Childhood Brain and Spinal Cord Tumors
Sibling grief
Siblings are sometimes called the “forgotten grievers” because attention is typically focused on the parents. Children and teens sometimes hesitate to express their own strong feelings in an attempt to prevent causing their parents additional distress. Indeed, adult family members and friends may advise the brothers and sisters to “be strong” for their parents or to “help your parents by being good.” These requests place a terribly unfair burden on children who have already endured months or years of stress and family disruption. Siblings need continual reinforcement that each of them is an irreplaceable member of the family and that the entire family has suffered a loss. They have the right, and need, to mourn openly and in their own way.
The family requires such reorganization after a child’s death, and there is nowhere to look for an example. Each person in the family constellation has different feelings and different ways of grieving; there is just no way to reconcile all of this when the supposed leaders of the group are totally out of it. Not to mention the fact that both my husband and I wanted more understanding and compassion from each other than we were possibly able to give.
Children express grief in many ways. Some children develop physical manifestations, such as stomach aches, a loss of appetite or voracious eating, or changes in sleeping or toileting habits. Many younger children regress; they may revert to diapers or baby talk, stop walking, or stop talking. Fears and phobias, such as a fear of the dark or of being alone, are common responses to loss. Children may develop unpredictable or disruptive behaviors, such as tantrums, crying, sadness, anxiety, withdrawal, or depression. Older children and teens may appear nonchalant, angry, withdrawn, or engage in risky behaviors, such as sexual promiscuity, alcohol abuse, and drug use.
Parents need to engage siblings of different ages at their appropriate developmental levels. Private time together, or individual outings with the parents, can be very helpful for siblings.
Families can pull apart when individuals within the family have incompatible ways of expressing grief. Men and women tend to express grief in profoundly different ways, which may seem intolerable or inexplicable to one another. In these situations, family therapy or some other form of counseling can help.
Some parents worry that if they start talking about their feelings, they will “break down” in front of the children. But the children know their parents are grieving and it hurts them to feel excluded. They are grieving, too, and if they see their parents pulling away from them, they are likely to feel that their parents do not love them as much as they loved the child they lost. Here are suggestions from families about ways to pull together while mourning:
- Let the siblings go to the funeral. They have suffered a loss and they need to say goodbye. They need support for their grief just as much as adults.
- Children and teens experience the same feelings as adults. By sharing your own feelings, you can encourage them to identify their own. (For example, “I’m really feeling sad today. How do you feel?”)
- Some families establish a regular meeting time to talk about their feelings. Both tears and laughter erupt when family members talk about funny or touching memories of the departed child.
- Jointly discuss how holidays and anniversaries should be observed. Each family devises different ways to handle holidays, the child’s birthday, and the anniversary of her death.
Last year we marked our first Christmas since Matthew’s death. It was so incredibly hard for me to open the boxes of decorations knowing that inside I would find treasures he had made for me over the years with his own two little hands. I cried when I found his stocking, because I didn’t know what to do with it. Somehow it didn’t seem right to not hang it as usual.
I decided that I would continue to place Matthew’s stocking beside David’s and Kristina’s. Instead of Santa filling it with treats, I asked my family to fill it for me. A few weeks before Christmas, I ask members of my family to write a memory of Matthew on a piece of paper. The only stipulation is that it must be a happy memory. On Christmas morning I look forward most of all to the gifts my children have made for me in school, and the memories that fill Matthew’s stocking. Matthew will always be included in our Christmas. That’s because he will always be an important member of our family.
Table of Contents
All Guides- Introduction
- 1. Diagnosis
- 2. The Brain and Spinal Cord
- 3. Types of Tumors
- 4. Telling Your Child and Others
- 5. Choosing a Treatment
- 6. Coping with Procedures
- 7. Forming a Partnership with the Treatment Team
- 8. Hospitalization
- 9. Venous Catheters
- 10. Surgery
- 11. Chemotherapy
- 12. Common Side Effects of Chemotherapy
- 13. Radiation Therapy
- 14. Peripheral Blood Stem Cell Transplantation
- 15. Siblings
- 16. Family and Friends
- 17. Communication and Behavior
- 18. School
- 19. Sources of Support
- 20. Nutrition
- 21. Medical and Financial Record-keeping
- 22. End of Treatment and Beyond
- 23. Recurrence
- 24. Death and Bereavement
- 25. Looking Forward
- Appendix A. Blood Tests and What They Mean
- Appendix C. Books and Websites