Posted in Disability, disability/illness

They called it a Punishment for the Unknown Sins, Some called it ‘Madness’. Today it is called ‘Developmental Disability’ and my life was destined to be a part of it’…

Courtesy of Sandy Millar, Unsplash

He came into this world with an innocent spirit  but with a physical condition, recognized as ‘Development Disability’. At that time  it was commonly called ‘Mental Retardation’, which meant anyone suffering from it  would be having difficulties in certain areas of life, especially in “language, mobility, learning, self-help, and independent living”.

A helpless human being born in this world with an innocent soul, oblivious to life’s reality, unaware of its purpose, totally unconscious of self but for the fulfillment of the  basic need for food and strangely, of extreme sensitivity to music. The tunes that caught his fancy would excite him to the point of screaming that gradually melted into crying and, after long hours, would end by fatigue and sleep.

Everyone at home loved music. Father had quite a collection of 75 rpm records and a stylish Grundig record player which would be attached to the radio. Almost every evening there would be a half-hour music session before dinner was served.

My earliest memories are of joyful moments when he was born. Good looking, with dark eyes, long eyelashes, adorable face specially when it broke into a smile, but something was very odd about him. I could not understand just what at that time. Two years old but hardly able to sit: “when will he play with us? Why doesn’t he speak ?” The only answers were “with time dear” and “in due time, he will.”  We would run off and get busy with our own games and books, accepting the quietly given explanation.

When he was five, he began to sit, but still no speech, nor play, nor self awareness. He would sit on the tricycle but could not pedal or ride. With time he learned to stand and one day took a few steps. Soon with the support of the wall he began to walk. Still no speech. Fits of laughter began to occur and would end up in screams. Lying on the floor nothing would stop the screaming untill time brought an end to them.

He never knew he had a name. He was not conscious of t parents, siblings, or anyone else. He had no idea of day or night. When he started walking he was not aware of the way to go. Once unnoticed he walked out of the gate and onto the road, he was almost run over by a passing vehicle. He was hit and the fall broke two of his ribs. It was a painful time for him. From then on he had to be strictly monitored and often in a bolted room.

With passing years the truth of his never getting well and normal was accepted. He would never be able to converse or take care of himself. He needed constant vigilant care for falls or injuries, for safety against electric wires and shocks, for all sorts of dangers. There was no end to care as he was alive in a world of his own. Parents did all they could. No medicine would work.

Hunger is a strong instinct. He would reach out and hold the arm tightly of anyone close to him at that moment and would push that person towards the door of the room.I t was a clear indication that he was asking for food, but he had to be fed. He could not hold a spoon or a cup, nor a biscuit nor a piece of bread. Sometimes the morsel would get stuck in the throat because it was not properly chewed. Panic would result. Fortunately the first aid of patting on the back would work.

He was not aware of the dangers of injury. Once, in a fit of laughter he clutched the electric extension wire on the floor and let out a loud scream, by the time the connection was cut his hand was burned, the flesh cut and bleeding. The wound healed but the hand could not be normal again. The need for constant vigilance kept the whole family alert. The risk of leaving him alone even for a few seconds was profound and life threatening. One aspect in his personality was that he was a docile human being. Nonviolent.

A newly established state had very little  health care or disability support centers for special-needs children or adults. Tariq ,as he was named would live in his own home, which for the family became a guarded place. Fear concern and worry prevailed, only prayer would bring some solace and strength to the heart. One can never fully understand nor find any answers. The truth is with the One Power Almighty.

Disability of all sorts needs constant care comfort patience respect and love. May Allah the Most Gracious and Most Merciful save and protect his people on this beautiful Earth and May all be blessed with the best of health and happiness.

