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.

DSF Board Member, Jenny Tischer, understands the grief that you are experiencing at this tragic time. She lost her daughter in 2010 from complications due to Dravet syndrome. In the last few years, she began volunteering at her local Children’s Hospital with the bereavement department, reaching out to parents who recently suffered the loss of a child. She is available to support you in any way that she can. You can email her for help and support. You can read her daughter’s story hereShe and others within DSF can help by:

  • Contacting families after a loss
  • Sending support materials
  • Offer supportive resources
  • Follow-up support
  • Admittance to the Bereavement & Loss Support Group
Facebook Bereavement Support Group

Support Resources

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.

Additional support resources:

SUDEP resources:

 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 “ought to’s.”
  • 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 understanding.

Tissue Donation

The vision of DSF is to help researchers find ways to one day prevent or cure Dravet syndrome and related ion channel epilepsies so that future generations do not have to face the devastation of these diseases. We understand that tissue donation occurs at a particularly emotional time for loved ones and that it is a personal and difficult decision that will not be right for everyone. By making this generous donation, you improve the chances of finding a cure and better treatment options for these diseases.

Tissue donation is a very special gift, but is one about which you may have more questions about. Below is a link that helps explain the tissue donation process and links to tissue banks in North America.

Learn more about SUDEP Registries and Tissue Banks