Helping Our Kids Cope with a Parent’s PH
Cindy Haan was diagnosed with pulmonary hypertension in April 2006. Cindy and Joe, her husband and caregiver, share their thoughts about discussing Cindy’s PH with their three children, Samantha (12), Matthew (11) and Jade (8).
Joe and Cindy:
As parents, we are actively involved in every aspect of our children’s lives. Socially, spiritually and academically, we are a closeknit group and hope to stay that way. But on a cool day in April 2006, our family and personal strength were tested when Cindy was diagnosed with pulmonary hypertension secondary to scleroderma. Everything transformed in one moment, and our world forever changed.
I thought I was out of shape, until the cardiologist gave Joe and me Internet literature about PH. Since we had no idea what PH was, it was all we had to go on until we saw the specialist. After we read the information the cardiologist had given us, we started preparing for the worst and thinking about how and what we were going to tell our beautiful kids, Samantha, Matthew and Jade. What are we going to say? How do we tell them, and how much do we tell them? How long do I have to live? Should we be brutally honest or only tell a little and hope for a miracle? Too bad the doctor had no idea of the advances in medicines and therapies for pulmonary hypertension.
We’ve always thought that children learn from their parents and other trusted adults. They learn how to cope and work through problems by observing their parents over the years. They watch over time and learn from what they are exposed to and how it was handled. I think that when children are put in difficult situations, especially ones they don’t understand, they look even more for guidance from role models or other adults in their lives.
Several years ago, while Cindy was in another part of the house, Matthew accidentally hit his head on the corner of a wall (I learned quickly that it doesn’t take a very big cut on the head to really bleed badly). I picked him up and was about to put pressure on the cut when big sis Samantha came into the picture and saw blood all over Matthew’s head and my white T-shirt. She yelled, “MOM, I THINK MATTHEW’S GOING TO DIE!!!” Once I got her to calm down and see what was really going on, she realized that it was only a very small cut that didn’t even require a trip to the hospital. I hope that Samantha and Matthew learned that it can be helpful to stay calm and not jump to conclusions without really knowing what’s going on. The same goes for PH. It’s not something anyone chooses to have, but it can and should be managed without jumping to the worst conclusion. Don’t waste your energy on worrying.
Anyone who has a close relationship with a PH patient knows that not jumping to the worst conclusion is a lot harder than it seems. A couple of months ago I was struggling with a persistently increasing fever. Joe and I were discussing whether to go to our local ER or make the three-hour trek up to Chicago where my PH specialist is. What we didn’t know was that our kids were standing right behind us in our bedroom. So this, as with everything else with PH in our family, became a family decision. The kids always know when something’s up and are no strangers to the ups and downs of pulmonary hypertension or scleroderma. I’m usually in the hospital three times a year at least, and have bouts of extreme pain with scleroderma, so the kids get shifted around between grandparents while we’re away for who knows how long. What kind of life is that for them? Always worrying if Mom is going to be okay?
When Cindy is admitted to the hospital, I explain in simple terms what’s going on and reassure our kids that she’s in the best place for now. Our youngest seems to get especially anxious during Cindy’s hospitalizations or tests, but we talk about it and end up agreeing that the hospital is the best place for Mom, and Dad will bring her home as soon as possible.
Joe has always said to not waste our time worrying; it doesn’t do any good. But our main concern through our journey with pulmonary hypertension and scleroderma has been how much information is too much information. How much do you tell your children about your illness in order for them to live a happy normal childhood, and for that child to become a valued part of society? How do we raise them bearing witness to my daily struggles? We’ve learned over time to only tell them what is essential until it is time to tell all. Children don’t need to know everything, as it only causes panic and worry.
We’ve always been reasonably open and honest with our kids and patient when answering questions. Well … except when dealing with the Tooth Fairy, Easter Bunny and Santa. But there is a good side to having a parent with a serious chronic illness: they are more perceptive, compassionate, caring and loving children. I’ve seen it with my own eyes. They hold doors for people. They see someone who is disabled and want to help, or they help out more at home. Sickness teaches compassion, sincerity, the joy of giving to those in need, and can lead to higher self-esteem because they feel good about doing these things.
Cindy and I have told our kids that PH is a bad disease, it can get worse, and sadly people do die from it. I also tell them that people die from other things every day as well and only God knows when it’s your time. What is important is that we show the ones we love that we love them now. I feel that my kids have developed into caring and compassionate young people, so we’ve learned over time there is always a fine line between what to tell them and what to hold back. I constantly tell them that their Mom loves them and she feels much love back. I also let my kids know that I feel loved and am proud of my family, and want them all to feel the same.
As parents, we need to be beacons of hope and carry ourselves with dignity for ourselves and for others. There are so many new methods, drugs, doctors and procedures. Even better, there are ways to network through the Pulmonary Hypertension Association. This is all thanks to the research, awareness raising and donations that are all working towards the goal of finding a cure. I couldn’t be where I am today without them. I couldn’t be here today without my family either.
This article originally appeared in the Fall 2012 Pathlight.