n ARE MY FEELINGS NORMAL AND WHAT CAN I DO ABOUT THEM? Learning that your child has a life-threatening illness can produce a variety of emotions. At first you may not believe it, or you may hope that the diagnosis is wrong. These are normal feelings to have after the diagnosis is made. Sometimes family members feel that they are somehow responsible for their child’s disease, or they feel guilty that they were not able to detect it sooner. Remember that there is no way that you could have predicted that your child would get this disease and no way that you could have prevented it from hap- pening. This disease was not caused by anything your child did or anything that he or she ate. It is the result of a faulty immune system. In addition to shock and guilt, you and your family will probably feel anger and sadness. Even the young- est members of your family will probably be affected by this illness. These feelings of anger, sadness, guilt, and shock are all normal. Each member of your family will express these feelings in different ways and at different times. It can be very difficult to feel so many strong emotions at once. Talking honestly with each other about feelings, reactions, and questions will help everyone in the family. It may seem difficult to talk to friends, family, or even medical staff, but sharing your feelings can help you cope with the situation. Remember that your child will benefit if family members continue to show that they care by being supportive and keeping open communication. If your friends and family give you information that seems to conflict with what your doctors have told you, be sure to talk to your doctors to clear up any confusion. n HOW CAN I HELP MY CHILD? As a parent, you will often notice changes in your child during treatment. These changes or symptoms can make you feel even more helpless. It is important to always remember that, in spite of changes on the outside, your child is still the same person on the inside. Hair loss, weight gain, and other changes in body appearance are temporary. All of your feelings about what your child is going through during treat- ment must be balanced by remembering that the treatment provides an opportunity to cure the disease and to have your child go on to live a normal, full, and meaningful life. It is important to reinforce to your child that nothing he or she did caused this disease. Tell your child that your angry or sad feelings are directed at the disease and not at him or her. This will help maintain hon- esty and closeness in your relationship. Like you, your child will need someone with whom he or she can share feelings. Don’t hesitate to ask your child to express his or her feelings. Don’t be afraid to explain, in age-appropriate terms, what is happening and why. Do not avoid using direct terms and explanations with your child. Children tolerate treatment better if they understand it and are allowed to be active deci- sion makers whenever possible. The same is true for parents. As you begin to learn the new, special needs of your child, it is important to remember that he or she is still a normal child and is still growing and developing. All children—both sick and well—need love, atten- tion, discipline, limits, and the opportunity to learn new skills and try new activities that are appropriate for their age.
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