© 2020, Anjum Wasim Dar

Posted in Charles W Martin, Photography/Photographer, poem, Poems/Poetry

my mother’s love…

copyright cwmartin 2012

sometimes
when a fever
runs high
and
i
am alone
in my bed
all my fears
swirling in my head
creating such
dread
i
would swear
i feel your gentle hands
wiping my brow
and
speaking softly
that all
will be well
and
that i
am
not
alone

Poem inspired by Soul Dipper (http://souldipper.wordpress.com/2012/01/31/love-embedded-a-mothers/)

678ad505453d5a3ff2fcb744f13dedc7-1product_thumbnail.php41V9d9sj5nL._SY344_PJlook-inside-v2,TopRight,1,0_SH20_BO1,204,203,200_CHARLES W. MARTIN (Reading Between the Minds) — earned his Ph.D. in Speech and Language Pathology with an emphasis in statistics. Throughout Charlie’s career, he maintained a devotion to the arts (literature/poetry, the theater, music and photography). Since his retirement in 2010, he has turned his full attention to poetry and photography. He publishes a poem and a photographic art piece each day at Read Between the Minds, Poetry, Photograph and Random Thoughts of Life. He is noted as a poet of social conscience. Charlie has been blogging since January 31, 2010. He has self-published a book of poetry entitled The Hawk Chronicles and will soon publish another book called A Bea in Your Bonnet: First Sting, featuring the renown Aunt Bea. In The Hawk Chronicles, Charlie provides a personification of his resident hawk with poems and photos taken over a two-year period. Charlie’s lastest book, When Spirits Touch, Dual Poetry, a collaboration with River Urke, is available through Amazon now.

Posted in poem, Poems/Poetry, poetry

New Mother, Turning to the Kora

20140104-184807When you still fit
my arms
like an instrument
beating rhythms
at my heart, you would, at times,
cry without cease,
without reason–without reason that I
could reason out–and I, almost without
reason myself, would play a music
of Kora and guitar
in which the strings,
sounding of bells,
plucked us from the closed-in walls
and wails,
lifted us
from the hard wood floor we walked, transported us
to some bigger brighter world where sun streamed
vibrationally, where leaves echoed, where
life strolled, where tears caught in scrunched cheeks seemed almost
ripples re-centering a well
on a day when one
craved water, a natural wrinkle
of wells and water.

Whirled shine glinted
upon our faces whether we looked
up or down, and even though, in that apartment,
metal gates shadowed the nearest windows;
we knew–even as an infant you could hear–
that the music held want as well
as tinkle, that knells mourn even as
they proclaim, that the lone also
harmonizes,
still you at last would smile, me
too, as if both of us were tuned
by those stringed scales,
so gratefully tethered.

– Karin Gustafson

© 2014, original artwork, poem and portrait (below), Karin Gustafson, All rights reserved

Kora ~ a twenty-one string bridge-harp used extensively in West Africa

photo-46KARIN GUSTAFSON (Manicddaily) ~ a guest contributor to Bardo focuses (sometimes) on the interface between creativity and stress, with a side of little elephant drawings. She is a writer and illustrator, having published a collection of poetry, Going on Somewherea children’s counting book, 1 Mississippi ( for lovers of light, water. and pachyderms) and, most recently,Nose Divea light-hearted mystery novel about teenagers, Broadway musicals, love, noses, New York City.  (More information about the books may be found at www.BackStrokeBooks.com and at Amazon.)  Since July 2009, Karin has been engaging visitors to her blog with her observations, poetry and artwork, especially her elephant sketches and cartoons. She is an active participant in d’Verse Poets Pub and a member of its d’Team.

Posted in Charles W Martin, Photography/Photographer, Poems/Poetry

holographic images

holographic images

these children you see
homeless hungry and alone
are to be ignored
their fate is not yours
nor that of your dear children
no need to look up
finish your coffee
catch the downtown train to work
you’ll feel better then
we have really tried
to make them invisible
but their holograms
for moral reasons
reappear from time to time
not to worry friend
winter vacation
is at hand so forget them
have another drink
give us a moment
to erase their visual file
from your memory
they’re a hologram
nothing more than an image
that somehow can bleed

