her. Continue Reading…

death, Guest Posts, Truth

Some Thoughts On The Day John Lennon Died

December 8, 2015

By Jonathan Jones

“Last night I dreamt I went to Manderley again.” Whenever I think of the opening line to De Maurier’s  Rebecca, I’m aware of a telling gap, not only in my reading, but also my own memory. It has always managed to evoke, even echo a thought I often had as a child on waking, that it was still dark outside.  A news report coming in, confused by static. Maybe a radio in another room, light downstairs.  It was like at first, nothing had happened, a recurring dream that spoke with a voice both present and at the same time absent. My father told me once that the name he initially thought he heard when he turned on the news was “Lenin.” Apparently it took him a few moments to realize, it wasn’t the Tsar’s Winter Palace going up in flames. All that chaos and violence and shooting and the promise of a new world waiting at the end. I sometimes wonder if he remembers telling me that story, waking up one winter morning to a different name, the definitive end of another era.

The first picture I remember seeing of John Lennon was the Double Fantasy album cover. It’s an image that seems to float around my childhood with a vengeance. The day Lennon died I must have gone to school, although I don’t recall any special announcement at assembly, or anything that stands out to tell me I was present that particular day.  All I know is at some point I was in bed and I knew it was still too early to get up, because it was still dark outside. Beyond that, only my parents movements below me and the front door closing, as my father left for work. It was years before I realized what had happened and by then it was a memory fashioned by snippets of TV and the film footage, flaky in its original transmission. But a memory nevertheless, which had nothing to do with the real memory of my dad closing the door, as he left the house that day.

I was five years old at the time and to be honest can’t say for sure, what my own feelings were on the subject. It’s all too easy to suggest our earliest memories reveal some telling inner glimpse into the adults we grow into. Yet when I think back, the years between my fifth and fifteenth birthday rarely found a clearer point of reference.  The Eighties were too bright, too colorful  by comparison to that  day in December. T.V. that brought us up on game shows and  cheap nostalgia.  Back then trying to teach myself to whistle Jealous Guy, I knew the tune was how I felt for a long time, a permanent angst for the same city he came from. It was a post-lapsarian landscape I remember as a kid, muddy brown, tarmac cracked, whole streets abandoned and boarded up. The docks still so majestic and so tragic in their derelict hollows. A city I only knew from a distance, with its accent and its humor and its tough working intellect. Continue Reading…

Compassion, death, Grief, Guest Posts

Out of Death, Something

November 22, 2015

By Mark Liebenow

In late April we gather our dead and cry. For some it has been a year since our lives were ripped apart, for others barely a month. Emotions are on edge.

We are the families of those who died and donated their organs, and we have gathered at Chabot College in Northern California to honor our loved ones. My mother-in-law Marjorie has come with me. She is doing better after burying Evelyn, her youngest child and my wife, and is back to running the office of her retirement community.

I think of Tom Hanks in the movie Cast Away. He went to college here at Chabot, and there is a life-sized cutout of him in the lobby. He plays a man who struggles to survive physically and emotionally after his plane crashes in the Pacific Ocean. In one scene, before learning how to make a fire, he eats a raw, gelatinous fish. The look in his eyes as he chews is of a person wondering what’s the point when it’s unlikely he will ever be rescued. I know that look. When he gets back home years later, his wife has remarried, so he begins a new life with what he has left. I sense he will be happy, and wish that life was like it is in the movies.

Reg Green is the main speaker and talks about the desperate need for organ donations. The wife of my friend John was one of those who died waiting. In 1994, robbers killed Green’s seven-year-old son, Nicholas, when the family was vacationing in Italy. He and his wife donated their son’s organs to seven Italians. Because of their selfless act, the organ transplant movement finally took hold in that country. Donations doubled and thousands of people are alive because of them. A movie was made about it, Nicholas’ Gift, which starred Alan Bates and Jamie Lee Curtis. “Each year in the U.S.,” Green says, illustrating how often even the very young die, “five thousand families donate the organs of a child.”

