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Mended Little HeartGuide

Introduction Contents SECTION Allow your child to have privacy. As soon as your child is old enough to understand what is happening, avoid showing off scars and making your child the center of attention if it makes him or her uncomfortable. Many times, parents and caregivers are so busy trying to support other parents or raise awareness about CHD that they don’t notice how uncomfortable their child is about being showcased. Children’s scars are part of their bodies and should be kept private if that’s what they want. Some kids like to show off their scars and talk about CHD; it makes them feel brave and strong. Other kids do not. Respect your child’s wishes and allow for privacy. That doesn’t mean you can’t tell their story to others or raise awareness, but do so without involving your child. Some kids are very uncomfortable with their CHD for a year or two but then come out of that phase if they are given space. Always make it okay for your child to refuse to talk about their heart defect, no matter who asks — even teachers or other adults. Teach your son or daughter to politely answer: “I would rather not talk about that right now. It’s private.” This will help your child feel secure and in control. Admit that CHD isn’t fair, but don’t encourage wallowing. Let’s face it, CHD is not fun or fair, but the fact is, your child has to live with it. If they feel angry or sad about it, don’t minimize those feelings with platitudes like “It could be worse,” and “You should be grateful you are alive,” but don’t participate in complaining, self-pity or anger, either. Sometimes, your child just needs a listening ear or someone to say, “Yes, this does stink.” Sometimes a hug, a smile or a fun outing together can make a big difference. If your child goes through an angry or depressed phase, don’t try to fix it (yes, you’ll have a hard time with this), just keep giving them love — even if they won’t let you close — until the phase passes. Seek counseling if you feel it would help or if About My Child’s Heart Table of they become depressed or experience extreme emotions. Understand that adversity isn’t always bad. Many times, parents assume CHD is bad and that their child’s struggle will cause harm, but many people who travel through adversity are kinder, stronger and more self-confident because of the experience. Living with a chronic illness can also make kids more compassionate toward others. Recognizing your child’s strength and resilience will help build confidence. Tell your child how courageous he or she is. Parents and caregivers would take away their child’s CHD in an instant if they could, but most acknowledge that the experience of dealing with it has somehow made them a better person. It is the same for your child. Find other families with children who have CHD. Often, meeting other kids with the same or similar CHD can make your child feel more “normal” and confident. This is true for the siblings of children with CHD too; talking to other siblings makes their experience seem less scary. Even meeting adults with the same CHD can be inspiring to children, especially teens, and make them feel more hopeful. Go To 80


Mended Little HeartGuide
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