.
678ad505453d5a3ff2fcb744f13dedc7-1product_thumbnail.php41V9d9sj5nL._SY344_PJlook-inside-v2,TopRight,1,0_SH20_BO1,204,203,200_CHARLES W. MARTIN (Reading Between the Minds) — earned his Ph.D. in Speech and Language Pathology with an emphasis in statistics.  Throughout Charlie’s career, he maintained a devotion to the arts (literature/poetry, the theater, music and photography).  Since his retirement in 2010, he has turned his full attention to poetry and photography. He publishes a poem and a photographic art piece each day at Read Between the Minds, Poetry, Photograph and Random Thoughts of Life. He is noted as a poet of social conscience. Charlie has been blogging since January 31, 2010. He has self-published a book of poetry entitled The Hawk Chronicles  and will soon publish another book called A Bea in Your Bonnet: First Sting, featuring the renown Aunt Bea. In The Hawk Chronicles, Charlie provides a personification of his resident hawk with poems and photos taken over a two-year period. Charlie’s lastest book, When Spirits Touch, Dual Poetry, a collaboration with River Urke, is available through Amazon now.

Posted in Charles W Martin, Peace & Justice, Poems/Poetry

an act of plagiarism…

an-act-of-plagiarism

the brown bag prophet
said
i submitted a script
for a new
television
reality show
called
the voiceless
where
a panel
of international judges
based upon
their own
personal gain
decide
on which acts
of genocide
and
human crisis
are
addressed
by
foreign intervention
saving
as
a collateral event
the lives
of innocent
women
and children
but
the studios said
that show
was
already airing
it’s called
the un

.
678ad505453d5a3ff2fcb744f13dedc7-1product_thumbnail.php41V9d9sj5nL._SY344_PJlook-inside-v2,TopRight,1,0_SH20_BO1,204,203,200_CHARLES W. MARTIN (Reading Between the Minds) — earned his Ph.D. in Speech and Language Pathology with an emphasis in statistics.  Throughout Charlie’s career, he maintained a devotion to the arts (literature/poetry, the theater, music and photography).  Since his retirement in 2010, he has turned his full attention to poetry and photography. He publishes a poem and a photographic art piece each day at Read Between the Minds, Poetry, Photograph and Random Thoughts of Life. He is noted as a poet of social conscience. Charlie has been blogging since January 31, 2010. He has self-published a book of poetry entitled The Hawk Chronicles  and will soon publish another book called A Bea in Your Bonnet: First Sting, featuring the renown Aunt Bea. In The Hawk Chronicles, Charlie provides a personification of his resident hawk with poems and photos taken over a two-year period. Charlie’s lastest book, When Spirits Touch, Dual Poetry, a collaboration with River Urke, is available through Amazon now.

Posted in Charles W Martin, Peace & Justice, Poems/Poetry

press conference

press conference

come
let us
dig up
the bones
of children
and
carve them
into spears
so that
their parents’
deaths
might seem
less
painful
when brought about
by
some part
of their own
join
with us
in prayer
to a god
of our own image
cloaked
in a bloody shroud
of justified war
glorifying
our
humanity
as we
steal
the last breath
of hope
from
the corpse
of
peace

– Charles W. Martin

© 2013, poem, illustrations, portrait and book cover art (they’re below), Charles W. Martin, All rights reserved

.
678ad505453d5a3ff2fcb744f13dedc7-1product_thumbnail.php41V9d9sj5nL._SY344_PJlook-inside-v2,TopRight,1,0_SH20_BO1,204,203,200_CHARLES W. MARTIN (Reading Between the Minds) — earned his Ph.D. in Speech and Language Pathology with an emphasis in statistics.  Throughout Charlie’s career, he maintained a devotion to the arts (literature/poetry, the theater, music and photography).  Since his retirement in 2010, he has turned his full attention to poetry and photography. He publishes a poem and a photographic art piece each day at Read Between the Minds, Poetry, Photograph and Random Thoughts of Life. He is noted as a poet of social conscience. Charlie has been blogging since January 31, 2010. He has self-published a book of poetry entitled The Hawk Chronicles  and will soon publish another book called A Bea in Your Bonnet: First Sting, featuring the renown Aunt Bea. In The Hawk Chronicles, Charlie provides a personification of his resident hawk with poems and photos taken over a two-year period. Charlie’s lastest book, When Spirits Touch, Dual Poetry, a collaboration with River Urke, is available through Amazon now.

