Every family can recall the day Duchenne entered their home. You know the day, time, and place. You can close your eyes and recreate the circumstances of the diagnosis and the explanation of what happens next. How your lives and needs were going to change over time – a trajectory of loss of function that will include walking, moving arms, breathing, heart failure. It is too much to wrap your head around that day or any day to follow.
At the start of this journey, your world is shattered. But you breathe, grab someone’s hand, and you start to pick up the pieces.
Along this journey, you meet others, others you speak your new language – at meetings, social gatherings, on social media. Your once small family becomes a community, a village…your village. Your support system.
You share your life, compare experiences, seek advice. You belong.
When you lose your child, your heart is broken and the life you and your family knew, no longer exists. Where do you fit in in the Duchenne community? How do you continue to contribute to the family that you have grown to love? And how can you continue to honor your child, remember them, talk about them, move forward without them? Where do you go?
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.
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.
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 provides support where grieving children, teens, young adults and their families grieving a death can share their experiences.
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 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.
A post discussing some of the common feelings and reactions associated with sibling grief.
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.
- 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.
- 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.
More About Heartprints
Heartprints is a framework created by PPMD to provide families who have lost a loved one to Duchenne, a place to find solace amongst a community of friends who have experienced the death of a loved one.
Since PPMD began in 1994, we have said goodbye way too early to a number of men and women, boys and girls who touched our lives, forever changing us a community and leaving behind a permanent imprint on our hearts.
Often times, families can feel like there is no longer a place for them in the Duchenne community once the person they loved passes. PPMD wanted to create a virtual home where families can come for resources, information, others to connect with who get it. There is a shorthand, an unspoken understanding that we can offer each other that other friends or family in our lives may not get. Not because they don’t love us or don’t want to help but they just haven’t traveled the path we’ve traveled.
We hope that you will make Heartprints a home. A tool to use when you aren’t sure where to turn with resources that reassure and comfort. A way to connect or reconnect with Duchenne families.
And we hope Heartprints will be a reminder that you still have a community that is here for you and your family.