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1.
support groups for Parents receiving
a fetal diagnosis
Families Forever (Australia)
A
support group for parents experiencing pregnancy, child loss and fetal
diagnosis offering email support, a parents’ group, chat room including
scheduled monthly chat, discussion forum, free web page for your special
child, coping tips, articles and resource list, Access to others' stories
and journals and a monthly newsletter as well as support meetings.
http://www.angelfire.com/poetry/talina
Antenatal Results Choices (UK)
ARC is a
national charity, which provides non-directive support and information to
parents throughout the antenatal testing process Their role is to help
parents arrive at the most appropriate decision for them in the context of
their family life.
www.arc-uk.org
Be Not Afraid (USA)
Benotafraid.net is an online outreach to parents who have received a poor
or difficult prenatal diagnosis. The family stories, articles, and links
within this site are presented as a resource for those who may have been
asked to choose between terminating a pregnancy and continuing on despite
the diagnosis. The benotafraid.net families faced the same decision and
chose not to terminate. By sharing their experiences, they offer
encouragement to those who may be afraid to continue on.
http://www.benotafraid.net/default.asp
A heart- breaking choice (USA)
For those
parents who choose to interrupt their pregnancies after poor prenatal
diagnosis, they hope to create a safe haven of encouragement and
validation.
http://www.aheartbreakingchoice.com/
Great books:-
Getting Pregnant and Staying Pregnant: Overcoming
Infertility and Managing Your High-Risk Pregnancy
(Diana Raab)
The High-Risk Pregnancy Sourcebook
(Denise M. Chism)
The Bed Rest Survival Guide
(Barbara Edelston Peterson)
When Pregnancy Isn't Perfect : A Layperson's
Guide To Complications In Pregnancy
(Laurie A. Rich)
Special
Children, Challenged Parents: The Struggles and Rewards of Raising a Child
With a Disability
(Robert A. Naseef)
Living
in My Skin, An Insider's View of Life with a Special Needs Child
(Lori Hickman)
The Parent to Parent Handbook, Connecting
Families of Children with Special Needs
(Betsy Santelli, Florene Stewart Poyadue and Jane Leora Young)
In
Time and With Love: Caring for the Special Needs Baby
(Marilyn Segal)
After
the Tears: Parents Talk About Raising a Child With a Disability
(Robin Simons)
When a baby dies: the
experience of late miscarriage, stillbirth and neonatal death.
(Nancy Kohner)
Help,
comfort and hope after losing your baby in pregnancy or the first year.
(Hannah Lothrop)
Not Compatible with
Life: a diary of Keeping Daniel
(Kylie Sheffield,
www.trisomyoz.bounce.com.au for a PDF copy of the book)
Healing
together: for couples grieving the death of their baby.
(Lister & Lovell)
A
time to decide, A time to heal- for parents making difficult decisions.
(Molly Minnick & Mary Ciotti)
Genetic
terminations
(Romeo)
Grief
therapy for men
(Mundy Linus)
Precious lives. Painful choices
(Sherokee Ilse)
Am I
still a sister? (Alicia Sims)
Kate’s
baby didn’t come home (Judith Murray)
What’s
dead mean? (Doris Zagdanski)
Be
good to Eddie Lee (Fleming,
V.)
Big
brother Dustin (Carter, A.R.,
Young, D)
Different
is not bad, different is the world: A book about disabilities
(Smith, S.L., & Booz,
B)
Rolling
along: The story of Taylor and his wheelchair.
(Heelan,
J.R)
Views from our shoes: Growing
up with a brother or sister with special needs.
(Meyer, D.J)
Our
new baby needs special help: A colouring book for families whose new baby
has problems
(Klayman, G)
We’re all
special.
(Maguire, A)
The
Best Comments:-
v
"Oh
Talina is here, can I have breakfast now ?"
Julianna,
3.5 years old,
discovering Talina for the first time in the bathroom.
v
"Oh I know just what you are going through...
I myself have lost my business last year..."
A
lady's comment.
v
"Oh look Talina looks like a turtle...."
Julianna,
when holding her wrinkly newborn sister.
v
"I am so sad for us... I lost my pet
last week too... It was only a baby and I can soooo relate to your
loss"
An
acquaintance
v
"Will your baby have its eyes opened for the
photos?"
A photographer when inquired about taking
photos of Talina.
v
"Oh bugger....."
Our rent property manager when finding out Talina would die.
v
"Oh it's horrrrrribbbbbbleeeeeeeeeeeeeee, are you
not thinking of committing suicide????"
A "friend"
v
"Well I nearly crashed twice but hey, at least I am
here alive"
Our
"driver" when coming to pick Talina up from the Hospital
v
"Oh, Did you put purple nail
polish on her?"
Talina's
nanny when discovering the very last pictures taken the day of the
funeral The
Best stories:-
There was a young
woman who had been diagnosed with a terminal illness and had been given
three months to live. So as she was getting her things
"in order" she contacted her Rabbi and had him come to her house to
discuss certain aspects of her final wishes.
She told him which
songs she wanted sung at the service, what scriptures she would like to
read, and what outfit she wanted to be buried in.
Everything was in
order and the Rabbi was preparing to leave when the woman suddenly
remembered something very important to her
"There's one more
thing" she said excitedly. "What's that?" came the Rabbi's reply.
"This is very important the young woman continued. "I want
to be buried with a fork in my right hand."
The Rabbi stood
looking at the young woman not knowing quite what to say. "That
surprises you doesn't it?" "Well, to be honest,
I'm puzzled by that
request" said the Rabbi. The young woman explained, "My grandmother
once told me this story, and from there on out, I have
always done so.I to pass along its message to those I love and those
who are in need of encouragement.
In all my years of
attending socials and dinners, I always remember that when the dishes of
the main course were being cleared, someone would
inevitably lean over and say "Keep your fork." It was my favorite part
because I knew that something better was coming...like
velvety chocolate cake or deep-dish pie Something wonderful, and with
substance!" So, I just want people to see me
there in that
casket witha fork in my hand and I want them to wonder "What's with the
fork?" Then I want you to tell them..."Keep your fork,
the best is yet to come."
The Rabbi's eyes
welled up with tears of joy as hugged the young woman good-bye. He knew
this would be on of the last times he would see her
before her death. But he also knew that the young woman had a better
grasp of heaven than he did.
At the funeral
people were walking by the casket and they saw the cloak she was wearing
and the fork placed in her right hand.
Over and over , the
Rabbi heard the question "What's with the fork" The story was told and
the pastor told the people , next time you reach down for you fork, let
it remind you ever so gently. "THAT THE BEST IS YET TO COME"
shared by Ron....Heavenly
Angels
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