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Trisomy 13 - Patau Snydrome - Photos, Support and Resources

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Trisomy13Archive.com


This is an archive of the LivingWithTrisomy13.org site (2005-2010) for current information please see:
http://www.livingwithtri13.org

To UPDATE AN ALBUM
please email Vanessa@livingwithtri13.org
 

Trisomy 13 Recommended Reading, Music, Gifts
& Educational Toys
These books, cd's, gifts, toys & dvds are recommended by our families

 Books, Music & Gifts for ADULTS

 Books, Toys & Music for CHILDREN 

FEATURED Gifts

FEATURED AWARENESS GIFTS

Coby 1.5-Inch Digital Photo Keychain (White)


Recommended by: ThereseAnn, mom to Natalia

Digital Photo Keychain
Digital photo keychains let you take your loved ones everywhere you go. It's easy to view and share family pictures anywhere with our digital picture keychain.
Recommended by: ThereseAnn, mom to Natalia
Neutrano 69020 Photowatch and Calendar Stores up to 60 Photos World Time Analog and Digital Display
Still holding out hope for one of those Dick Tracy-style two-way wrist communicators? The watch holds between 40 and 160 photos,
Recommended by: ThereseAnn, mom to Natalia
CREATE YOUR OWN STORY~ SHARE YOUR JOURNEY WITH TRISOMY 13 Blurb - Real Books Made by YOU
Download software, add photos, artwork, text, order one or many. Prices start at just $4.95
Trisomy Books - Books for ADULTS
Road Map to Holland: How I Found My Way Through My Son's First Two Years With Down Syndrome
by Jennifer Graf Groneberg
Rich with honesty, wisdom, and a deep appreciation for every day miracles, Road Map to Holland is a thoughtful, moving meditation on the struggles and joys Jennifer Graf Groneberg and her family experienced during her son Avery’s first two years.
Recommended by: ThereseAnn, mom to Natalia
My Child, My Gift: A Positive Response to Serious Prenatal Diagnosis
by Madeline Pecora Nugent
Due to increasing pressure by the medical and social community to terminate when a disability or lethal condition is diagnosed in utero, parents and relatives are confused and troubled about what to do.
Recommended by Monica Rafie of Be Not Afraid
Not Compatible with Life: A Diary of Keeping Daniel
Daniel's book is a strictly not-for-profit project that aims to raise awareness of trisomy 13 and similar disorders, and increase understanding and support for parents facing a difficult prenatal diagnosis.
Kylie would love to share Daniel’s story with you.
The Memory Keeper's Daughter by Kim Edwards
Edwards's assured but schematic debut novel hinges on the birth of fraternal twins, a healthy boy and a girl with Down syndrome, resulting in the father's disavowal of his newborn daughter.  Recommended by: Betty Van Gelder, mom to Lynne King
Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic by Martha Beck
Expecting Adam is an autobiographical tale of an academically oriented Harvard couple who conceive a baby with Down's syndrome and decide to carry him to term.  Recommended by: Betty Van Gelder, mom to Lynne King
Trisomy 13 ~ A Handbook for Families
Available on the SOFT site (not on Amazon) Recommended by the LivingWithTrisomy13 community of families.
For the Love of Angela Not Available on Amazon
by Nancy Mayer-Whittington
 "To be honest, there is nothing good about the death of a child. It is the life you lead afterward that creates the good....God always gives us a choice. Even when we think we have no options, we do...."
 Recommended by: Janelle & Michael Hennessey Ironman for Kids about a trisomy 18 baby and journey
Care of the Infant and Child with Trsiomy 18 or 13
Available on the SOFT site (not on Amazon) Recommended by the LivingWithTrisomy13 community of families.

