What Do I Tell My Child?
“I don’t know when the best time is to talk to my child about some of things I know we need to discuss. I want to make sure she isn’t wondering about something and is having a hard time asking about it.”
Talking with your child about the illness and treatment
Right about now you probably either feel like there is so much talk about with your child that you don’t have enough quiet time to process everything in your own mind, or you may be having difficulty getting your child to open up and share how they are feeling and coping with the news of their illness. How do you get at what is going on inside your child’s mind? Perhaps they feel too sick and even down right angry right now to be very conversational.
Whatever the case, communication is crucial between you and your child right now. They need to hear and understand that you will love them whatever they say or think. Perhaps your head is spinning and you don’t feel completely comfortable handling delicate discussions about goals and hopes. Remember, you know and understand your child better than anyone else.
Take a moment to think about how you have discussed other difficult issues with your child and draw upon that experience. Try to use those same ways to engage with your child so they feel safe and familiar. Rather than trying to cover everything all at once, you might try discussing things in smaller bits, allowing time to digest the information. Maybe you know your child is better with getting everything out at once and talking it over right away.
Trust your instincts to help you determine how much to say and when. The right moments will appear and when they do, you can talk with your child lovingly and confidently. If your timing is off, just be patient. Your child will let you in when they can and when they need to.
Most young children naturally focus on the here and now stuff. Make sure your child understands the plan for today and for the immediate time frame. Reassure your child you that you will be their advocate, doing what you can to prevent pain and help them deal with whatever the day holds for them.
Older kids often have the tendency to try to go it alone because they want to protect you from their worst fears. They may be interested in talking to peers with similar conditions and you might find it useful to connect them with chat rooms and families referred by your medical team. Your child might be willing to speak and interact with child life specialists who play their way through communication and expression of conversations about feelings and fears.
This is madness for all of you and surely each of you will have your “madness moments” along the way. You will find that there are times that lend themselves better to discussions about logistics such as the timing of appointments, activities and family commitments. Times when they feel more vulnerable and more at peace will be better for more personal discussions.
Keeping communication open during health care visits
All parents have their own feelings about how much and when to share information regarding the severity and staging of their child’s condition. This is an important topic and one that is best explored with your physician and the team caring for your child as they begin to know and understand your child.
Be sure your child understands everything that is discussed when the health care team visits. Try to use comforting language and a tone of voice that conveys reassurance and confidence. Don’t be afraid to give the team feedback if they are not getting through or are confusing or frightening your child. Medical talk confuses most adults, let alone children who may be scared or intimidated by the authority of their physician and other providers.
You and your child may want to prepare a list of questions before your heath care visits. You can practice going through the questions to help your child become confident using their own voice to speak up when they don’t understand something.
No matter what their age, each child will live through this phase of illness in their own unique way based on their personality, their previous experiences, how they are treated, how safe they feel, how much discomfort they have, and so on. You can do a lot for your child by helping them find their own way to deal with this life changing experience. Your child will discover things about their self and you that would never have become known without this happening. Together, you can grow in love, courage, patience, resiliency, strength and hope.
Article contributed by Liz Sumner RN, BSN
Palliative Care Coordinator, The Elizabeth Hospice