BrainLine Homepage

I'm so thankful she survived, but I miss the little girl who used to run and sing and dance. Whenever there is loss, there is grief. Parents of children with brain injury know better than anyone what it is like to have life abruptly changed forever, to start defining things in terms of “before and after.” Grief is often confusing for parents of children who survive brain injury. You may feel angry, guilty, fearful, and vulnerable. You might question, “Why did this happen to my child?” Many parents describe a serious brain injury as a partial death, bringing emotional ups and downs that include elation at each new improvement and mourning for the child who “used to be.” You may also grieve the loss of your family as a “safe haven” where bad things didn’t happen. It is important to know that all these emotions are normal. You are not alone, and there is no “right” way to deal with your grief. You need to mourn in your own way and try to allow other family members to do the same. Everyone is different. Some parents become totally overwhelmed, cry constantly, and avoid friends and neighbors. Others hold it together by concentrating on all the things that need to be done and become whirlwinds of energy and organization, terrified that if they stop they will fall apart. Sometimes parents throw themselves into work, putting in extra hours. Although this might be necessary for financial reasons, often it is a way to avoid the pain. Your reactions may not seem “logical.” But let’s face it — no one is prepared for brain injury. Be gentle with yourself. And, above all else, allow yourself to feel the range of sad, angry, worried, and hopeful feelings that come when your child has had a brain injury. Remember that painful feelings can resurface any time — for example, on the anniversary of the injury, or with other important events such as graduations. Here are some things that can help:

• Talk with someone who is understanding.This can be a mental health professional, doctor, clergy, or even a good friend. Often parents find comfort in talking with other parents of children with brain injuries.
• Connect with the Brain Injury Association.You’ll find information and links to brain injury groups in your state. This is a good starting point for gathering resources that can help you cope.
• Live in the present.Although it is natural to think about “what was” and worry about “what might be,” all you really have is “what is.” Focus on the present moment. Think about the strength you’ve found within yourself and the things you’ve accomplished.
• Forgive yourself.Acceptance is the final stage of grieving following trauma. It may take a while, and there is no timetable for reaching this stage. Acceptance is not the same as giving in. Acceptance means accepting where you, your child, and your family are now. It involves looking ahead and planning for the future. Forgiving yourself and others is an important part of the process of accepting what happened and moving on.
• Seek help if your grief becomes too much to bear.Life may never be the same again if your child is seriously injured, particularly if the brain or spinal cord has been damaged. Feeling sad is part of grieving for what has been lost. However, if these feelings of sadness and loss persist and turn into feelings of hopelessness and despair, then it is time to talk with your doctor. You may need help through counseling, support, or medication.

  For another perspective, read the Janelle BreeseBiagioni article, Grief – There is No Way Around It! (from Lash and Associates Publishing/Training, Inc., Family Forum article). Sources:
Lash, Marilyn. 2003. When Your Child is Seriously Injured: The Emotional Impact on Families. Boston, MA: The Floating Hospital for Children and Kiwanis Pediatric Trauma Institute. Wade, Shari L., and Cincinnati Children's Hospital Medical Center. 2002. Putting the Pieces Together: An Online Intervention for Pediatric Brain Injury. Materials adapted from study. Schoenbrodt, Lisa. 2001. Children with Traumatic Brain Injury: A Parent’s Guide. Bethesda, MD: Woodbine House.

Diffuse axonal injury affects nerve fibers, which can lead to a  disruption in nerve communication — affecting a person's physical and cognitive abilities.