The Tribe of Us

corner market at pikes cropped (1)

The Tribe of Us

by Gay Degani

I’ve just spent the last five days in the beautiful city of Seattle experiencing what community really is. I’m not talking about Pike’s Market, though charming with its wealth of tulips in buckets, its yellow-clad fish mongers, and yummy fish tacos nor am I talking about the city’s juxtaposition of old and new, the brick and arches of the Corner Market flanked by sleek Washington scrapers as seen from the Ferris wheel.

No, I’m talking people, those writers who come from all over the world like Christopher Allen from Munich and May-Lan Tan from London as well as from every part of the U.S. including San Diego’s Bonnie ZoBell or Staunton Virginia’s Clifford Garstang. There are so many more I could name who’ve helped create a virtual community out of the ether and know what the word “kinship” means.

What brought us together this week—in real life—was the Association of Writers and Writing Programs. AWP hosts a conference in a different U.S. city every year, and I’ve been lucky enough to travel to two of them, Boston in 2013 and Seattle this year. There were over a rumored 12,000 writers who braved snow-bound airports to come to this Pacific Northwest city and the lime green ribbons worn by each reminded me that we are a tribe of artists and teachers and students who love the written form. For me, it’s been an opportunity to meet writers I know from the various online communities such as Zoetrope, Fictionaut, and Facebook.

Why is this important? If you write, you know. Slumping over a laptop until the sun yawns over the horizon can be a lonely business and often loved ones can’t figure out why a warm quilt and a soft bed aren’t as important as pounding out words until your fingers ache. But 12,000 writers en masse understand. And those who take the time to tap out encouragement to you on Facebook or offer you thoughtful critiques of your work at Zoe, they are your compadres, your soul mates, your honest evaluators, who keep you focused on your intention: to put out the best work you can.

The planners and executors who work behind the scenes of conferences like AWP’s deserve applause for bringing in people like Annie Proulx and Ursula Le Guin so we can learn from masters and for coordinating the panels that increase our skills and artistry. I appreciate all of you, and thank you for your efforts. Even more, for me, and I suspect for most, the precious jewel in this is just being with and surrounded by the word people—publishers, editors, and writers, new, emerging, established and those exploding wide open.

http://wordsinplace.blogspot.com/
http://smokelong.com/

gay 2 Gay Degani has published fiction on-line and in print including her short collection, Pomegranate Stories. She is founder of EDF’s Flash Fiction Chronicles, a staff editor at Smokelong Quarterly, and blogs at Words in Place. She’s had three stories nominated for Pushcart consideration and won the 11th Annual Glass Woman Prize. Her novel, What Came Before, is currently being serialized at Every Day Novels and will soon be out in print and downloadable in ebook format.

The Way Things Used To Be.

Trees trees

So many things have changed since July 27, 2013.

I worry more about my mother.

My mother worries more about me, with a tremble in her voice.

I have more nightmares. Horrible, vivid nightmares.

I dream about my remaining siblings dying. About my mother dying. My children. My dogs.

My husband.

Their deaths are gruesome.

I dream about my close friends disappearing without a trace.

About adopting a new dog; bringing it home, naming it, loving it. And then it dies.

When my alarm buzzes in the morning, my blankets are on the floor and the cases have been ripped from my pillows.

I have come to dread the night.

And my child dreams. She wakes up crying, unable to catch her breath and unsure if the reason is asthma or anxiety. She runs to the living room and checks the dogs, feeling all over their tiny bodies for any hint of a cancerous lump.

My other daughter is just angry. All the time. Every day.

Every night.

When my husband or children are more than five minutes late coming home, I immediately imagine they’ve been in a terrible accident, and then stand in my living room arguing with myself over the stupidity of my worry.

Even as I peer through the window and down the road for any sign of our vehicle.

This winter has been riddled with colds, and anytime I sneeze or cough, my mom shows up with money to shove in my hand and pleas to take myself to the doctor.

“Catch it early!” she says, followed by a hard swallow. “Catch it early and you’ll be okay!”

Because my sister did not catch it early, and my sister was not okay.