Grief to Healing - Books for ADULTS

The Bereaved Parent
by Harriet Sarnoff Schiff
THE BEREAVED PARENT, in addition to being a virtual life saver to one who has lost a child, can also be read as a sort of guide book on how to provide support and love to your friends who are coping with the loss of life's most precious gift, their child.
Recommended by Erin,mom to Lilah
When God Doesn't Make Sense
An immensely practical book for those who are struggling with trials and heartaches they can’t understand. Why does disease, natural disaster, divorce, rejection, death, or some other sorrow seep into our lives when we are trying to serve the Lord? It just doesn’t seem fair!
Recommended by Erin,mom to Lilah
A Time To Grieve (Journeying Through Grief, Book One)
by: Kenneth C. Haugk
"A Time to Grieve" is the first in a series of four books designed to provide comfort, support, and encouragement to those working through the process of grief.
The book is based on the premise that grief is normal, natural, and necessary. Recommended by: Lisa Davis, mom to Joseph Michael
After the Darkest Hour the Sun Will Shine Again: A Parent's Guide to Coping with the Loss of a Child
by: Elizabeth Mehren
This inspiring guide to coping with the loss of a child combines the author's own story with the experiences and wisdom of others who have gone through this tragedy. Recommended by:
Micayla Carlson, mom to Faith
  An Empty Cradle, a Full Heart: Reflections for Mothers and Fathers After Miscarriage, Stillbirth, or Infant Death
by: Christine O'Keeffe Lafser
Nearly a million parents suffer a miscarriage or infant death each year. Theirs can be a lonely, quiet grief--with many emotions experienced but not easily expressed. This collection of more than a hundred short meditations beautifully interweaves the very real feelings of bereaved parents with Scripture passages that provide comfort, direction, and a sense of hope.
Chicken Soup for the Grieving Soul: Stories About Life, Death and Overcoming the Loss of a Loved One (Chicken Soup for the Soul)
by: Jack Canfield & Mark Victor Hansen
This latest entry in the Chicken Soup series is targeted at the newly brokenhearted: those who've recently experienced the death of a beloved friend or family member and are still reeling from the experience. Recommended by: Micayla Carlson, mom to Faith
Closer to the Light by: Melvin Morse, Paul Perry, and Raymond A. Moody
The skeptics have had their say; now listen to the experts. In hundreds of interviews with children who had once been declared clinically dead, Finally illuminating what it is like to die, here is proof that there is that elusive "something" that survives "bodily death." Recommended by:  Ruth Hadley, mom to Jillian Gaudet Hadley
Death of a Little Child
by: J. Vernon McGee

