Coping with Grief and Loss
Losing someone you love or care about, particularly a child, is very painful. You may experience all kinds of difficult emotions and it may feel like the sadness you are experiencing will never go away. These are normal reactions to the loss of a loved one. Remember that there is no right or wrong way to grieve, but there are healthy ways to cope with the pain.
It is important that you take care of yourself and get support and/or professional help to work through the emotions you are feeling. Make certain your surviving children understand that you recognize their loss and grieving and that you love them. Open communication will help the entire family through the grieving process.
Mason's Movement + DSF
DSF has teamed up with the Mason’s Movement Foundation on their Good Mourning Project. Through this collaboration, we help to provide a bereavement package from Mason’s Movement, which includes bereavement resources for parents and siblings.
Please complete this form, and a DSF staff member will reach out to you with more information on the Good Mourning Project and other bereavement resources.
Additional Bereavement Resources
Bereavement Support Group
Connect with other bereaved parents
Remembrance Wall
Add a name to our virtual wall
Tissue Donation & Registry
Learn more about tissue donation
Ways to Help a Grieving Family
- Let your concern and caring show.
- Be available to do whatever is needed, including just listen. Being avoided by others only adds to a grieving parent’s pain.
- Tell parents you are sorry about what happened to their child and about their pain, but don’t say you know how they feel. Only other parents who have had a child die really know what that is like.
- Let parents grieve in their own way and at their own pace. It is not helpful to tell them what they should feel or do.
- Encourage parents to be patient with themselves and not to expect too much. This is not the time for “shoulds” or “oughts to.”
- Don’t try to fix parents’ pain. Reminding them that they still have other children or that they can have another child suggests the child who died is replaceable and not unique.
- Use the child’s name and share your special memories of the child with his or her parents. Allow them to talk about their child as much and as often as they want to. They may cry but they also will tell you that it makes them happy to talk about their child.
- Remember birthdays, anniversaries, and other special days. Grieving parents want to know their child has not been forgotten.
- Give special attention to the child’s brothers and sisters, not only immediately following the death, but also in the months to come. They also are grieving and need support and understandings.
Courageous Parents Network
Courageous Parents Network (CPN) is a destination created by parents, for parents, to support, guide, and strengthen families as they care for a seriously ill child or experience the loss of their child. Through Education, Community, and Advocacy, families and providers share the essential elements of understanding, coping, grieving, and healing and offer parents the information, skills, tools, and virtual support they need during their child’s illness journey or after the loss of their child.
Bereavement Support Resources
This list has been compiled by other bereaved parents,
with resources they found helpful on their journey of loss and grief.
Additional Support Resources:
Partners Against Mortality in Epilepsy (PAME): Grief & Death in Epilepsy – Learning from Loss
Mortality in epilepsy is impacted by factors that often are not present in other disease states, including the suddenness of death, and the common scenario where the risk of death was never discussed. This webinar explores grief among those who have lost a loved one to epilepsy, with a focus on the arc of grief over time and what “interventions” were most helpful in the time following death of a loved one.