Posted in Guest Writer, Poems/Poetry

Children’s Hospital, a poem

CHILREN’S HOSPITAL, WAITING ROOM

by

Rev. Bill Cook Poetry Matters

From this side of this window-
through this glass looking
down seventeen stories –
the world is a odd place.
.
The smell of rain
has become a distant memory.
Taxi cabs – thick bugs.
People- so much seed
scattered on a hard path.
.
Who would have thought
a tiny swish rising
through a stethoscope
could so change everything.
.
Here we are a congregation
Of the suspended –
Inhabitants of a sanitized purgatory –
A communion of those who wait.
.
Here the priests and prophets
wear blue scrubs
and white paper masks.
.
Why, I ask, is it that your tiny heart,
no larger than your tiny hand,
should refuse to grow?
What providence has brought us here?
What karma? There is no answer
.
so we wait.
We wait for our names to be called.
We wait.

– Bill Cook, Poetry Matters

Re-blogged with the permission of Bill Cook, Poetry Matters. Bill is an Ordained Elder in the United Methodist Church, serving a wonderfully diverse congregation.

  • His church: St. Paul UMC, Willingboro NJ.
  • BA. English Lit., Rutger’s, the State University, New Brunswick NJ.
  • M Div. New Brunswick Theological Seminary New Brunswick NJ.
  • D Min. Wesley Theological Seminary, Washington DC.

Although Bill’s had a life long love of reading poetry, he’s relatively new to writing and publishing it. In addition to his poetry blog, Poetry Matters, he has three other blogs that address spiritual matters. Most recently his poem Lost was picked up for publication by a regional poetry magazine.

Posted in Jamie Dedes, Poems/Poetry

HEARTS UNDER LOCK AND KEY

I wait until I hear a gate latch lift
the turn of key in lock.
I sit amongst toys and unwashed clothes,
I sit and she fingers the beads until you speak
in a voice that no longer seems familiar, only strange.
I turn as our child tugs at the string.
I hear a snap and a sound like falling rain.
The Albatross, Kate BassThe Pasta Maker
·
HEARTS UNDER LOCK AND KEY
·
by
·
Jamie Dedes
·
I really wanted
to speak to you of this:
the love I had wild
and so long ago
that now it’s dry
parched like a river
·
Once it was a love moist
as a green spring rain
delicate as snow
prolific as a poet
I gave you my love
a sweetly tender thing
·
a well-written poem
on twenty-pound linen
You handed love back
wrinkled and torn
and nicotine stained
smelling of whiskey
·
I handed you love
on our white wedding day
when you kept your heart
under lock and key
and your eyes wouldn’t
seek mine at the rail
·
I gave love to you
in the palms of our child
you brushed his sweet face
and flew away to
lose yourself in a
gold land with gold girls
·
Now I too keep my heart
safe under lock and key
and heavy the lock is
closed so tight with rust
and no hope in sight
no hope wanted
·
© 2010, 2011, Jamie Dedes, All rights reserved

Photo credit ~ © 2010, 2011, All rights reserved, Barb Stone, The List of Buddha Lists


Posted in Guest Writer, Perspectives on Cancer

PERSPECTIVES ON CANCER #27: Cookies for Kids Cancer, Do Whatever It Takes

[In the United States alone in 2007], approximately 10,400 children under age 15 were diagnosed with cancer and about 1,545 children will die from the disease.  MORE Childhood Cancers Fact Sheet, Cancer Topics, Cancer.gov

COOKIES FOR KIDS CANCER

by

© Cookiesforkidscancer.org

Beginnings

Cookies for Kids’ Cancer, a 501(c)3 non profit, was founded by parents inspired by their son Liam’s battle with cancer. They were shocked to learn that the main reason over 25% of kids diagnosed with cancer do not survive is because of a lack of effective therapies. And the reason for the lack of therapies was very simple: lack of funding. They pledged to support the development of new and better treatments by giving people a simple way to get involved.

