A Dozen Lessons Learned
From the Parenting at a Challenging Time Program
- Begin by identifying your illness. Call it “breast cancer” or “a brain tumor.” Euphemisms like a “lump,” “bump,” or “boo-boo” are confusing. When you name your cancer, you are telling your child you trust him with honest and open communication.
- The worst way for a child to hear troubling news is to overhear it. News learned by accident is often confusing and inaccurate. Keep the lines of communication open by letting your child know what is happening and what to expect, straight from you. Direct communication lets your child know she is important.
- Welcome all of your child’s questions warmly. Let your child know you are interested in questions about any topic. Be mindful of the settings in which your child is more likely to talk with you, such as in the car, at the kitchen table while you cook, or at bedtime. Try to be available at those times to make it easier for your child to share what is on his mind.
- Try to tease out the “real” question your child wants to ask. Ask your child to tell you what she was wondering about, or if there is something else she wants to know. You may find that there is a specific concern or worry that is the “real” question. Many times this specific worry can be more easily addressed than the initial question asked.
- Not all questions require immediate or detailed answers. It’s all right to say, “That’s a good question. I’ll need to think about it/discuss it with my [spouse, doctor, nurse, social worker, or other family member] and get back to you.”
- Respect a child’s wish to not talk. Do share basic information, as well as anything that may directly affect your child, in order to avoid confusion and surprises. Check in with your child from time to time and ask if he is hearing too much, too little, or the right amount about your illness, treatment, and changes at home.
- Don’t let your child worry alone. Encourage your child to share her worries with you. Sometimes people outside the family say unhelpful things with the kindest intentions. Ask your child to share with you what others may have said about cancer in general, or about your particular condition. Tell your child how varied the illness is and how someone else’s experience may not be the same as yours.
- Keep the channels of communication open with key caregivers. This includes grandparents, teachers, babysitters, coaches, and the parents of close friends. Ask your child to help you identify who the key point-people should be. By keeping them in the communication loop, you make it easier for these caring adults to provide the appropriate emotional support and stable routine your child needs during your illness.
- Try to maintain your child’s usual schedule. To help keep the routine as normal as possible, assign a point-person for each child. Post schedules, make lists, and use calendars to help your child and caregivers know what each day holds. Talk with each child’s teacher and let your children know who they can go to if they have a hard time at school.
- Carve out protected family time. Turn off the telephone and ask your friends and extended family not to visit at these times. Designate time when your child has your full attention without distractions. Use these moments to check in on the specific details of your child’s day. Listen carefully to hear his or her successes, frustrations, or concerns about the future. If you have many offers of help from family and friends, designate a “captain of kindnesses” to serve as a liaison for your volunteers, helping them determine how to be most useful depending on your current needs. This person can be a buffer, fielding phone calls and inquiries, so that family time can focus on the children, and not on the parent’s illness.
- Hospital visits often help children feel less worried. Talk with your medical team about good times for a family visit. Have extra support people accompany your children to the hospital. This allows you to adjust the length of the visit to what your child can comfortably manage. Be sure to have an adult check in with your child after the visit to hear about the child’s experience and to address any confusion or worries.
- Take care of yourself. Parents with cancer and their spouses or co-parents need to be mindful of their own well-being and its impact on their children. Be sure you get the help you need to feel confident in your medical treatment and to minimize side effects that may interfere with quality parenting time. It is normal to feel worried, but if you are overwhelmed or hopeless, get treatment for your emotional health. Children can feel secure and hopeful when they know their parent is receiving excellent care, is able to appreciate today, and has hopes for the future.