Resources

Below is a growing and changing list of resources for those who may have lost a family member or friend to Duchenne. The resources listed here come recommended by members of our community.

The resources provided speak to different people at different stages of their journey – so you may find something things that work for you, while other things do not appeal.  These resources alone should not substitute for medical advice and/or therapy.

Please seek professional assistance should you feel you are in need of this kind of support.  To all who are exploring these resources, we extend our support and caring on this journey and remind you that your PPMD family is always here for you.

Organizations

• Center For Loss
  Led by grief counselor and educator Dr. Alan Wolfelt we are an organization dedicated to helping people who are grieving and those who care for them.
• Compassionate Friends
  The Compassionate Friends provides comfort, hope and support to every family experiencing the death of a son or daughter, a brother or sister, or a grandchild, and helps others better assist the grieving family.
• The Dougy Center.org
  The Dougy Center provides support where grieving children, teens, young adults and their families grieving a death can share their experiences.
• Grief.com
  Grief.com Grief resources for many different kinds of loss. Grief Support Group Directory provides a free, ever-growing directory of in-person local grief support groups by state.
• Grief Watch
  Grief Watch Newsletter and Grief Facts – free printable information worksheets covering a wide variety of topics including general bereavement, men and grief, death of a child, and more.
• Article: Dealing with the Death of a Sibling
  A post discussing some of the common feelings and reactions associated with sibling grief.

Books

The hope is that this Book Resource List will offer something for everyone.  Feel free to browse the descriptions.  Our goal is to offer variety of perspectives that may appeal and be helpful to different people in their healing journeys.

Books for Adults

• Bearing the Unbearable: Love, Loss and the Heartbreaking Path of Grief
  by Joanne Cacciatore
  Organized into fifty-two short chapters, a companion for life’s most difficult times, revealing how grief can open our hearts to connection, compassion and the very essence of our shared humanity.
• Beyond Tears: Living After Losing a Child
  by Ellen Mitchell
  Written by nine mothers who have each lost a child.  They candidly share what to expect in the first year and long beyond.  They offer reassurance that the clouds of grief do lessen with time and that grieving parents find a way to live, and even laugh again.
• From Mother to Mother: On the Loss of a Child
  by Emily R. Long
  Dozens of mothers put their hearts into words to share with other grieving mothers. Our hope is that in the darkest, loneliest hours of this life after loss, you will find some small comfort in the words of another mother who has been where you are now.
• From Father to Father: Letters From Loss Dad to Loss Dad
  by Emily R. Long
  This book is a simple book of letters written for you, a grieving loss dad, from other dads who are living and surviving after the deaths of their precious children.  This book offers acknowledgement and gives voice to the experience f fathers grieving their children.
• Shattered: Surviving the Loss of a Child
  by Gary Roe
  Bestselling author, hospice chaplain and grief specialist uses his three decades of experience interacting with grieving parents to give us this heartfelt, easy-to-read, intensely practical book. Shattered is not a magic pill.  The death of a child cannot be fixed. But comfort, compassion, guidance and hope can be found in these pages.
• When Things Fall Apart: Heart Advice During Difficult Times
  by Pema Chodron
  Drawn from traditional Buddhist wisdom, this radical and compassionate advice about what to do when things fall apart in our loves goes against the grain of our usual habits and expectations. This approach involves moving toward painful situations with friendliness and curiosity.  It is there, in the midst of chaos, that we can discover the truth of love that is indestructible.
• The Lovely Bones
  by Alice Sebold
  A fictional story about loss and how the ones left behind handle loss, following the death of a fourteen-year-old girl who has gone to Heaven.

Books for Kids

• Helping Teens Cope with Death
  by The Dougy Center
  This practical guide covers the unique grief responses of teenagers and the specific challenges they face when grieving a death.
• My Heart Hurts: A Grief Workbook for Children
  by Karen Jaggers, LPC and Certified Grief Specialist
  A workbook for children and teens who have experienced the death of someone whom they love and who is important to them. My Heart Hurts can help a grieving child begin to process the loss…as well as guide adults as to how to begin a dialogue about loss and grief with a grieving child.
• Tear Soup
  by Pat Schwiebert (Author), Chuck DeKlyen (Author), Taylor Bills (Illustrator)
  Tear Soup will validate your grief experience, and you can share it with your children. You can leave it on the coffee table so others will pick it up, read it, and then better appreciate your grieving time.
• The Fall of Freddie the Leaf
  by Leo Buscaglia
  This story is a wonderfully wise and striking simple children’s story about a leaf named Freddie.  A warm and thought-provoking story….an inspiring allegory illustrating the delicate balance between life and death.
• The Invisible String
  by Patrice Karst (Author), Joanne Lew-Vriethoff (Illustrator)
  Parents, educators, therapists, and social workers alike have declared The Invisible String the perfect tool for coping with all kinds of separation anxiety, loss, and grief. In this relatable and reassuring contemporary classic, a mother tells her two children that they’re all connected by an invisible string.
• When Someone Dies: A Child-Caregiver Activity Book
  by National Alliance for Grieving Children
  An activity book that provides valuable information to parents and caregivers about how grief impacts children. Each page offers guidance about how adults can connect with their child on the very difficult subjects of death, dying and bereavement.

Ways to Honor your Loved Ones

• Plant a tree
• Do a Race in their memory
• Fill a notebook with your favorite memories of your loved one
• Do an act of service in their name each year on the anniversary