After his speech, the smiling face of each donor in a time of happiness fills the large theater screen, and a hush settles over us. Music fills the auditorium as image after image bring back the childhood joy of Danielle, age fifteen, red bandana on her head; Dexter, two years old; forty-eight-year-old Bill with a Fu Manchu moustache; Maribel, a young mother dead at twenty-six; three-year-old Eddrick in his new sweater; nine-month-old Alexandre in knitted cap; and the photos and names of one hundred and forty others, including Evelyn’s, her face shining with hope.

Ev died in her forties of an unknown heart problem, and I think of the dreams we had for our future that now lie in ruins. In the memorial booklet I read the words I wrote that begin: “Evelyn’s soul was sweet like dawn in the Sierra Nevada. She was intoxicating like alpine air. The light in her eyes illuminated the dark paths through the forest of my heart….” Continue Reading…

death, Family, Grief, Guest Posts, loss, motherhood

Black Lace: On Music, Motherhood, and Loss

November 18, 2015

By Geri Lipschultz

Nothing is sexier than black lace, nothing more deadly.  When it’s cut in a circular shape, one slips the bobby pin inside, fixing it there into your hair.  With the black lace thus covering, you can show respect upon entering a synagogue or a funeral parlor where your mother is, before she will be buried.  It may only be nine months after your father died that she developed the cancer, less than three months before it would kill her—and in between that time, that is, in between the two deaths, you, at forty-six, would deliver a girlchild in darkening November. With the lace in your hair, you are holding the girlchild in your arms.

My daughter’s love for me was palpable.  A friend had seen her spirit when the baby was in utero.  Her shade was long, Tibetan, a tall thin dark man who sat on my shoulders and wrapped his legs around me, put his head upon my head. Cradled me. Farfetched or not, this was the feeling of this baby. Loving, attached, but withdrawn among strangers, whereas my son would work to catch the stranger’s eye.  Born eleven years before, my son had colic. I held him, and he cried. Even his entrance into the world came with a face of doubt, a scowl of woe.  He was covered in meconium, an expression of his discontent?  My daughter swam into life, looked up, surveyed it, said it was good.  Did my daughter know she was conceived in wedlock?

I was already married a year when I found out I was actually pregnant, for the second time, at forty-six, and I called my mother to tell her this.  She expressed something that sounded like horror.  I asked her if she was horrified, and she said that she was worried.  I was too old.  She was in her seventies.  The other grandchildren, my sisters’ kids, were teenagers, mainly.  My son, David, was ten.  He would be eleven when Eliza was born.  I told my mother to please keep her horror to herself.  I told her I was thrilled, that she should pray for a healthy baby, preferably a girl, for me, and if she was worried, to please not inflict it on me.  It vaguely reminded me of my writing, the once or twice I’d shown her what I’d written, her inability to take it in, her tendency to read too much into the stories.  I wrote stories, fiction. The lace of words, of black on white, the way stories gush up into images. You turn something terrible into something beautiful. I made things up.  If it was good I made it bad—some bit of salt or pepper or honey to change the flavor. If I told the truth, I would feel guilt, but the truth can hide behind a lie. It can light up the sky. For a long time after my mother died, I felt the guilt of someone who did not do enough because she could not cope, could not take in the loss. I was in the thick of motherhood, myself.

Black lace is what’s left when the mother is gone. A string of memories, a household full of items, tangible and laden and one day all of her furniture and even her wastebaskets would be sent to your house, because you were the one without a real job, just adjunct teaching and the pittance you made from your writing. Not to mention the insecurity of your marriage. Sometimes, if you could, you would take a match to the world. Sometimes it felt as if someone had. Can you admit the waters of grief? Stunned, after your mother’s death, you walked away brittle, unfeeling, protective, pretending. This has become your way with any kind of loss, until music arrives with its stream of the eternal, its messages, its images, its notes and rests and etchings. Continue Reading…

Addiction, death, Grief, Guest Posts, loss

Above The High: Coping With Addiction And Death

November 17, 2015

By Nancy Arroyo Ruffin

The first time I remember experiencing death I was three years old. My uncle Louie lay in a casket at the Ortiz Funeral Home wearing a light colored suit; it could’ve been white, beige maybe. His afro was neatly picked and in my three year old mind he appeared to be sleeping peacefully. That’s the thing about death, to the deceased it is peaceful, and to the ones left behind it’s anything but. To those left behind, the haze of losing a loved one, which feels like a searing mass of heat injected deep into the veins, seeps into everything making it difficult to focus on anything but the grief.

