Websites offering support and information:
www.griefwatch.com - Grief Watch
www.silentgrief.com - Silent
Grief www.caringbridge.org - CaringBridge
www.lpch.org/DiseaseHealthInfo/HealthLibrary/terminallyill/
www.centeringcorp.com - Centering
Corporation and Grief Digest Magazine www.misschildren.org - MISS
Foundation (Mothers In Sympathy and Support) Sites related to specific childhood illnesses,
diseases, or causes of death. www.missinggrace.org - Missing
Grace www.ntsad.org - National Tay-Sachs
& Allied Diseases Association www.candlelighters.org -
Candlelighters: Childhood Cancer Foundation www.curesearch.org - CureSearch:
National Childhood Cancer Foundation www.birthdefects.org - Birth
Defect Research for Children, inc. A non-profit organization that provides
parents and expectant parents with information about birth defects and
support services for their chidlren. BDRC has a parent matching program
that links families who have children with similar birth defects. BDRC
also sponsors a National Birth Defect Registry. www.marchofdimes.com - March
of Dimes One of the nation’s largest non-profits devoted solely to preventing
birth defects and reducing infant mortality. Currently the March of Dimes
has launched an aggressive campaign against prematurity, but continues
to fund research and prevention of birth defects and other causes of infant
death. Has a “Share” web site where you can share your story and meet
other NICU families, or those who have lost a child in infancy. www.cdc.gov/ncbddd/ - National
Center on Birth Defects and Developmental Disabilities www.trisomy.org - SOFT: Support
Organization for Trisomy 18, 13 and Related Disorders www.asfhelp.com - Anencephaly Support
Foundation www.cff.org - Cystic Fibrosis Foundation The United Mitochondrial Disease Foundation - The United Mitochondrial Disease Foundation is redefining hope for families affected by mitochondrial diseases – hereditary disorders, now considered as common as childhood cancers, that affect the cell's ability to produce life-sustaining energy. There are an abundance of titles that deal with grief, loss and coping.
Many of the sites listed above contain very extensive lists of quality
books. Below are just a few books that have been read and recommended
by members of the Soulumination family. Making Loss Matter: Creating Meaning in Difficult Times by Rabbi
David Wolpe Healing Wisdom of the Twenty-Third Psalm by Rabbi Kushner Empty Cradle, Broken Heart by Deborah L. Davis Ph.D. Tear Soup: A Recipe for Healing After a Loss by Pat Schweibert
and Chuck DeKlyen We Were Gonna Have a Baby, But We had An Angel Instead by Pat
Schweibert Holding On To Hope by Nancy Guthrie www.myforeverchild.com
- My Forever Child: Child loss keepsakes www.richremembrances.com
- Rich Remembrances www.oneheartstudio.com
- One Heart Studio thecomfortcompany.net
- The Comfort Company www.custombraceletsbylisa.com
- Custom Bracelets by Lisa
www.handonline.org - HAND: Helping
After Neonatal Death
HAND is a California non-profit whose mission is to help parents, their
familes, and their healthcare providers cope with the loss of a baby before,
during, or after birth. HAND offers on online support group as well as providing
assistance with finding a support group. Excellent resource list containing
both helpful books and internet resources.
Offers resources for bereaved families and professional caregivers. The
Director of Grief Watch wrote the excellent book Tear Soup: A recipe
for healing after loss.
A website created by Clara Hinton, author of several books on grief. Much
of the information contains Christian content, but there is a long list
of articles that would be appropriate for anyone regardless of their spiritual
beliefs.
www.compassionatefriends.org
- The Compassionate Friends
The Compassionate Friends is a national, non-profit, self-help support
organization that seeks to offer friendship, understanding and hope to
bereaved parents, grandparents and siblings. There is no religious affiliation.
The Compassionate Friends sponsor national conferences, the “Walk to Remember”,
and a Worldwide Candle Lighting every year, all in memory of children
who have been lost.
CaringBridge offers free personalized Web sites to those wishing to stay
in touch with family and friends during significant life events. CaringBridge
authors can easily create personalized Web sites that can display journal
entries and photographs. Well-wishers can visit the site to read the updates
and leave messages in the Guestbook.
A very thorough exploration of how to care for a terminally ill child.
It is found on the Lucile Packard Children’s Hospital at Stanford website.
A non-profit organization dedicated to providing education and resources
for the bereaved. Has extensive lists of book titles relating to infant
loss, death of a child, grief books for children and general grief resources.
The MISS Foundation is a non-profit, international organization which
provides immediate and ongoing support to grieving families, empowerment
through public policy and legislative education, and programs to reduce
infant and toddler death through research and education. This website
is full of articles, resources and information.
A site devoted to education about and prevention of stillbirth. Provides
links to the Pregnancy Institute which is one of the few research institutions
in America actively trying to understand and prevent cord accidents. Offers
online support to famlies who have lost a child to stillbirth or shortly
after birth due to a cord accident during delivery.
Offers support and programs geared to families affected by Tay-Sachs Disease
and over 40 other fatal degenerative diseases.
Candlelighters Childhood Cancer Foundation is committed to providing support,
education and advocacy for children and adolescents with cancer, survivors
of childhood/adolescent cancer, their families and the professionals who
care for them.
CureSearch unites the world’s largest childhood cancer research organization,
the Children’s Oncology Group, and the National Childhood Cancer Foundation
through their shared mission to cure childhood cancer.
A volunteer organization offering support for parents who have had a child
with a chromosome disorder, and education to families and professionals
interested in the care of these children.
Provides information and support for families who have chosen to continue
a pregnancy in the face of this devastating diagnosis. Offers personal
stories, medical information, support group resources and more.
The mission of the Cystic Fibrosis Foundation is to assure the
development of the means to cure and control cystic fibrosis and to
improve the quality of life for those with the disease.
Books
This book does not seek to answer why loss happens, but instead
explores how we can continue to live fully and more meaningfully in spite
of the pain of loss.
Rabbi
Kushner lost his own son at the age of 13 to a degenerative illness. His
books are always insightful and comforting.
Loving and
Letting Go: For Parents who Decided to Turn Away from Aggressive Medical
Intervention for their Critically Ill Newborn by Deborah L. Davis Ph.D.
A picture book for adults or older children that explores
what it means to grieve and ultimately heal after a tragic loss. Has wonderful
information and resources in the appendix.
A simple picture book for children to help explore the confusing
feelings young children when a much anticipated sibling dies and never
comes home.
Nancy Guthrie’s personal account
of losing two children within their first year of life to the same rare
disorder. It is also an examination of her Christian faith and coming
to terms with her loss in light of that faith.
Items and other websites that might be of interest
Remembrance jewelry and gifts to comfort those touched by the loss of
a child of any age.
Will create an engraved reproduction of a child’s footprints, along with
the child’s name and any other personal information you want to include
(ie. date of birth, weight at birth etc...)
Beautiful keepsake boxes that can be customized with any words you desire.
Examples are meaningful quotes, song lyrics, names, birthdate etc... The
boxes come in a variety of sizes, are all handpainted and then your words
will be handwritten in calligraphy.
Carefully selected memorial items, sympathy poems and cards, and bereavement
gifts.
Custom bracelets that can include names and birthstones, with up to three
names per strand. Lisa herself lost a child to Trisomy 18 and often makes
custom bracelets for bereaved parents.