Recommended by: Lisa Davis, mom to Joseph Michael

Empty Arms: Coping After Miscarriage, Stillbirth and Infant Death by: Sherokee Ilse
A classic, this book was one of the first to offer support to families after their baby's death and to guide caregivers in their support of these families. With over 250,000 in print, this book touches the hearts of families at the time of their loss and over time as they heal.  Recommended by: Melissa Blom, mom to Abbie Joy
The Death Of A Child: Reflections For Grieving Parents
by: Elaine E. Stillwell
As a Pastoral Bereavement Educator and Companion, I had stopped recommending books because there are so many good ones being offered. With Elaine Stillwell's book, I have changed my thoughts and will now recommend "The Death of a Child" to anyone suffering a loss of any kind. Recommended by: Micayla Carlson, mom to Faith
Empty Cradle, Broken Heart, Revised Edition: Surviving the Death of Your Baby by: Deborah L. Davis
The heartache of miscarriage, stillbirth, or infant death affects thousands of U.S. families every year.Offers reassurance to parents who struggle with anger, guilt, and despair after such tragedy. Recommended by: Maria Demers, mom to Melina, Carolyn Harman, mom to Luke Steven Prothero, Jenny Heagy, mom to Alex
From Mourning to Morning: A story of hope and healing
by Linda Blechinger
A story that will make you laugh, cry and ponder life and death and life after death. This is a book that will challenge you to believe in more the you can see, feel and hear. Recommended by: Glenda Parkman, mom to Rebecca
Gone but Not Lost: Grieving the Death of a Child
by: David W. Weirsbe
Written with the Bible as a comfort zone, this book answers a lot of questions that you have about the death of your child. Recommended by: Melissa Blom, mom to Abbie Joy
Gone Too Soon: The Life and Loss of Infants and Unborn Children by: Sherri D. Wittwer
"I have treasured this wonderfully frank and insightful book. How tragic its concept, yet how much comfort and support it has given me and several of my dear friends who have also experienced the death of a child. Recommended by: Karen Sours, mom to Rose Marie
Grieving the Child I Never Knew by: Kathe Wunnenberg
A devotional companion offering comfort, the reassurance of God’s presence, and strength for the journey through grief to healing for those who have lost a child through miscarriage, tubal pregnancy, stillbirth, or early infant death. Recommended by: Micayla Carlson, mom to Faith
Help, Comfort, And Hope After Losing Your Baby In Pregnancy Or The First Year
by: Hannah Lathrop
Through her own experience with miscarriage as well as through the voices of other parents who have suffered the devastation of their baby's death, psychologist Hannah Lothrop guides parents through the experience of bereavement, from shock and disbelief to renewal and growth.  Recommended by: Kylie Sheffield, mom to Daniel
Holding On to Hope: A Pathway through Suffering to the Heart of God  by: Nancy Guthrie
Nancy Guthrie takes her fellow sufferers by the hand and guides them on a pathway through pain--straight to the heart of God. Holding on to Hope offers an uplifting perspective, not only for those experiencing monumental loss, but for anyone going through difficulty and failure. Recommended by: Robin Martin, mom to Corbin Glen Flax, Melissa Blom, mom to Abbie Joy, Gina Lynch, mom to Amaya
Hugs for the Hurting: Stories, Sayings, and Scriptures to Encourage and Inspire (Hugs)
by: John William Smith/LeAnn Weisss
Hugs communicate so much -- and they're especially important for the hurting. hugs express understanding, empathy, commitment, and a passing of strength from one to another. Every hurting person needs to feel the comfort and warmth that flows through a hug. Recommended by: Lisa Davis, mom to Joseph Michael
I'll Hold You in Heaven Remembrance Book
 by Debbie Heydrick
While there are many books that address the issue of grieving the loss of a child, this book stands alone by inviting the parents to express their emotions in an interactive way with what they are reading. Recommended by: Tami Izzi, mom to Angeliyah
Loving and Letting Go: For Parents Who Decided to Turn Away from Aggressive Medical Intervention for Their Critically Ill Newborns (Centering Corporation Resource)
by: Deborah L., Ph.D. Davis
For parents who decided to turn away from aggressive medical intervention for their critically ill newborns by Deborah Davis, Ph.D. Recommended by: Laurie-Beth Brennan, mom Serena Brianne
Safe in the Arms of God: Truth from Heaven About the Death of a Child
by: John MacArthur
Every parent who has lost a child has dealt with disturbing, haunting questions. Why my child? Where is my baby now? Will I ever see my child again? Recommended by: Becca Bouligny, mom to Nathan
Song for Sarah: A Young Mother's Journey Through Grief and Beyond by: Paula D'arcy
"A moving simplicity, a natural eloquence mark these real letters of a young mother to her child--her child in her womb, her child in her arms, and her child dead. She is never sentimental but touchingly sincere in her joy and in her sadness--and both under God. An unforgettable book." Recommended by: Ruth Hadley, mom to Jillian
Waiting With Gabriel: A Story of Cherishing a Baby's Brief Life by: Amy Kuebelbeck
In Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life, AP journalist Amy Kuebelbeck shares the heartbreaking story of the brief life of her son, Gabriel, born with a rare heart defect. Recommended by: Maya Nishikawa, mom to Mieko and site owner of Trisomy Voices
  When hello means goodbye: A guide for parents whose child dies at birth or shortly after
by: Pat Schwiebert
I met Pat at a conference.  She is a lovely woman...
Recommended by: Laurie-Beth Brennan, mom Serena Brianne