From my recollection, the funeral home was a dreary place, old and decrepit, like an old lady who had spent too many years outside of herself watching her life pass her by. The red carpet in the viewing room was ragged and dirty and the lighting, though warm, was not inviting. It was a place that bid farewell to too many lives taken before their time.  Exactly one year before on the same date, my maternal grandfather (his father) lay in a similar casket sleeping peacefully. He was in his 50s.

I can’t recall if I understood then that it would be the last time I’d see my uncle. I don’t remember if my parents explained to me the finality of death and what it meant when I heard family members say “at least he’s with his father now.” These are not things parents are prepared to talk about with their 3 yr. old. I think about my own 3 yr. old daughter and how I would explain death to her in a way that she would understand and I don’t think she would.

What I do recall about my uncle however are the times when he was vibrant and full of life. I remember how his eyes shone with happiness at the mere sight of me, or when he’d take me to the park and proudly tell everyone I was his daughter, even though he never had children of his own. He was young, handsome, and full of unrealized potential.

When someone dies we try our best to remember them, their great qualities, and how they made us feel. We try as best we can to remember the details about them like their scent or their energy as they enter a room. We try and recollect the curve of their mouth when they smile or the sound of their laughter, or the way their eyes say “I love you” when they look at you. We attempt to remember how their arms wrapped effortlessly around us or how their mere presence brought peace, happiness, and comfort. Continue Reading…

death, depression, Grief, Guest Posts

Dead Space

November 15, 2015

By Betty Jo Buro

I chew the inside of my right cheek while I loop from closet to suitcase.  Jeans on the bottom.  Pajamas next.  I’ll save the dress for last. What a relief it would be to sob and fling my clothes in a twisted heap.  To keen, like the Irish women in the novels I used to read, to work my way through an entire box of tissues, soaking them with tears and snot.  But my mother, whose funeral I’m packing for, had no appreciation for spectacle, and has passed this trait on to me.  Perhaps it’s because she had four teenage daughters at one time, and intuitively knew, that if allowed, girl drama plus high levels of hormones could combine and possibly blow the roof right off of our house.  Our upset was never rewarded with her attention, and thus suppressed. And now, when I could really use a bout of hysteria, I can’t even cry. Instead, I run my tongue over the shredded skin on the inside of my mouth.  I carefully count out the appropriate pairs of underwear, roll and tuck them into the corners, filling the dead space, the way my mother taught me to pack.  The eulogy is placed in the carry-on.  Just in case.

There are shoe issues.  Emma, my oldest, has been charged with carrying her father’s dress shoes in her luggage.  He is working in Missouri and meeting us in Boston. She has plenty of room, but resents the idea of those big shoes in with her things.  Alice, my younger daughter, disapproves of my shoe choice.  She’s scandalized, actually, by my blue Louise et Cie closed-toe sling backs with the 2 and ¾ inch heel.  They match the design in my dress perfectly, and even though they’ve had two sleepovers at the shoe repair shop to  stretch the toe-box, I love them.

“You can’t wear those shoes to a funeral,” Alice says.

“Why not?”

“You just can’t,” she says, shaking her head.  I know she’s referring to the pointy toe, the ankle strap.  She thinks they are too sexy. She throws her hands up in a gesture that says, Mothers.  They never listen, and walks away. I turn the offending footwear so they are facing in, heel to toe, and place them in my luggage.

The next day, I wrestle the girls out of slumber and into the car for the long drive to the Ft. Lauderdale airport. Twenty minutes into the ride, Emma’s voice from the back seat, “Mom, I forgot my sandals.”  She means the ones she needs to go with her dress for the service. If we go back, we will miss our flight. I keep driving.  Inside my mouth, I taste the metallic tang of blood.

