“Hope is the thing with feathers That perches in the soul, And sings the tune without the words, And never stops at all.” Emily Dickinson
Hope is sometimes hard to come by in the early days of a cancer diagnosis. There are so many ups and downs. Of course, you hope that your child will be treated, survive, and get back to the life he or she was living before cancer. But some moments, you worry this won’t happen. This is normal. It is normal for your child and others in your family to have these disparate feelings – sometimes feeling it will all work out and other times wondering, “what if it doesn’t?”
Children look to their parents to feel that you believe they will get better. It is important to remember that most children with cancer do get better these days. Sometimes your children will lean on you and want you to reassure them they will be OK.
Sometimes, you may feel like your hope meter is running low and you may need to lean on a spouse or partner, a friend, a doctor or nurse to get back to feeling hopeful. This is normal and is something important others can do for you. This is what is termed, “social support.” We all need social support.
The more you can keep the framework of your family life intact, the better. This especially helps small children, but everyone in a family feels better if not everything changes when a child gets sick. Having at least some expectations that family members will do as much of what they used to as possible helps everyone feel that the world hasn’t altogether changed. Of course, so much is different, so this is all relative. But if you can keep some rituals and some expectations consistent, it will help your sick child, your other children, and you.
Your presence will be a source of comfort. If your child is in the hospital, especially a hospital far from home, of course you will want to be with them. The more you can be there, the safer and better they will feel. Of course, you can’t be in two places at once, so if you are in the hospital far away, you can’t be at home with your other children and they will miss you. But these are the choices illness makes necessary. You and your spouse or partner, or whoever is helping you with your other children, will work out ways for you to perhaps rotate your presence or to stay in touch with the children at home.
Your child still needs you to set limits on what is OK. This may be very difficult. Before, when your child was sick or injured, you may have reduced these expectations. He or she may have stayed in bed, gotten pampered, and were up and about and back to regular expectations and discipline in a short period of time.
This time, it is different. Cancer treatment is long, and it is important to your child’s sense of well-being that you define new, appropriate expectations and limits for what is acceptable behavior. There can still be exceptions for days or times when your child feels physically very sick, but on a regular basis, you can convey more positive, hopeful messages by defining what you expect them to do and what limits to their behaviors you expect. If you lower your expectations, you send a message that may convey less optimism than you really feel.
- Discipline reinforces a sense of normalcy – continued predictable expectations, despite all the changes in the child’s life. For instance, if the child is playing with a sibling, he or she still must learn to share or be respectful.
- For older children, discipline emphasizes the importance of following through on commitments (homework, clubs); treating parents, siblings and friends with respect; maintaining family roles. This maintains an older child’s sense of belonging, being useful, and contributing.
You may want to be with your child all the time. With small children, they may want you there all the time. With older children, it is important to realize that they have little privacy in the hospital; they are dealing with many more people having access to their bodies than usual which can feel embarrassing. So, it may be important, when you can, to give them privacy in talking to their friends, changing their clothes, and being alone sometimes.
Older kids may also want to feel they are involved in important decisions made about their medical care. You can help make sure that happens. This doesn’t mean you can’t sometimes speak to the doctor without your child, but trying to encourage the doctors to talk directly to your child, not about them, may help make your child feel they are not invisible and that they are involved in their own care.