Pregnancy after Loss - Books for ADULTS

Marriage & Family

Trying Again: A Guide to Pregnancy After Miscarriage, Stillbirth, and Infant Loss
by Ann douglas and John R. Sussman, M.D
Written especially for parents who have lost a child, Trying Again provides facts to help determine whether you, or your partner, are emotionally ready for another pregnancy. Recommended by: Jennifer Ayers, mom to Caterina
Fireproof
by Eric Wilson
Surprised by what he discovers about the meaning of love, Caleb realizes that his wife and marriage are worth fighting for.
Recommended by: ThereseAnn, mom to Natalia
 
Pregnancy After a Loss: A Guide to Pregnancy After a Miscarriage, Stillbirth, or Infant Death by: Carol Cirulli Lanham
"A 'must-have' guide for the devastated couple dealing with the many questions and fears that occur with a subsequent pregnancy." For a woman who has experienced a miscarriage, stillbirth, or the death of an infant, conceiving another child can be fraught with mixed emotions.  Recommended by: Jennifer Ayers, mom to Caterina
The Love Dare
by Stephen Kendrick
As featured in the popular new movie Fireproof, from the team that brought us the #1 best selling DVD Facing the Giants, The Love Dare is a 40-day guided devotional experience that will lead your heart back to truly loving your spouse while learning more about the design, nature, and source of true love. Each reading includes Scripture, a statement of principle, the day's "dare," and a journaling area and check box to chart progress.
Recommended by: ThereseAnn, mom to Natalia

Health & Other Topics

The South Beach Diet Supercharged: Faster Weight Loss and Better Health for Life
by Dr. Arthur Agatston
Dr. Agatston shows you how to rev up your metabolism and lose weight faster while following the proven healthy eating principles of the original diet: choose good carbs, good fats, lean protein, and low-fat dairy.
Recommended by: ThereseAnn, mom to Natalia

The Five Love Languages: How to Express Heartfelt Commitment to Your Mate
by Gary Chapman
Unhappiness in marriage often has a simple root cause: we speak different love languages, believes Dr. Gary Chapman. While working as a marriage counselor for more than 30 years, he identified five love languages: Words of Affirmation, Quality Time, Receiving Gifts, Acts of Service, and Physical Touch. In a friendly, often humorous style, he unpacks each one.
Recommended by: ThereseAnn, mom to Natalia
From Belly Fat to Belly Flat: How Your Hormones Are Adding Inches to Your Waist and Subtracting Years from Your Life -- the Medically Proven Way to Reset Your Metabolism and Reshape Your Body
by C.W. Randolph M.D
Recommended by: ThereseAnn, mom to Natalia
Men Are from Mars, Women Are from Venus: The Classic Guide to Understanding the Opposite Sex
by John Gray

Recommended by: ThereseAnn, mom to Natalia
    by Dr. Laura Schlessinger: Recommended by: ThereseAnn, mom to Natalia


Stop Whining, Start Living


The Proper Care and Feeding of Husbands


The Proper Care and Feeding of Marriage

 

A special Thank you to Micayla, mom to Faith Constance Carlson, for helping
to compile this list of support material recommended by our Living with trisomy 13 community of families.

 

 

 

All text and graphics © LivingWithTrisomy13.org 2005-2010 - all rights reserved
Use prohibited without permission
All information found on this site was submitted to us directly by the families
and used on this site with their permission.

Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela Sullivan 2004, used with permission.
If We Hold On Together  Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.   Used with permission.
 
*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy 13 (Patau Syndrome) - child. It is not meant to replace any medical advise of a professional familiar with your specific condition. The personal journeys of any parents on this site are only their opinions and their own journey with having a Trisomy 13 child. You should consult with your own physician or other medical professional regarding the opinions or recommendations expressed within these pages as to your own child's symptoms and medical condition.
 
 

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