Focusing on the Positive: One Family's Experience With a Child's Chronic Illness
As printed in the Winter 2003-04 edition of Young and Healthy
| How to Endure Difficult Times |
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As the parent of two children with heart disease, Julie Balzano has found the following tips helpful for getting through the tough times: - Ask for and rely on others for help. "It's not easy to ask people for favors," Julie says, "but people do genuinely want to help, and you have to let them."
- Spend one-on-one time with each of your children.
- Lean on the experts at Cincinnati Children's. "The nurses and doctors are always willing to help."
- Rely on your faith.
- Talk with others, either on your own or through a support group. "Reach out and tell other people. Find other families with similar situations."
- Focus on the positive.
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Parents sometimes struggle with the amount of attention they pay to each of their children. For families who have a child with an ongoing illness or disability, this challenge is all too common. The Balzano family of Bridgetown, Ohio, is one such family.
Tony and Julie Balzano have spent many nights in hospital rooms, away from their family. They lost their daughter Maria to a heart condition at just 5 months old. The middle of their three sons -- Michael, 9; Matthew, 6; and Adam, 3 -- also has a chronic heart condition.
"Balancing attention is part of every family," Julie says. She used to worry that Michael would resent Matthew for the time she and Tony devoted to Matthew's care. She worries less today because the Balzanos make sure they spend quality time with each child. "We try to make everyone feel important," she says.
Only one of the two ventricles in Matthew's heart is large enough to function properly. Two open heart surgeries have given him blood oxygen levels close to that of a normally functioning heart. Some day, he may need a pacemaker or heart transplant. But for now, he takes medicine daily, has check-ups twice a year at Cincinnati Children's, and has to limit his physical activities.
Dealing With Limitations
No football -- on the doctor's recommendation -- poses a particular challenge. "Michael plays, and Matthew can't," Julie says. "I tell the neighborhood kids that Matthew can't be tackled, and he goes outside and tells them he can. She spends much of her time diverting Matthew's attention elsewhere. He's able to play baseball and basketball, and he's taken tennis lessons and Tae Kwon Do.
Julie emphasizes the importance of talking with Matthew's doctor about the things he can do, as well as those he can't. Then it's a matter of finding an option that fits Matthew's interests and his physical capabilities.
"I also have Matthew ask the doctor questions," Julie says. This way, her son hears the answer for himself straight from the doctor.
Older brother Michael is a big help, too. "He focuses on the positive for Matthew, and he makes an effort to stroke him for the good things he does," Julie says. This behavior comes naturally for Michael, but siblings may need daily parental guidance to interact appropriately with a child who has limitations.
Learning to Let Go
Julie admits to looking after Matthew a bit more than her other sons. She reminds him not to push too hard and to keep hydrated. But she also recognizes that she needs to let him watch out for himself. "If something's too much for him, he'll realize it," she says. As hard as it is to "loosen the strings," she and Tony have learned they need to let Matthew live his life. "The more resistant you are, the more the child will rebel," she says.
This lesson comes from other heart patients who are now teenagers. Julie sees what they have been through and how much they can do. She's met these patients through Hopeful Hearts for Children, a support group for families affected by congenital heart disease. Julie started Hopeful Hearts in 1997, when Matthew was 8 months old.
Starting the group has proven therapeutic for Julie. She has found it invaluable for families to reach out to one another and recommends the same to others. "Look into a support group," Julie says, "or find just one other family in a similar situation. Meet somebody you can connect with so you don't feel so alone, because it is a lifelong process."
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