And I see the difference in our family doctor, and I remember how she wept when my sister died. If my children or I go in for an asthma flare or a sinus infection, her face pinches up as she examines, quickly firing off questions like Do you have worsening pain anywhere? Night sweats? Random fevers? Have you felt any lumps? Have you checked for lumps? Let me check.

It’s different now.

Because we are now A Family Touched By Cancer.

And that makes everything change.

I notice the difference when I know a friend from long ago — when we were melodramatic teens giggling over boys and clothes and dances — is now battling her second round of cancer. I want to reach out, I want to connect and do something to help, to make it easier.

But I sit paralyzed.

Because I don’t want to see cancer anymore.

I close my eyes against tear-jerker commercials begging for money for bald children, fighting for their lives and losing their childhood innocence and can’t I give just a little of my paycheck for them?

I grab the remote and change the channel.

I can’t. I can’t bear to see it. Or touch it. Or hear it.

I am selfish.

I notice the difference when I stand weeping in a Wal-Mart with a skein of yarn in my hands, wondering at the tears slipping down my face; the burning, choking sensation in my throat.

I think and think and count the days and finally it strikes me. It’s the twenty-seventh of the month, the anniversary that somehow my tears remembered but I tried to forget.

My tears never forget.

I see a tall, thin women in a store; long blond and brown and meticulously straightened hair hanging down her back. I see a brightly colored, peace sign bag swinging from her shoulder and my heart catches and stops for a second and I think Oh! Charlotte is here!

And I take two or maybe three steps and then I remember.

I used to visit my father’s grave. I would cry and leave a poem I had written and I’d notice the cherry cough drops or a crushed Bud Light can left by one of my nephews and I would smile a little bit.

I haven’t gone since we buried my sister next to him.

I cannot bear to see her name on a headstone.

It was too soon.

And I wasn’t ready.

Everything has changed. Every bit, every piece of life has changed.

And sometimes I just really miss the way things used to be.

Light a Candle in the Darkness

Light a candle in the darkness

Yesterday, through a Facebook post of a dear friend of mine, I learned that March 1st is “Disability Day of Mourning”.

It’s a day set aside to mourn those lost to mothers who have suffocated them, fathers who have shot them, sisters who have stabbed them.

And we hear this in the media, these horrific stories, about the mother who simply could not take it anymore, or the father who only had his child’s best interests in mind.

The media says this is acceptable, because the murdered child had a disability.

Because it’s a justifiable homicide if a person is “hard to handle”.

Because it’s a justifiable homicide if the parent or caregiver is “fatigued.”

Because it’s a justifiable homicide if the parent or caregiver “doesn’t know what else to do.”

Justify it all you want, it’s still a parent or caregiver murdering a child or adult who trusts them.

Imagine this:
A child is sleeping, trusting that even though a day has been rough, he is in a safe place with a parent he loves and who he expects loves him. Precious little head on a red pillow, with a Spiderman blanket tucked perfectly around his tiny form. Startled, he begins to drift awake and hears a shuffling sound in the room – steps: one, two, three, four….it’s here! Next to his bed! Frantically, he scrunches his eyes shut, pulls the blanket tighter around his body. He knows it must be a monster; he hears heavy breathing; he feels the monster hovering above his bed. Finally, he can take it no longer and opens his eyes.

And the last thing he sees is his beloved mother, pillow in hand and bearing down on his precious little face.

He fights. Tries to scream. His hands flap wildly around the bed.

But the pillow is big, and his mother is stronger than he could ever hope to be.

Firmly, she holds the pillow over him until his breaths become ragged and his heartbeat slows.

She waits. Waits for her little boy to stop thrashing. For silence. For peace.

She thinks back several years, to when she was pregnant and this same little boy lived in her belly. She remembers choosing colors for his nursery, reading stacks of books about pregnancy and breastfeeding and child-rearing. She recalls the doctor handing her perfect little boy over to her; there had been screams and sweat and blood and the pain had been unbearable, but now it was worth it, because he was finally here, and she was his mother and would do anything in the world to protect him.

But this wasn’t what she wanted.

And she pushes the pillow down harder.

