We are proud to introduce Edana J. Perry, our new SUDEP Program support and community program coordinator. Edana recently started serving as facilitator for our Adult Bereavement Support Group and wanted to share her family’s story with you.
My name is Edana J. Perry. My husband Bernard and I have three children, Taelor, Christian, and Kayla. Our youngest was diagnosed with juvenile myoclonic epilepsy (JME) at the age of 11 in 2002. Unexpectedly, Kayla passed away at the age of 26, in 2017.
The cause of death was Sudden Unexpected Death in Epilepsy or SUDEP. Our family had not heard of SUDEP at all. We were later introduced to the term from the Epilepsy Foundation. We are grateful for all the support from the Epilepsy Foundation.
I am working through my grief by journaling, writing poetry, writing books, grief counseling and being a part of grief support groups. Our family has decided to raise awareness on epilepsy and SUDEP by establishing a foundation in our daughter’s honor, the Kayla Ross Perry Memorial Foundation. We are forever #KaylaStrong.
How do siblings respond to a death?
The death of a sibling can have a deep impact on children depending on (1) their relationship with the sibling, (2) their age and awareness of the loss, and (3) parents’ ability to support the surviving children as they mourn the severe loss themselves.
The way parents handle their grief can affect the bereavement process for the surviving children. In certain cases, grief over the loss of a child may cause a parent to pull away or become emotionally absent from the other children. When this occurs, the surviving siblings may feel guilty for being happy or for needing their parents' support. They may fear that their parents may never recover from the loss and then feel a need to take care of their parents or be perfect to avoid upsetting them further.
What is the parent’s role in supporting grieving siblings?
Bereavement Specialist Maria Trozzi stated, “To ensure that children develop and master emotional skills as they process an initial loss and then face perhaps more profound ones in the future, caregivers have three major functions:
to foster honest and open relationships with children,
to provide a safe and secure space in which children can mourn, and
to be role models of healthy mourning.”
When dealing with the loss of a child, it is important to have an active support network, as well as a safe place to express your grief. Managing your own grief effectively will ease the burden children may feel and offer them a positive role model for coping. This creates a supportive environment for them to express their own grief.
If your child seems affected in ways you don't feel as though you can address on your own, such as symptoms of clinical depression, seek a qualified child therapist for extra help.
Tips for Supporting Children Through Loss
Give the child the opportunity to tell their story. Let them know you really want to understand what they are feeling or what they need. Encouraging them to share their feelings with you will enable them to sort out their feelings. Be prepared though; these feelings might hurt or distress you.
Be a good listener. Don’t judge the child’s responses. We all grieve in different ways. There is no right way for people to grieve.
Understand all children are different and unique. Don’t assume that children in a certain age group understand death in the same way or will have the same feelings. Help children understand loss and death. Use some of the resources in the next section to help.
Be Patient. Grief is hard work, and it is a process, not an event.
Be honest. Don’t lie or tell half-truths to children about the tragic event. Children are sensitive. They will see all information is not being provided and will wonder why you don’t trust them with the truth.
Be aware of your own need to grieve. You will be able to help your children work through their grief if you receive help yourself.
Recognize they have suffered a double loss. They have not just lost a sibling, but also their parents and other family members as they knew them before the loss occurred. Their role within the family may have changed. They may be an only child now, or perhaps now they are the oldest and with that they feel a change in responsibility.
Some of the above tips may not be easy to hear or learn because grief and remorse are great for parents. I know this because this information made me question my role in supporting my other children. I continue to work through my grief, and I’ve participated in grief counseling and grief support groups. There I was able to learn how to listen to my other children and husband and take their feelings into account. They were hurting as much as I was. Through the support of the group, family, and friends, I was able to work on my own grief and in turn help my other children.
Remember, you are not alone.
Family, friends, clergy, support groups, and mental health professionals are here to help us if we let them know we are in need.
Don’t hesitate to reach out to the SUDEP Program for support. We also have a section dedicated to children and grief in our SUDEP Resource Guide. Email firstname.lastname@example.org to contact us and to get your copy today.