The death of a child at any age from any cancer is one of one of the most difficult challenges parents ever face. Neuroblastoma is not unique in this manner. The journey through grief is a very long, dark, difficult and painful one. It’s also highly personal, as no two people grieve or handle loss in the same way.
In the initial stages of grief, the pain can be all consuming. Daily life can be excruciating and thoughts of our child’s death weigh heavily on our mind and hearts. Even the happiest memories of our child while they were alive or healthy, bring palatable pain.
Bereaved parents do not “get over” the death of a child or simply “snap out of it” as the outside world seems to think we can or should. The death of a child is not an illness or a disease from which a parent can easily recover. It is a life altering event that a parent must learn to live with.
With the death of a child, we are forced to do what seems like the “impossible:” build a new life and learn a “new normal” for ourselves and our families in a world that no longer includes our beloved child. It is important for newly bereaved parents to know that they will experience a wide and often frightening variety of intense feelings after the death of a child to neuroblastoma or other pediatric cancer.
It is important to know you are not alone. And that the powerful, often life changing emotions you feel today will not last forever at their current intensity levels. Seek comfort and support from CNCF, from family and friends and with the help of professional support groups or grief counselors. One tremendous resource you might want to consult is Bereaved Parent USA (www.bereavedparentusa.org
Allow yourself the time you need for your body, heart and soul to grieve. You must go through it to move past it. While the journey will be difficult, you will survive. Be gentle and patient with yourself and your family. Allow yourself to cry, to grieve, and to retell your children’s story as often as needed and for as long as you need to.
In time, you will smile and find joy again. You will never forget your child; he or she will be with you in your heart and memories for as long as you live.
Common Feelings You May Experience During the Grieving Process:
- A profound longing and emptiness
- Wanting to die. This feeling usually passes in time; for eventually you will realize that you must go on for the sake of remaining family members, yourself and your child who died
- Profound sadness
- Crying all the time or at unexpected times
- Inability to concentrate on anything
- Wondering “Why???”
- Questioning yourself over and over: "IF only I had….?" "Why didn’t I…?"
- Placing unnecessary guilt on yourself or others
- Anger with yourself, family members, God, the doctor and even your child for dying
- Fearing like you are going crazy!
- Intense physical and emotional exhaustion (Grief is hard work and consumes a lot ofenergy)
- Difficulty sleeping or sleeping all the time
- Physical symptoms such as heaviness in your chest or having difficulty breathing (if these feelings persist see your physician) tightness in your throat, yawning, sighing, gasping or even hyperventilating
- Lack of appetite or over eating
- Weight gain or weight loss
- Anxiety (Often associated with overprotective behavior toward surviving children and other family members)
- Denial of your loss, thinking that your child will return. (Denial can be effectively treated by spiritual leaders as well as psychologists. Seek help if your denial phase persists beyond a month.)
- Needing to tell and retell the story of your child’s death
- Inability to function in your job
- Sensing your child’s presence or an odor or touch associated with your child
- Having difficulty grocery shopping because of seeing your child’s favorite food(s) on the shelves
- Irrationally upset with yourself if you smile or laugh, thinking how can I smile, my child is dead? (Your child will want your life to be as good and as happy as possible in spite of death’s intervention)
- Feeling like your spouse or other family members don’t understand your grief or are not grieving as you think they should -- Remember everyone grieves differently
- Losing old friends who don’t seem to understand your pain and grief
Grief” work” is a slow and individual process. Be patient with yourself and others. Don’t get frustrated with expectations about how long your grief process should take. You are not alone. Remember you are not the only one who has had these experiences. All the feelings noted above are typical, natural and normal for bereaved parents. Don’t ignore them. Work through them. If you don’t, it will take even longer until you begin to feel better, stronger. Grief experts report there are no timetables for grief; each person must take as long as they need to work through their feelings.