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Grace Ann with her sisters. Grace Ann was
diagnosed in utero with full blown Trisomy
18, a fatal condition. Her parents
experienced tremendous pressure to terminate
the pregnancy. Withstanding this, they went
on to deliver Grace Ann by C-section. Grace
Ann lived sixty-two days of love in
her family.
BOOKS AND VIDEOS
My Child, My Gift: A Positive Response to
Serious Prenatal Diagnosis
Author:
Madeline Pecora Nugent
Publisher: New City Press
The
following books and videos provide
additional information, encouragement, and
support.
Beck, Martha. Expecting Adam: A True
Story of Birth, Rebirth, and Everyday Magic.
New York: Berkley Books, 1999. When
Harvard-educated Martha and John Beck learn
that they are expecting a child with Down
syndrome, the news plunges them into an
alternate world where love means more than
scholarship and joy comes, not from doing,
but from being. A rich, funny, starkly real
warts-and-all story about the real world in
which we all ought to slow down and smell
the bushes. Expecting Adam shows what an
unimagined gift a child with a disability
can be because of how the parents change.
Burke, Peter: Brothers and Sisters of
Disabled Children. London and New York:
Jesssica Kingsley Publishers, 2004. Somewhat
clinical, this book examines various
responses of siblings to a brother or sister
with a disability. Various case studies help
parents understand the many different
reactions children can have. The book
contains several helpful suggestions.
Canfield, Jack, Mark Victor Hansen, Heather
McNamara, and Karen Simmons. Chicken Soup
for the Soul--Children with Special Needs:
Stories of Love and Understanding for Those
Who Care for Children with Disabilities.
Deerfield Beach, FL: Health Communications,
Inc., 2007. Many different vignettes from
many different families.
De Vinck, Christopher. The Power of the
Powerless: A Brother’s Legacy of Love.
New York: Crossroad Publishing Company,
1988. The story of Oliver de Vinck, whose
thirty years of life with severe
disabilities, changed his brother and his
family forever. The author also includes the
stories of three other people with
disabilities and details the many gifts
which they brought to their families and
friends. The Power of the Powerless provides
a rich perspective in looking back on a life
challenged by disability.
DeYmaz, Linda. Mommy, Please Don't Cry:
There Are No Tears in Heaven. Sisters,
Oregon: Multnomah Publishers, 2003. A
childlike picture book for Christian moms
who have lost a child before, during, or
after birth. Comfort and encouragement come
through the message that the child is happy
in heaven and awaiting mom. Biblical
references to heaven are in the back of the
book, which also contains two pages for
recording personal thoughts.
Fuller, Nina. Special Strength for
Special Parents: 31 Days of Spiritual
Therapy for Parents of Children with Special
Needs. Evansville, Indiana: GMA
Publishing, 2006. As well as being both an
inspirational speaker and author, Nina is
also the mother of two daughters with Down
syndrome. Using Scripture as a basis for her
reflections, Nina takes the reader on a
thirty-one day retreat that explores every
facet of parenting a child with a
disability. A real boost for parents who
need a shot of encouragement and hope.
Kingsbury, Karen. Summer; Baxter Family
Drama, Sunrise Series #2. Carol Stream,
Illinois: Tyndale House Publishers, 2007.
One of a series of popular Christian novels,
Summer tells the story of Ashley and
Landon’s third child Sarah, who is diagnosed
in utero with anencephaly. The drama of the
Baxter family unfolds around this news.
While the story is fictional, the attitudes
of the various family members are true to
life, and Sarah’s life is celebrated with
realism and joy.
Klein, Stanley D., Ph.D, and Schive, Kim,
Editors. You Will Dream New Dreams:
Inspiring Personal Stories by Parents of
Children with Disabilities. New York:
Kensington Books, 2001. Sixty-three
excellent vignettes and much good advice,
each from a different parent. A truly
personal account of many parents' individual
responses to the human, funny, bittersweet
experience of raising children with
disabilities. Excellent resource section
featuring agencies in nearly every state in
the USA.
Lafser, Christine O'Keefe. An Empty
Cradle, A Full Heart: Reflections for
mothers and fathers after miscarriage,
stillbirth, or infant death.
Chicago: Loyola Press, 1998. This tender,
small book combines Scripture verses on the
right pages with short reflections on the
left. While the Scripture is Christian,
generally the reflections are universal.
Parents who have lost a child will
appreciate the insight and honesty of these
brief, healing thoughts.
McCall, Ashli Foshee. Beyond Morning
Sickness: Battling Hyperemesis Gravidaruum.
Charlestown, South Carolina: BookSurge LLC,
2006. Hyperemesis Gravidaruum is a disease
that causes excessive nausea in pregnant
women. This book has much practical advice
for women with this condition and shares
several stories of women who had this
condition.
Nugent, Madeline Pecora. Having your baby
when others say no!: Overcoming the fears
about having your baby. Garden City
Park, New York: Avery, 1991. Out of print
but copies are currently available from CFP
Holy Angels Gift Shop, 520 Oliphant Lane,
Middletown RI USA 02842-4600. Text also
online This
self-help book is a guide to coping with the
many problems that mothers and their unborn
children may face, including disclosure of
unplanned pregnancy, finding financial and
other assistance, and making plans for the
baby. A great help for parents who need
practical guidance in difficult pregnancy
situations.
Papazian, Sandy. Growing Up with Joey: A
mother's story of her son's disability and
her family's triumph. Santa Barbara,
California: Fithian Press, 1997. Growing Up
with Joey details one family's journey with
their son who was born in 1977 with cerebral
palsy and epilepsy. Although the first four
years of Joey's life are more detailed than
the remaining years, the author takes the
reader up to Joey's seventeenth birthday.
