This advice could help parents of kids with serious illnesses

This advice could help parents of kids with serious illnesses


JUDY WOODRUFF: 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.” JOANNA BREYER, Author, “When Your Child Is
Sick”: Thank you. JUDY WOODRUFF: 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? JOANNA BREYER: 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. (LAUGHTER) JOANNA BREYER: 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. JUDY WOODRUFF: 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. JOANNA BREYER: 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. JUDY WOODRUFF: 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. JOANNA BREYER: 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. JUDY WOODRUFF: 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? JOANNA BREYER: 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. JUDY WOODRUFF: 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. JOANNA BREYER: 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. JUDY WOODRUFF: How did you have the strength
to work through so families going through that? JOANNA BREYER: 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. JUDY WOODRUFF: There are so many forms of
painful loss, but losing a child is unimaginable for most people. JOANNA BREYER: 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. JUDY WOODRUFF: 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? JOANNA BREYER: Luckily, he is a lawyer, and
I am a psychologist. (LAUGHTER) JOANNA BREYER: 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. JUDY WOODRUFF: 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. JOANNA BREYER: Thank you so much, Judy.


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