It all started with 96,000 cookies…

Gretchen had a crazy idea for a larger-than-life bake sale with the goal of baking 96,000 cookies with friends and volunteers. Dozens of other families whose children were also battling Neuroblastoma got involved and began to take orders for cookies from friends, co-workers, and neighbors. All 96,000 cookies were sold in three weeks, thanks to the work of over 250 volunteers. The event raised over $400,000 for pediatric cancer research, but it was soon clear that something bigger than a bake sale had begun. Even weeks after the event was over, requests for cookies kept coming in. What started as a desperate act to raise money and awareness for her child’s own cancer blossomed into something much bigger than any had planned. The event caught the eye and the hearts of the media and people all over the country. Emails from across the United States started flooding in asking the same simple question “what can we do to help?”

Be a Good Cookie

Make a difference by joining the mission to find a cure for pediatric cancer. There are many ways to support Cookies for Kids’ Cancer. Hosting a bake sale is a sweet and simple way for people everywhere to get involved in the fight against pediatric cancer. Send our cookies for birthdays, anniversaries, or just because. Our cookies taste as good to eat as they feel to give.

And you don’t have to eat or bake cookies to be a Good Cookie. Other supporters have run marathons, held tag sales, organized golf tournaments, collected spare change, and hosted car washes to support Cookies for Kids’ Cancer. We’ve even made it simple to donate online once or once a month with online giving. The ideas are only limited by your imagination. No effort is too small and every penny counts.

Our mission:

Cookies for Kids’ Cancer is committed to raising funds to support research for new and improved therapies for pediatric cancer, the leading cause of death by disease for children under the age of 18. Through the concept of local bake sales, Cookies for Kids’ Cancer provides the inspiration and support for individuals, communities, and businesses to help fight pediatric cancer. 

Facts about Kids’ Cancers

Cookies for Kids’ Cancer is not about one child or one type of pediatric cancer. It is about changing the facts of pediatric cancer for the better, forever. Important statistics to know:

  • Cancer claims the lives of more children annually than any other disease ” more than asthma, muscular dystrophy, multiple sclerosis & AIDS combined.
  • 46 children per day are diagnosed with cancer totaling nearly 13,000 new cases per year.
  • Cure rates have improved dramatically and advances in childhood cancer research has provided seminal insights into the cancer problem in general. Today, 4 out 5 children diagnosed with cancer can be cured.
  • While long-term goals for the pediatric cancer community will focus on securing more federal funding for childhood cancer research (more than the 1-2% of the National Cancer Institute budget that is current expended), philanthropy plays a critical and essential role in the ongoing battle against childhood cancer.

About the Founders

Gretchen and Larry Witt founded Cookies for Kids’ Cancer in 2008, just a few short months after the success of their first cookie sale during the holidays 2007. Their efforts have always been inspired by their son Liam who was diagnosed with stage 4 cancer in 2007 at the age of 2. Tragically, Liam came to the end of his courageous 4-year fight with cancer on January 24, 2011 at the age of 6. Though devastated by his loss, the Witts remain more determined than ever to continue the fight against pediatric cancer.

Gretchen Witt has been recognized nationally for her leadership as a mom on a mission. In 2010, Witt was named one of Woman’s Day Magazine’s 50 Women Changing the World and Traditional Home Magazine’s Classic Woman of the Year. She was also featured in the December 2009 issue of O, the Oprah Magazine, for her work with Cookies for Kids’ Cancer. She accepts speaking engagements to tell the story of the beginnings of Cookies for Kids’ Cancer, the need for funding for pediatric cancer research, and to share her experiences as a mother fighting endlessly for her son and for all children. Her story resonates as one of determination and guts with a willingness to stop at nothing to do what’s right and what’s best for all kids fighting cancer. Audiences as varied as The Cornell Club NYC, Meredith College’s 2010 Commencement and the International Housewares Show in Chicago have all been inspired by her words and her passion.

Feature photograph and article courtesy of cookiesforkidscancer.org.

Video upload to YouTube by