Silence. Peace.

Now, I’m a pretty laid-back person, easygoing and tolerant. I can generally see another person’s point of view and respect it, even if we disagree. I realize every person on the planet has had unique experiences that have brought them to the place they are currently in, and if nothing else, I can empathize with them and their choices.

I may not understand, but I sympathize and feel compassion for their situation, and will try to help them and show support.

But this? THIS?

No. This, I cannot understand. I cannot sympathize. I cannot feel compassion.

Not for these people.

I sympathize and feel great compassion for their victims, but not for the monsters who would murder a child or adult who depends on them. Trusts them. LOVES THEM.

But the supporters and sympathizers cry, “Parenting a special needs child is HARD. You don’t understand.”

Oh buddy. I understand. I know.

Because I’ve lived it.

Three of my children live with a chronic and life-threatening medical condition. Toss a few behavior issues into the mix, and you’ve got a recipe for disaster.

Right?

Wrong. I’ve got a recipe for beauty. Art. Creativity. Compassion. Love. Trust. Laughter. Life.

I understand it can be exhausting.

There have been times I have wept from the exhaustion of it.

I understand it can be hard.

There have been days when I have slammed my fists against a brick wall in frustration and anger.

I understand it may, occasionally, feel hopeless.

And years ago, in our very darkest times, I have thought If I could kill myself to make them well, I wouldn’t hesitate, wouldn’t stop to think, I would do it in an instant.

I haven’t thought like that in a long while but I can guarantee you, if a physician came to me today and told me this was true, that the only way to help my children live long and pain free lives was to kill myself, I’d stick my head in the oven in less than a second. No second thoughts. No hesitation.

Know why?

For the same reason I would never leave a burning building without getting my kids out first.

Because I love my children more than my own life.

I always have, since the moment I learned of each pregnancy; I’ve loved them more than myself.

Every second.

Even when it’s hard.

Even when it’s beyond painful.

Even when I’ve been hit in the face by a solid object thrown at me during a child’s meltdown.

Even when they say they hate me.

Even when I nearly lost my youngest child after a major surgery.

My first thought is never about me, or how I am affected.

My first thought has ALWAYS been for my child.

So I cannot understand how so many people can make the choice to assassinate their own offspring.

Their children.

Their children.

Further, I cannot for the life of me understand those who SUPPORT the ones who do so.

There should be outrage.

There should be media coverage that does NOT blame the innocent victim.

There should not be love and acceptance for the murderer.

March 1st is “Disability Day of Mourning”. Below is a list of just SOME of the people murdered by their family or caregivers – the very people who should have been their advocates and protectors. I never knew her, but Shylea Myza Thomas was a 9-year-old little girl who lived the town over from me. I remember back in 2009 when her story broke, and I cried in my living room as the coverage spilled from ABC 12 news, showing pictures of a beautiful little girl who had been murdered by her aunt and stuffed into a storage unit – like a bag of old trash — so her aunt could continue to recieve her disability checks.

•Tracy Latimer, 12 years old, gassed by her father in 1993

•Charles-Antoine Blais, 6 years old, drowned by his mother in November 1996

•Casey Albury, 17 years old, strangled by her mother in 1997

•Pierre Pasquiou, 10 years old, pushed into the sea by his mother in 1998

•Jim Helm, 27 years old, killed by his mother in a murder-suicide in November 1998

•Daniel Leubner, 13 years old, burned alive by his mother in September 1999

•James Joseph Cummings Jr, 46 years old, stabbed to death by his father in the institution where he lived in November 1999

•Justin Malphus, 5 years old, beaten and drowned by his mother in April 2000

•Gabriel Britt, 6 years old, suffocated by his father in March 2001

•Johnny Churchi, 13 years old, strangled by his mother in 2001

•Mark Owen Young, 11 years old, poisoned and then pushed off a bridge by his mother in a murder-suicide, September 2001

•Brahim Dukes, 18 years old, starved by his stepmother in December 2001

•Lilian Leilani Gill, 4 years old, strangled by her adoptive mother in March 2002

