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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.

How DSF Can Help

When you lose a child, the pain is indescribable and the silence can be deafening. With the loss comes many questions and uncertainty about the future. Although there is no clear answer to these questions, we are here to help you through this journey of grief that can only be described as exhausting. Everyone grieves differently, and there is no right or wrong way to grieve. Do whatever it is that you have to do to get through each day. Most importantly, be gentle with yourself and allow yourself to grieve. Please complete this form if you would like a DSF staff member to reach out to you.

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. At CPN you will find wisdom from fellow parents and pediatric care providers to help you be the best parent you can be to your 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.

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Bereavement Support Resources

This list has been compiled by other bereaved parents,
with resources they found helpful on their journey of loss and grief.

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.

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