Even though medical treatments are
constantly improving and every family's
experiences are unique, the emotional ups
and downs of a family with three other
children will resonate with parents who face
rearing a child with disabilities.
Gallagher, Peggy, Powell, Thomas H. Powell,
and Cheryl Rhodes. Brothers & Sisters: A
Special Part of Exceptional Families, 3rd
Edition. Baltimore, Maryland: Paul H.
Brookes Publishing Company, 2006. An
excellent book which details the many facets
of siblings relating to their brother or
sister who has a disability. Techniques,
questions, practical advice.
Reist, Melinda Tankard. Defiant Birth:
Women Who Resist Medical Eugenics. North
Melbourne, Victoria: Spinifex Press, 2006.
The nineteen women whose stories and photos
make up the bulk of this book were told
never to get pregnant and/or to terminate
their pregnancies. Some of the women were
older or had physical disabilities; others
were pregnant with children whose prenatal
tests revealed disabilities. The book
provides ample proof of society’s move
toward neonatal eugenics.
Snow, Kathie. Disability Is Natural:
Revolutionary Common Sense for Raising
Successful Children with Disabilities.
Woodland Park, Colorado: BraveHeart Press,
2005. Kathie Snow, the mom of a child with
cerebral palsy, begins with the statistic
that twenty percent of the population have
disabilities so disability is natural, as
USA federal law states. Snow develops her
ideas using a common-sense approach in
sharing how parents can successfully and
sometimes radically deal with differently-abled
children and with a society that wants to
focus on their disabilities rather than
their skills. For parents who want to raise
independent, well-balanced children, this
book is a must read.
Winter, Judy. Breakthrough Parenting for
Children with Special Needs. San
Francisco, California: Jossey-Bass, 2006. An
excellent book for parents of children with
disabilities. The book covers first
reactions to a child who has differences and
then escorts the parents through medical,
educational, and familial decisions from
birth to adulthood. A practical, positive
guide to parenting.
Wunnenberg, Kathe. Grieving the Child I
Never Knew: A Devotional Companion for
Comfort in the Loss of Your Unborn or Newly
Born Child. Grand Rapids, Michigan:
Zondervan Publishing House, 2001. A tender
and delicate journal for parents who grieve
prenatal or early infant loss. The book is
written from a Christian point of view but
has much good in it for those of other or of
no religious background. Each short chapter
contains an incident in the life of a
grieving parent, a reflection, questions
that assist in healing, and a place to
record your personal journey. Grieving the
Child I Never Knew validates a parent's
grief.
Yorgason, Blaine M. One Tattered Angel: A
Touching True Story of the Power of Love.
Salt Lake City, Utah: Shadow Mountain, 2003.
As told by her adoptive father, this
heartwarming and amazing story of Charity
Afton Yorgason gives deep insights into
parenting a child with severe physical and
mental disabilities. Born without a brain
cortex, Charity weathered many health crises
and alternated between bouts of pain and
joyful, giggling days. The love of her
family for her, and her for her family,
carried them all through days of darkness
and sunshine and brought gifts which would
have come no other way.
VIDEOS
Bittersweet: Stories of Open Adoption. Always Moving Pictures, 3349 Cahuenga Blvd. Suite 5,
Hollywood, CA 90068, 310-393-7123 (office), 310-890-2520 (cell),
email Steve@alwaysmovingpictures.com An excellent, fifty-three minute documentary featuring
birth mothers, adoptive families, and children involved in open adoption. A top-notch, insightful
film for parents considering an adoption plan for their child.
The Gift of Hope: Tony Melendez Story.
Vision Video, P.O. Box 540, Worcester,
Pennsylvania, 19490,
Tony is known worldwide for playing the
guitar with his feet. This is his story.
Including Samuel. A fifty-five minute
video by
Dan Habib, chronicling the life of his son
Samuel who has cerebral palsy. The
documentary presents educational and social
inclusion as a civil rights issue.
My Little One (Mein Kleines Kind.) An
88-minute documentary of a baby born with
Trisomy 18, made by his mother, who is a
midwife. A touching story of a pregnancy
from diagnosis in utero thorugh birth. In
German with English subtitles. The
website is
in German but can be read in other
languages.
Mooney, Matt. 99 Balloons. A
six-minute, on-line video of Eliot Mooney,
who was born with an underdeveloped lung,
hole in his heart, and Trisomy 18. The
video
details the ninety-nine days of his life. A
beautiful celebration of a child.
Snow, Benjamin. Thumbs Down to Pity.
(Woodland Park, Colorado: BraveHeart Press,
2006). Benjamin Snow, who has cerebral
palsy, made this
sixty-second on-line
movie. Benjamin is a capable
young adult whose goal is to have people
with disabilities be respected, not pitied.
My
Child, My Gift: A Positive Response to
Serious Prenatal Diagnosis
See
this
link for
ordering information.
To
contact publisher, please email
New City Press
To
contact author, please email
Madeline Pecora Nugent
Would you like to
have a copy of this
book mailed to a
particular
physician, health
care provider,
geneticist, member
of the clergy,
place of worship,
educational
institution,
library, pregnancy counseling
agency, friend,
relative, or other
individual? Or can
you give them a copy
of this book? The
Confraternity of
Penitents supports
the distribution of
this book to such
groups and
individuals and
offers a $5 discount
on each book so
ordered through the
CFP Holy Angels
on-line gift shop.
See this
link
for more
information.
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