• Mitchell Dickson, 10 years old, slashed to death by his mother in June 2002

•Dale Bartolome, 27 years old, killed by his father in a murder-suicide in July 2002

•Jason Dawes, 10 years old, suffocated by his mother in August 2003

•Maggie Caraballo, 38 years old, beaten to death by her sister in August 2003

•Angelica Auriemma, 20 years old, drowned by her mother who first tried to electrocute her to death in 2003

•Scott Olsen, 29 years old, starved to death by his sister in December 2003

•Eric Bland, 38 years old, starved to death by his sister in March 2004

•Scarlett Chen, 4 years old, drowned by her mother in July 2004

•Patrick Markcrow, 36 years old, drugged and suffocated by his mother in March 2005

•Tiffany Pinckney, 23 years old, locked in a basement and starved to death by her sister and brother-in-law in April 2005

•Sarah Naylor, 27 years old, shot by her mother in a murder-suicide in September 2005

•Ryan Davies, 12 years old, drowned after his mother caused him to fall off of a bridge in a murder-suicide

•Christopher DeGroot, 19 years old, died of severe burns after he was locked in his parents’ apartment alone during a fire in May 2006

•Katie McCarron, 3 years old, suffocated by her mother in May 2006

•William Lash III, 12 years old, shot by his father in a murder-suicide in July 2006

•Lakesha Victor, 10 years old, starved by her mother in August 2006

•Marcus Fiesel, 4 years old, wrapped in heavy blankets by his foster parents and left in a closet to suffocate while they went out of town in August 2006

•Ulysses Stable, 12 years old, throat slit by his father in November 2006

•Brandon Williams, 5 years old, poisoned and beaten to death by his mother in March 2007

•Criste Reimer, 47 years old, thrown from a balcony by her husband in 2007

•Jared Greenwood, 26 years old, died of infected bed sores after being left in place and neglected by his mother in 2007

•Francecca Hardwick, 18 years old, locked in a burning car with her mother in a murder-suicide in October 2007

•Naomi Hill, 4 years old, drowned by her mother in November 2007

•Shellay Ward, 7 years old, starved and neglected by her parents in November 2007

•Maxwell Eyer, 2 years old, beaten to death by his father in December 2007

•Xiao Fei, 20 years old, poisoned and suffocated by her mother in 2008

•Calista Springer, 16 years old, chained to a bed and abandoned in a fire by her entire family in 2008

•Courtney Wise, 17 years old, starved to death by her mother in February 2008

•Ethan Scott Kirby, 3 years old, beaten to death by his mother’s boyfriend in August 2008

•Jacob Grabe, 13 years old, shot by his father in 2008

•Tom Inglis, 22 years old, died after his mother administered an overdose of heroin to him in November 2008

•Christian Clay Jenkins, 14 years old, given an overdose of oxycodone by his father in 2008

•Kyle Dutter, 12 years old, shot by his father in a murder-suicide in 2008

•Lexie Agyepong-Glover, 13 years old, left in a frigid creek by her mother and died of drowning and exposure in 2009

•Terrell Stepney, 19 years old, poisoned by his grandmother in a murder-suicide in 2009

•Jeremy Fraser, 9 years old, died of recurrent leukemia after his mother withheld the medication that would have saved his life in March 2009

•Shylea Myza Thomas, 9 years old, starved to death by her aunt, who then hid her body in order to continue to collect money she received for Shylea’s care in April 2009

•Pamela Camille Hall, 59 years old, stabbed by her son-in-law in April 2009

•Lloyd Yarbrough, 62 years old, fed an overdose of prescription medication through his feeding tube by his wife in May 2009

•Jeremy Bostick, 11 years old, gassed by his father in 2009

•Peter Eitzen, 16, stabbed by his mother in July 2009

•Tony Khor, 15 years old, strangled by his mother in October 2009

•Betty Anne Gagnon, 48 years old, tortured to death by her sister and brother-in-law in November 2009

•Walter Knox Hildebrand Jr, 20 years old, died of a seizure induced by his brother’s physical abuse in November 2009

•Laura Cummings, 23 years old, raped and tortured to death by her mother and brother in January 2010

