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As a psychologist and counselor specializing in the care of children with cancer, Joanna Breyer has advice for families facing stress for which they never prepared. Author of "When Your Child Is Sick," Breyer joins Judy Woodruff for a conversation.
Now the latest entry to the NewsHour Bookshelf, advice for parents coping with very sick children from someone who spent a career working with families facing stress they never prepared for.
After a career as a psychologist and counselor specializing in the care of children with cancer, Joanna Breyer has written "When Your Child Is Sick," a guide for parents of children undergoing medical care for serious illnesses.
Joanna Breyer, welcome to the NewsHour.
I will be candid at the outset. I wanted to talk to you because, among other things, my husband and I have had a son with serious medical issues.
And we know, I know, firsthand what a serious subject this is and how important it is to tackle it.
Did you — did this book just grow naturally out of your years of being a psychologist, or did you have to be talked into it?
I began by writing a book for children who hated treatment with a section for parents.
And enough people told me that the part for section — for parents was really good, but the part for children, mmm.
Perhaps I needed a children's author to write that part.
Another person suggested perhaps I could write a book for parents, reflecting their stories and my own observations over the years. And that's what I started to do.
You break some of the advice, much of the advice in the book up by the age of the child, babies, toddlers, and then children in school, and then adolescents.
And I — you do that because of obviously different levels of maturity, but also the importance of communicating.
I mean, and you have got some items here with us that you have actually used in your practice.
Yes. Let me introduce Ned.
He is a puppet who was a friend of many children. Some children used him to talk to, to — he developed the same problems often that they had, and together we would all figure out how he could deal with the problem.
And the child was much more likely to be enthusiastic about joining in if it was Ned who had the problem.
There are so many different bits of, I think, wonderful advice for family — immediate family members.
But, also, I think it works for people on the outside, family who are not there all the time for distant family, because you're dealing with not just the physical, but you're also dealing with the emotional effect of what's happened.
And that's where parents are very different. I mean, some parents immediately want to access a whole lot of people around them who will be the supports for them.
And other people, it may be more difficult to do that. Maybe they have come from far away. Maybe they won't have those supports immediately available.
Is there universal advice you give parents when they're dealing with this, or does it so vary from family to family and child to child?
I think the general advice that I would have is for parents to take as good care of themselves as they possibly can in the hospital, because it's so easy not to, and it's so stressful, and to actually remember to get a good meal, to remember to exercise, to remember to take breaks.
That's pretty good universal advice, I would say.
It's the physical illness, but it's the emotional impact. It's the child either maybe not understanding what they're going through or just out-and-out resisting what they're being asked to do.
The more they can understand that what they're getting treated for is for a particular condition, they need this X, Y and Z, if they're young, only a little bit at a time in advance, because their idea of time is a little shortened.
And — but if they can understand what something is being done for, they are more likely, not always, but more likely to at least try to cooperate.
How did you have the strength to work through so families going through that?
It was very, very hard. And it's very, very sad, particularly if I had worked a long time with the family and the child. And — but I would always remember it wasn't anything like as hard for me as it was for the parents.
Sometimes, in a way, it was a privilege to be with a family, talking with them, to the extent that they wanted. It's sometimes about things that were quite unrelated, sometimes things that were fun, sometimes wonderful memories that they had of their child, with their child, and sometimes how they wanted to deal with the situation.
There are so many forms of painful loss, but losing a child is unimaginable for most people.
Many parents did wonder how they would manage.
And I think that, for many parents, during the time of a child's illness and getting worse, their priority, in a way, for many parents, is to be able to be with that child in the best way they can be, in a way that they want to be there for them. They want to remember the time that they had as a time that was a good time.
And I have to finish by asking, by pointing out that it's not as if you don't live a stress-free life. You're married to one of the justices of the Supreme Court. He's been sitting on the court, Justice Stephen Breyer, for 24 years.
Did you take your work to him? And does he take your work — his work to you?
Luckily, he is a lawyer, and I am a psychologist.
What I can say is that he was always — he was terribly sad if he learned I had to go to a funeral. And he has been enormously encouraging every step of the way of me writing this book.
Joanna Breyer, the book is "When Your Child Is Sick: A Guide to Navigating the Practical and Emotional Challenges of Caring for a Child Who Is Very Ill."
Thank you so much, Judy.
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