***

I am three days into my new routine of waking an hour before the sun rises to meditate, pray and write, when I call someone an asshole.   I am walking my dog Misty, and we have paused at the top of our street, under the shade of a Banyan tree to greet our neighbor-friends, Karen and McDuff.  I have been up for so long the day feels solid, as established as the blacktop under my sneakers, and it’s only eight am.   The orange grove across from us and the remnants of night-blooming jasmine carry an almost sickly sweet scent through the air, already thick with heat. Continue Reading…

courage, death, Fear, Guest Posts, healing, Inspiration, Vulnerability

#MyLifeMatters

November 10, 2015

By Klyn Elsbury

A few nights ago, I was wrapped in a blanket, lying on top of an RV off of a scenic overlook in Utah staring up at a sky full of endless, scintillating stars. The air was cool and crisp, delightfully tickling my lungs as they adjusted to the altitude. A handsome man with a beautiful soul was holding my hand and pointing out Venus to the south. Together, we were dreaming about the future. Something that until Orkambi came, I had all but given up on.

I dropped out of college because I started getting hospitalized several times a year, and I believed I would never live long enough to pay off my student loan debt.

I moved to California from Florida for a career in biotech/pharmaceutical recruiting so I could be closer to the companies that were developing the very drugs that would keep me alive. That would give me hope. When I started getting hospitalized every 4 months, I made the choice to leave my corporate career and preserve my lung function via exercise, diet, and adherence to prescriptions that managed the symptoms. I tried to get in on every clinical trial for Orkambi, before it was even called Orkambi, but time and time again I was denied because my lung function was too unstable.

He squeezed my hand excitedly, “did you see that?” referring to a shooting star that emblazoned an almost pitch black night. My heart skipped a beat. I shut my eyes and made a wish that one day, someday soon, I would be on this drug. I opened my eyes to see him smiling back at me.

For the first time in a long time, I believed I would have a future again. I was the first person in clinic the day after Orkambi was approved. However, they couldn’t write a prescription because I needed to go on IV antibiotics first. My lung function was around 50%. It was my 3rd round of IVs this year alone.

Meanwhile, one of my girlfriends locally who got approved for the drug, posted on Facebook that for the first time in years, she woke up without coughing. I can’t imagine a morning where an alarm clock wakes me up instead of a violent core-shaking, gut busting cough.

“Wow!” We both said in unison at yet, another shooting star. Who is lucky enough to see two of them in one night sky? Just moments apart? Surely this means there are good things to come. Waking up without a cough became my second wish. Continue Reading…

death, Family, Forgiveness, Grief, Guest Posts, healing, Regret

And I’m Sorry

November 5, 2015

By Stacy Jo Poffenbarger

Six years. Six long years. I waited and hoped and prayed and managed the instability while you looked for a way to find yourself. To forgive yourself. To reconcile your own past and face your own demons.

Everytime the phone rang or the text message sound went off. Every month that went by without a word.

Every time you said it was over, you were done. You loved me but not enough. You needed to be free.

And yet, I waited. Six long years. I looked after your mom while you were away. Behind your back. Taking her grocery shopping on Sundays and out to dinner on Wednesday’s, just so she wasn’t so lonely. I don’t even think she liked me very much, but she missed you and there was our common ground.

When she died, you called for me, and I was there to help pick up your pieces, drunk and broken.

I never dated anyone else. Never once strayed. I waited patiently, through the lies, the promises and the times you found comfort in someone else’s bed.

Some said I was a fool. Or a girl in love.

***

Then one day you came around. You were done running. You loved me enough and proved it with a ring. We started to build a life. Together. The three of us. You took my son with you to teach him to build a house. To learn to work with his hands. And then to the bar to bond like a man. I was so mad. You told me you and he were friends, buddies, pals. And he told me he thought you were funny and smart and cool. He was happy we were together. That I finally had the love I waited for. He told me he was relieved because he didn’t want me to end up all alone. And I was happy. Finally truly happy. Continue Reading…