When your child has a chronic or life-threatening illness, much of your attention and care naturally go to that child.
It’s also natural to worry: “How are my other kids doing?”
Parenting children who are healthy is challenging enough. A chronic or dangerous illness can really change the dynamic. “Having a family member with a tough diagnosis can be hard, and siblings can be jealous, anxious, confused, angry—that’s normal,” said Dr. Christopher Drescher, a child psychologist at the Children’s Hospital of Georgia. “But it’s certainly not a given that if there’s a child with a chronic illness that a sibling will have all kinds of problems. There are lots of families that get through these really extreme challenges and do well and grow closer.”
So how can parents make this new normal as good as possible for their entire family? Read on.
The Sibling Cycle
Most of us have heard about the grief cycle. Siblings of children with disease tend to go through a similar cycle.
According to research, the toughest time for sibs tends to be right after their brother or sister has been diagnosed. “They don’t know much about the illness and there’s an abrupt shift in the way the family has been functioning,” said Drescher.
Having an open and honest conversation about what’s going on—not just once, but many times—is the best strategy. “There is a phenomenon where parents can pull back because they’re not wanting to worry the sibling or put the burden of knowing about their brother’s or sister’s illness on them,” said Drescher. “But then siblings can pull back from parents because they recognize that parents are worried and stressed and they don’t want to put more stress on them. There’s a reciprocal silence that develops, so it behooves parents to ask and to have multiple conversations with siblings—and not avoid the topic.”
While conversations will be different depending on what’s going on and the developmental age of the sibling, that first conversation should at least cover what the diagnosis is, what the treatments are going to look like and, within reason, what the prognosis is. For example, parents might explain that John has cancer in his bones, that he’s going to need to go the hospital every week for the medicine to treat his cancer—and that the doctors will give him strong medicine to help him feel better.
If siblings have questions, be as open and honest as you can, using age-appropriate language. If they don’t have questions right away, you can and should gently encourage questions, both then and as time goes on.
It’s also a good idea to have siblings come along to some hospital stays or medical appointments so they can see and hear what’s happening. This also gives them a chance to ask the doctor or nurses questions too. “Otherwise, kids can feel left out,” said Drescher. “Then they don’t necessarily learn as much about what’s going on with their sibling, which can lead to either a lack of sympathy or even more anxiety and worry about what’s going on.”
Encouraging siblings to help take care of their brother or sister gives them a sense of control as well as a role to play. “It depends on the illness and the age of the sibling, but it could be something really simple like holding their brother or sister’s hand when they’re getting a shot or having blood taken,” said Drescher. “It could be giving them a gift or reading books with them when they’re in the hospital, it could be praying if your family is religious, or it could even be helping to bring their medicine to them with a cup of water.”
Take Time for Normal
Taking care of your family when there’s a chronic illness really stretches the parental muscles, said Drescher. “The biggest thing is for parents not to withdraw generally from siblings because they’re stressed out,” he said. “There needs to be continued sensitivity of the effect of the illness not just on the sick child but on the brother and sister too. So have regular conversations and check-in. Parents often have to ask directly, ‘How are you? What do you need?’ because kids will not volunteer that information.”
Siblings who are struggling may start having problems at school, start getting into fights, stop hanging out with friends, cry often or have tantrums that aren’t age-appropriate, or otherwise act out of character.
Jealousy, feeling afraid and then just dealing with the usual day-to-day issues of being a kid are all real problems that can translate into behavior issues. So also make a point of doing normal activities as a family—things you did before your child was diagnosed. Keep up with movie nights or Friday night pizza, game nights or a visit to a local festival or concert. “Family dinner time, for example, is one thing that many families employ as a thing they do to try to bring a piece of normalcy to their lives and help decrease stress for everyone. They can do that even at the hospital and prioritize that,” said Drescher.
The whole family also benefits from outside support. Siblings can lean on strong friendships and community groups such as at church, or through sports, dance or other activities. Support groups and camps may also be available for siblings of children with a chronic or life-threatening disease. “Parenting’s a tough gig,” said Drescher, “so parents also need to take care of themselves and seek support.
“As they say, it takes a village, especially when we talk about these kids who are dealing with these extreme challenges.”