•Jude Mirra, 8 years old, forced by his mother to overdose on prescription medications in February 2010

•Ajit Singh, 12 years old, forced by his mother to drink bleach in February 2010

•Gerren Isgrigg, 6 years old, died of exposure after his grandmother abandoned him in a remote area in April 2010

•Leosha Barnett, 17 years old, starved to death by her mother and sister in May 2010

•Glen Freaney, 11 years old, strangled by his mother in May 2010

•Payton Ettinger, 4 years old, starved by his mother in May 2010

•Christopher Melton, 18, gassed by his mother in a murder-suicide in June 2010

•Rylan Rochester, 6 months old, suffocated by his mother in June 2010 because she believed him to be autistic

•Kenneth Holmes, 12 years old, shot by his mother in a murder-suicide in July 2010

•Zain Akhter, 5 years old, and Faryaal Akhter, 2 years old, strangled by their mother after she first tried to get them to drink bathroom cleaner in July 2010

•Emily Belle Molin, 85 years old, hit and run over with a car by her son in August 2010

•Rohit Singh, 7 years old, beaten to death by his father in September 2010

•Zahra Baker, 10 years old, murdered and dismembered by her stepmother and perhaps her father in October 2010

•Chase Ogden, 13 years old, shot by his mother in a murder-suicide in October 2010

•Karandeep Arora, 18 years old, suffocated by his parents in October 2010

•Donald Parojinog, 83 years old, starved by his daughter in January 2011

•Chad Jackson, 25 years old, starved and neglected by his mother in July 2011

•Julie Cirella, 8 years old, poisoned by her mother in July 2011

•Joseph Conant, 11 years old, and Nacuma Conant, 33 years old, shot by their father/brother in July 2011

•Noe Medina Jr, 7 months old, thrown 4 stories by his mother in August 2011

•Benjamin Barnhard, 13 year old, shot by his mother in a murder-suicide in August 2011

•Jori Lirette, 7 years old, decapitated by his father in August 2011

•George Hodgins, 22 years old, shot by his mother in a murder-suicide in March 2012

•Daniel Corby, 4 years old, drowned by his mother in March 2012

•Malea Blakely-Berry, 16 years old, starved by her mother in June 2012

•Matthew Graville, 27 years old, tortured and beaten to death by his half-brother in July 2012

•Melissa Stoddard, 11 years old, suffocated in restraints that her father and step-mother routinely used in December 2012

•Robert Gensiak, 32 years old, starved by his mother and sisters in March 2013

•Alex Spourdalakis, 14 years old, poisoned and stabbed by his mother and godmother in June 2013

•Matthew Hafer, 28 years old, poisoned by his mother in July 2013

•Marian Roberts, 57 years old, shot by her father in a murder-suicide in August 2013

•Jaelen Edge, 13 years old, poisoned by his mother along with his sister Faith in September 2013

•Tamiyah Audain, 12 years old, starved, abused and neglected by her cousin in September 2013

•Dameian “Luke” Gulley, 14 years old, strangled by his stepfather in November 2013

•Randle Barrow, 8 years old, drowned by his mother in a murder-suicide in December 2013

•Mickey Liposchok, 52 years old, shot by his father in a murder-suicide in December 2013

•Damien Veraghen, 9 years old, poisoned and suffocated by his mother in a murder-suicide in January 2014

•Vincent Phan, 24 years old, shot by his mother in a murder-suicide in January 2014

Did you read them? Every name of each person on this list who was murdered?

Are you outraged?

Do you know why society finds it acceptable for family members to murder their relatives with special needs?

Because we are living in a culture that deems special needs people an entirely different species.

But they aren’t! These people are exactly the same as you and I. They deserve respect. They deserve love and compassion. They deserve to be treated with the same dignity afforded to anyone else.

They feel pain.

They love. They laugh. They trust.

And they deserve a voice.

They deserve to be remembered.

They deserve somebody willing to stand up for them.

Will you give them a voice?

Will you stand up for the innocents?

Will you light a candle in the darkness?

Better yet, BE the candle in the darkness.

Be the candle.

Stand with me.